Possible Problems

This section lists some of the more common possible problems that you may encounter. We are all different and many not have these problems. Each of the problems includes information on how others have dealt with these issues. Also check the Side Effects section for problems resulting in treatments.

Acid Reflux

Gastroesophageal Reflux Disease
(GERD, Acid Reflux)

LINKS FOR DETAILED INFORMATION

MEDICINENET

A comprehensive forum that covers such topics as:

What is GERD (acid reflux)?
What causes GERD?
What are the symptoms of uncomplicated GERD?
What are the complications of GERD?
How is GERD diagnosed and evaluated?

How is GERD treated?

http://www.medicinenet.com/gastroesophageal_reflux_disease_gerd/article.htm

ATOS

Laryngectomy and Reflux – Incidence of Reflux in Laryngectomees.
In the long-term, rates as high as 80% of reflux in laryngectomees (in pdf)
Consequences and treatment of reflux in laryngectomees

EMEDICINE

Emergency Care & Consumer Health

Topics Related to Reflux Disease (GERD)
Anatomy of the Digestive System
Asthma
Barium Swallow
Cancer of the Esophagus
Gastroesophageal Reflux Disease (GERD) FAQs
Gastrointestinal Endoscopy
Heartburn
Hiatal Hernia
Laryngitis
Understanding Heartburn/GERD Medications
http://www.emedicinehealth.com/reflux_disease_gerd/article_em.htm

Suggestions  & Information – acid reflux

ACID REFLUX–INTERVIEW WITH AN MD

Glenn E. Peters, M.D.
Director, Division of Otolaryngology
Head and Neck Surgery
University of Alabama at Birmingham, Birmingham, Alabama, USA

Q.  Doctor, in our meetings, there has been some discussion about why we can’t bend over after eating and drinking because liquids and even some foods will run back up the esophagus. Please explain what has been done that creates this problem and if we need to adapt ourselves because it will always be that way?

A.  Let’s talk about this reflux thing for a minute. Under normal circumstances, there are two muscular bands or sphincters in the esophagus which prevent reflux. One is located where the esophagus joins the stomach and the other is located behind the larynx at the beginning of the esophagus in the neck. The lower esophageal sphincter (LES) often becomes compromised when there is a hiatal hernia, a condition resulting from a weakness in the diaphragm which allows the stomach to slip up from the abdomen into the lower chest cavity. When this happens you get what is known as gastroesophageal reflux–the condition we all hear so much about in the media these days. The other sphincter, the cricopharyngeus or the upper esophageal sphincter (UES) prevents things from coming up the esophagus into the throat and mouth. This muscular ring takes its origin from the lower part of the larynx, a part called the cricoid cartilage. But guess what–you ain’t got one no more since your cricoid was taken out when your larynx was removed. This leaves the upper part of your esophagus sort of flaccid and always open and this could result in the reflux of stomach contents up into your throat and mouth. About 80% of the general adult population has a hiatal hernia. So if you have a hiatal hernia and, in addition, have had a laryngectomy then you get a double whammy.

So what’s a guy/girl to do? Gastroesophageal reflux is usually managed with medicine to stop the stomach from making acid, along with dietary and lifestyle modifications. Severe cases may require surgery to keep the stomach from slipping up into the chest. Taking care of reflux from the UES is more problematic, however. Simply knowing that this is a problem and its cause are probably the most important things. Avoid bending over when you have a full stomach after meals. You may also might try reducing the size of each individual meal and eat four or five times a day instead of the usual three.

Over the years since my larynx cancer was found, the thoughts on this have changed and expanded to many causes of larynx cancer and ONE of the big reasons is GERD, or basically, acid reflux.

If you have indigestion or acid washing up from your stomach into your throat (GERD), talk with your doctor. If you had this before your surgery, it will probably be more of a problem after. He may prescribe a medication that will help to reduce the acid.

Raising the head of your bed with blocks under the frame or using a wedge pillow on the bed can help to prevent the night time reflux. After a meal, avoid bending over, exercising, or lying down and let food and drink settle before bedtime.

I take my med on an empty stomach at least 1/2 hour before supper so I will be better protected at night.  For me, acid reflux is more likely to occur while sleeping or lying down and I get better results with this schedule.

A reminder: This is not a medicine you take so you can eat anything you want.  Eat the wrong foods and you may still have a problem and may need larger doses.  If you know certain foods give you a problem.  Be careful. Skip those.
Pat S.

Comparison of drugs for acid reflux – ppi

Consumer Reports has given a great report comparing the proton pump inhibitor drugs that are most commonly prescribed. These drugs are very similar but some have differences in the way they react with other drugs. In general, they are all effective and most of the side effects could be caused by the lack of acid in the stomach…which is why you are taking it, to reduce acid.

A general cost comparison is charted and you might note that there are two that can be bought OTC, so if you are ever caught without your drug, you can buy a package of Omeprazole or Lansoprazole at a local drug store. Ask your doc if it would be ok as a substitute should you not have enough of your regular drug with you on vacation. 
https://www.consumerreports.org/cro/2013/07/treating-pain-with-nsaid-medications/index.htm

REFLUX REVISITED

What makes reflux worse?
Caffeine
Alcohol
Tobacco use
Fatty & fried foods
Chocolate
Tomato products
Pregnancy
Obesity
Citrus juice & fruits
Carbonated beverages
Reclining after eating
Eating large meals
Eating before going to bed
Heavy lifting
Bending over at the waist
Wearing tight clothing that constricts the mid-portion of the body
Carminatives (peppermint, spearmint, cinnamon, garlic, onions, rosemary, basil)
Note: Before you think this cuts out all food worth eating in life—just eat some of these items in moderation.

Treatments:
Lifestyle changes:
* Elevate your torso while sleeping. Elevate head of bed with bricks or blocks 4-6″.
* Use a foam wedge. Pillows alone won’t help—they only raise your head, which can put pressure on your esophagus.
* Avoid the foods listed above.
* Don’t lie down for 2-3 hours after eating.
* Avoid large meals—try 5 or 6 small meals instead of 3 large ones.
* If you are over your ideal body weight, implement a sensible weight loss program.
* Sleep on your left side to help the stomach contents pool away from the esophagus.

Meds

* Liquid antacids are generally more effective than tablets; however, tablets may be more convenient at work or while traveling. Antacids are most effective if used before bed and after meals. They should not be used within one hour of taking prescribed anti-reflux medications or vitamins/minerals.
* H2 blockers such as Pepcid AC, Zantac, and Tagamet reduce the amount of acid produced by the stomach. H2 blockers do not completely eliminate stomach acid production and are more effective in treating peptic ulcers than in controlling throat and voice box symptoms resulting from reflux.
* Proton pump inhibitors such as Prilosec, Nexium, Aciphex, and Prevacid stop the production of stomach acid. The stomach enzyme pepsin does less harm to the lining of the esophagus, throat, and voice box when acidity is reduced. Proton pump inhibitors are most effective when taken an hour before a meal.

Exercise

* Some forms of exercise can trigger acid reflux symptoms.
* High aerobic activities, like aerobics and running can put pressure on your stomach.
* Try walking briskly instead of jogging.
* Try gentle toning exercises like yoga or Pilates instead of lifting weights.

Stress

While stress isn’t a cause of acid reflux disease, it can lead to behaviors that can trigger symptoms, like eating fatty foods or drinking too much caffeinated coffee.
Make time for yourself—read a book, watch a movie, garden, take a warm bath.
Research done by Vicki Metz

SUGGESTIONS from members FOR CONTROL OF REFLUX

1.  In addition to the one-a-day prescription medications that do an excellent job of controlling reflux, it is a good idea to wait an hour after eating before lying down. After a laryngectomy, we are much more susceptible to stomach contents coming back up the esophagus if we lean over or assume a horizontal position. Since the upper esophageal sphincter is often weakened or missing, there is nothing to stop this reflux from coming up into the throat, so allowing time for the stomach to empty is helpful.
Tip of the Month…If you are having problems with reflux at night, try raising the head of your bed by several inches and don’t eat or drink anything right before bedtime. You’ll sleep better.

2.  A drug a lot of us take, Omeprazole (generic), is a proton pump inhibitor which reduces acid to keep reflux from putting acid in your throat. It is not a cancer cure, but could be considered as a possible cancer prevention medication. It is regarded as safe to take and 1 a day would not be out of line in preventing acid from washing up to irritate cancerous or pre-cancerous tissues.

3.  Anytime your throat is smaller, be it from surgery, swelling, irritation, acid reflux, yeast, whatever is causing the swallowing passage to be smaller, your usual gulp will not all go down .and you sealed off the back of the mouth as you swallowed, so it comes back up to the only place it can, through the nostrils.To help this, get a straw and use it to sip liquids. Sip some while you are chewing and mix the food so it doesn’t jam up the passage. Swallow small amounts and be sure one is down before the next one comes after it.

Many of us learn to eat a little slower and sip, not gulp. Some also have it intermittently and adjust during bad times such as allergy season. Sinus drainage and allergies can cause irritation that is temporary. Acid reflux has caused mine to swell and make me have to be careful and reminded me to get back on Prilosec or the equivalent.
Pat S. AL

4.  I use my recliner very often, and have wedge shape pillow etc. I use them because of the ACID REFLUX which I have since this surgery.
Antal K. FL

5.  I was having trouble with a leaking prosthesis within a week to 6 weeks of insertion. They gave me Nystatin and Prevacid for acid reflux. I have had this prosthesis in now for 7 or 8 months. I had no indication that I had acid reflux but this has taken care of me
Gary S. VA

WEDGE PILLOW TO ELEVATE HEAD

For elevating my head to avoid reflux, I use a wedge pillow about 12″ high at the thickest end. I put a pillow on top of that. I prefer this to a tilted bed as we have no foot board and the mattress doesn’t slide down toward the foot of the bed. Also, since I am the only one affected–my husband can lie on a flat bed. I just take this with me whenever we go away from home for the night where getting an extra pillow isn’t always easy.

Vicki Metz

Being on Oxygen

What is a normal blood oxygen level?

Oxygen levels are commonly measured by two techniques. The first is a blood gas in which a blood sample is taken directly from an artery. This is the most accurate assessment of oxygen. The normal oxygen level using this technique is 80-100 (mmHg). The second technique is bloodless [and painless] and is called pulse oximetry. The result here is not a direct measurement of oxygen but rather represents the percentage of hemoglobin that is saturated with oxygen. Hemoglobin is a protein in the blood that carries oxygen to the tissues. A light sensor is used which is commonly placed on a fingertip. Pulse oximetry is not as accurate as a blood gas and can be influenced by temperature and circulation. The normal oxygen saturation is 95-100%.

As a laryngectomy we have special needs in the use of oxygen. A pediatric mask works well to fit under the neck to provide oxygen. Another option if you use an HME is one with a built in port for oxygen. Note: I checked the Boston Medcal site and was no longer able to find them. They were the only supplier that had them that I know of. If I get a link I will add it.

More information on Boston Medical can be found in our supplier section.

An issue just came up with one of our group, when she had to be transported via aid car to the hospital. They did not have a trach mask nor an adapter to connect the oxygen tubing to a mask. They had to get one through the repertory department at the hospital but of course that was way after the need. I did some research and found they can be ordered on line. It is a trach mask with the oxygen adapter included. Here is a link to the information:
Amazon trach masks

It might be worth having one on hand in case of emergencies.

Another good resource of information on those with oxygen, including information on the new Cannula Oxygen Glasses that integrate the cannula into the glasses can be found at:
https://www.verywell.com/complete-guide-to-oxygen-therapy-915010
Ron Mattoon 2010 Seattle, WA.

You can splice, repair or change the length of you oxygen hose by using the coupler at the following source:
https://www.vitalitymedical.com/invacare-oxygen-tubing-connector.html?fbclid=IwAR2vBmYsFfM2rsH2gftzAGr9TW6bl8cpi0nn9s0NB52hI1pR6s6F-HmYxGY

If you have questions about your own oxygen needs, your doctor should be your guide.

Swallowing Disorders

There can be many problems with laryngectomies with swallowing. The following site had tips and information relating to swallowing:
https://swallowingdifficulties.com/

Another great resource is:

https://www.swallowingdisorders.org/

They also have a link on the right of the page, to find specialists in swallowing.

Here is a link to their Facebook support group: https://www.facebook.com/groups/NFOSDSwallowingSupportGroup

Diaphragmatic Weakness & Paralysis

A weak or paralyzed diaphragm often goes misdiagnosed and left untreated, causing breathing issues that can worsen over time. While there are several medical treatments options, surgery remains the most effective way to treat a paralyzed or weakened diaphragm.

What is the Diaphragm?

The diaphragm is a large muscle that sits below the lungs and heart. The diaphragm is important as it is the primary muscle that facilitates breathing. When the diaphragm contracts, it becomes smaller, causing the lungs to expand in the chest cavity and allowing air to move into the lungs (inhaling). When it relaxes, it enlarges, causing a decrease in lung size thus forcing air out (exhaling).

The diaphragm is controlled by the phrenic nerve, a nerve that is attached to the cervical spine, the area of the spinal cord found in your neck. A paralyzed diaphragm is rarely caused by an injury to the diaphragm itself, but rather by an injury to the phrenic nerve or cervical spine.

What is Diaphragm Weakness or Paralysis?

Patients with a paralyzed diaphragm experience weakness of the diaphragm and have reduced breathing capabilities or are unable to control their voluntary breathing. They also have difficulty maintaining adequate gas exchange, as the lungs are not able to inhale and exhale outside air as efficiently. This is because the phrenic nerve is sending weak signals to the diaphragm to relax or contract, or is unable to send any signal part of or the entire diaphragm.

Diaphragm paralysis can be unilateral or bilateral.

Unilateral paralysis involves one side of the diaphragm. This means that the diaphragm is partially functioning, and the part that is paralyzed will move higher into the chest cavity, taking up space meant for the lungs and interfering with breathing.

Bilateral paralysis occurs when the entire diaphragm is paralyzed. This means that the diaphragm is unable to function in inhalation and exhalation and often requires a machine to assist with breathing.

What Causes Diaphragm Paralysis and Weakness?

Diaphragmatic weakness or paralysis is caused by damage or pressure on the phrenic nerve. There are several known causes that can lead to diaphragm paralysis:

• Birth defects such as congenital central hypoventilation syndrome
• Diseases of the nervous system, such as amyotrophic lateral sclerosis (ALS) or multiple sclerosis
• Injury, such as an upper cervical spinal cord injury that has spared the phrenic nerve
• Phrenic nerve fraying or damaging following cardiothoracic or pulmonary surgery
• Cervical spine arthritis
• Cancer that has spread and compresses the phrenic nerve.

While the cause can be identified in some cases, as many as 40 to 50% of paralyzed diaphragms are idiopathic, meaning the cause is unknown.

What are the symptoms of diaphragmatic weakness and paralysis?

Because the diaphragm plays a central role in breathing, the symptoms are more apparent when both sides of the diaphragm are affected. Symptoms of bilateral diaphragmatic weakness and paralysis include:

• Difficulty breathing, both at rest and when active
• Difficulty sleeping
• Fatigue
• Recurrent pneumonia

In unilateral diaphragmatic paralysis, which affects only one side of the diaphragm, dyspnea – or difficulty breathing – on exertion or when lying down is the most typical symptom.

How are diaphragmatic weakness and paralysis diagnosed?

Sometimes diaphragmatic weakness and paralysis is an incidental finding with imaging such as x-rays, MRIs, or ultrasounds. Other times, the diagnosis can be made with blood tests, such as arterial blood gas analysis, that can reveal a lack of needed oxygen in the bloodstream. Pulmonary function tests may also be performed to help confirm diaphragm issues. 

What is the treatment for diaphragmatic weakness?

Depending on the severity of injury to the diaphragm, some doctors recommend non-surgical options to treat the breathing issues associated with diaphragm weakness and paralysis. Surgical treatment is an option for more advanced cases or if breathing becomes so impacted daily life is affected. 

• Diaphragmatic Pacing: If the phrenic nerve is intact, diaphragmatic pacing is an option. Diaphragmatic pacing is a minimally-invasive surgical option that involves placing a pacemaker to regulate breathing by electrically stimulating the phrenic nerve. 
• Diaphragm Plication: Plication is another surgical option for treating a paralyzed diaphragm. Plication involves tying the affected side of the diaphragm to the side that is still functioning normally. This prevents the weakened diaphragm from becoming elevated in the chest cavity and allows the lungs to expand more efficiently and making breathing easier.

Mechanical ventilation with a breathing machine might be required in some more advanced cases.

Next Steps

If you need help for a diaphragm issue, we’re here for you. Call (212) 305-3408 or request an appointment online to get started today.

Related Services

• Diaphragm Center
  See all Related Services

Related Topics

• Diaphragm eventration
• Diaphragmatic hernias
• Diaphragmatic Pacing
  See all Related Topics
  
  Thank you to Dan Rounds for this information.

Dry Mouth – Xerostomia

A basic problem to watch for – Dehydration

Before we go on with information about dry mouth, we make Dry Mouth worse and complicate our other problems if we become dehydrated. We often have dry mouth (Xerostomia) because of our surgery or radiation which damages the saliva glands. 

Dehydration occurs when your body loses too much fluid. This can happen when you stop drinking water or lose large amounts of fluid through diarrhea, vomiting, sweating, or exercise. Not drinking enough fluids can cause muscle cramps. You may feel faint. Usually your body can reabsorb fluid from your blood and other body tissues. But by the time you become severely dehydrated, you no longer have enough fluid in your body to get blood to your organs, and you may go into shock, which is a life-threatening condition.

Dehydration can occur in anyone of any age, but it is most dangerous for babies, small children, and older adults.

A small part of the following explanation from WebMD,  covers many of us who are older, have had surgery, radiation or chemo and because of medications.

Dehydration in older adults

Older adults have an increased chance of becoming dehydrated because they may:

1. Not drink because they do not feel as thirsty as younger people.
2. Have kidneys that do not work well.
3. Choose not to drink because of the inability to control their bladders (incontinence).
4. Have physical problems or a disease which makes it:
Hard to drink or hold a glass.
Painful to get up from a chair.
Painful or exhausting to go to the bathroom.
Hard to talk or communicate to someone about their symptoms.
Take medicines that increase urine output.
5. Not have enough money to adequately feed themselves.

Most of the above information came from:
http://www.webmd.com/fitness-exercise/tc/dehydration-topic-overview

A little personal advice, if you think you are slightly dehydrated or becoming so, before you get in real trouble, start drinking water.  The old rule is 8 glasses of water or other fluids each 24 hour period. More if you exercise. Some advise drinking some juice or sports drink in with the water. Some will argue about what fluids are better.  Read about that later, just get some water down now (add a dash of juice or flavor to it if it helps you drink it.)

Eat juicy foods,like fruit and salads, make soup often so you get extra liquid… stay away from salty or very dry foods. For those of us troubled with dry mouth, and often some swallowing problems, we already know that dry foods do not work well with us.

Keep a bottle or jug of water with you and reach for it often. I have taken a couple of thermo cups, filled them with ice & water, put the caps on and left one on my desk so anytime I am checking the computer, there is water right there.  The other one goes to bed with me at night and is in my kitchen other times next to where I take my meds.
Pat Sanders/2013 Lary 1995

This after effect of radiation therapy or medications can be temporary or permanent. In response to requests for information and recommendations about xerostomia, remedies include the following:

1. Sip water frequently. Use a humidifier regularly to moisten air. These will both help to decrease thickness of salivary secretions.

2. Stimulate flow from salivary glands by using sugarless gum or chewing fibrous foods, such as celery or carrots, between meals (if tolerated).

3. Alternate solids and liquids during meals. Use sauces or gravies to add moisture to dry foods. Take small bites and chew well.

4. Saliva substitutes are available in sprays, liquids and, I believe, in gums, and gels. Ask your pharmacist to recommend products (i.e. Salivart, MouthKote). Be aware that saliva substitutes are a temporary solution and many patients consider them ineffective.

5. If xerostomia is severe, consider the use of medications, such as Pilocarpine and Bethanechol (Urecholine), which stimulate salivary production. Talk to your physician to determine if these are appropriate in your individual circumstances.

6. Prevent dental decay that may be associated with xerostomia by visiting the dentist more frequently and not eating sugar between meals.

Good luck. From my own personal experience, many of the patients that I have worked with have just learned to live with it.
Laurie R. Sabol, SLP

SALIVA STIMULATING LOZENGES

Papaya enzyme helps thin saliva and help with dry mouth. Many other product are available as well to help dry mouth. It is available in most pharmacy departments.
Ron M.

THICKENED SALIVA

For thick saliva – I was given this bit of advice by my dentist – keep some pineapple squares in their own juice in the fridge and eat one now and again – it works.
Liz UK

Moisture, Moisture, Moisture! Use your humidifier, drink lots of water. Sometimes tart drinks or hard candies stimulate production of saliva, but your body needs the water to thin it. Try both hot and cold drinks to see which works better for you. Cold bubbly club soda may cut it loose. (Suggestions from the WW Email list).

RECOMMENDED SITES

https://www.webmd.com/oral-health/guide/dry-mouth-treatments#1

This site lists various treatments and suggestions for easing dry mouth.

There is also a table listing the names of several commercially available Salivary Stimulants, Oral Moisturizers and Salivary Substitutes.

HINTS – for helping dry mouth from our members

1. Be aware that in my case, the mask and lead shield did not protect my salivary glands and esophagus which led to my lacking the saliva necessary to swallow as well as shrinking my esophagus by 30%. Some tricks I learned to compensate were:
a. Don’t use Listerine as it has alcohol that dries up saliva; use Biotene, which is alcohol free.
b. Stimulate your salivary glands in the morning by eating sugarless gum.
c. Get nourishment by drinking Boost and low acid, no pulp orange juice. I received proper nourishment.
d. By exercising my esophagus and salivary glands, I’m now able to eat frosted carrot cake, cheese food, goldfish and ice cream which has allowed me to gain 30 pounds.
John Fehr, Hamburg,NY

2. I discovered Biotene products, made by Laclede, at the IAL Convention held in Toronto. They have a chewing gum, which I like a lot! Although, it breaks down in my mouth after chewing it awhile, it does last longer than the other chewing gums that are on the market. I still have most of my teeth and since I had extensive radiation, it is very important that I keep my mouth moist. I didn’t have much success with the “sprays” that are on the market but I find that sugerless gum, help generate saliva. I carry a small water bottle at all times, otherwise I lose the quality of my “TEP” voice, since late in the day my saliva becomes very thick, and I am unable to swallow it easily.

You can go to Biotene.com for more information.

Another source of information is oracoat.com

Note: Eating sugars or things in acid (natural or added) can cause erosion of the enamel and increased tooth decay with dry mouth.

DRY SKIN TREATMENTS

Dry skin has a number of causes and often goes with dry mouth.
This can also be a symptom of Hypothyroidism. Refer to that section for more information.

Dental Issues

Oral Health

For many years, I have used a mixture of 1/2 Peroxide (3%) and 1/2 Listerine Mint mouthwash for rinsing, swishing, and brushing my teeth using the Sonicare.  It helps with coffee stains and, in my opinion, helps to control the growth of yeast in the mouth, especially when used just before bedtime so the mouth is clean of food all night.

This year one of our members, Phil B from CA, brought me a bottle of a product I had not seen before.  He said it is like what you mix up.  It is called Peroxyl, an anticeptic oral cleaner, and is made by Colgate. It promotes healing, helps prevent infection by reducing bacteria, and gives you a clean mouth. The peroxide in it is 1.5% and it has a minty flavor.  They do have one with an alcohol-free formula for sensitive mouths.

I think it is a good product. The cost is a good bit higher than what it costs to make the mixture I have been using but it is convenient.
Pat Sanders

My problems with Oral Health after Radiation

According to my learned SLP, Dr. Carla Gress, there are two main problems with radiation and dental issues. The first problem is a dry mouth caused by the effect of radiation on the salivary glands. A dry mouth allows air to get to the teeth. Air on the teeth can promote bacterial growth. And we all know that bacteria on the teeth can lead to cavities. The second problem is the effect of radiation on the blood vessels to the teeth. Radiation actually scars our blood vessels. The scar tissue causes our blood vessels to shrink. The shrunken blood vessels may restrict some of the blood flow to the teeth. Too much blood restriction can lead to our teeth possibly dying and breaking off. Please keep in mind that these are possible side effect of radiation on your teeth. Some of us experience them and some of us do not.

As a side note, this vessel shrinkage can effect the neck arteries as well. Many of us have had ultrasounds to determine if we have any arterial problems. In my case, for example, my right neck artery is flowing in the 39 to 50 percent range and is considered tortuous, which means the blood is not flowing in a straight line. When I turn my head to the right for more than a second I can pass out. The doctor gave me the sage advice “don’t do that.” Then he sent me a bill.

The efforts for attacking this real of potential dental radiation problem include frequent brushing of teeth, e.g., after every meal and at bedtime. Also, treating teeth with a fluoride solution. I use Prevident 5000 which I must get from my dentist by prescription. Another treatment you may consider is a mouthwash containing a small solution of peroxide in it.

One thing a new laryngectomee may not understand is that with our new limited ability to swallow we don’t realize that food can lay in the mouth unswallowed. I made this mistake. I further made the mistake of not brushing at bedtime when I was really sick and tired from the radiation and chemo treatments. I thought that I would brush in the morning and that would be okay. Well, it wasn’t.

I discovered that I could manage to eat ice cream. So, in the evening I would have a cup of vanilla ice cream with chocolate syrup on top. I didn’t realize that the residual syrup would just lie in my mouth and stain my teeth. Bad move. Only too late did I discover the error of my ways. Now my dentist, who is a saint, is working very hard to restore my teeth and give me a smile back that I can be proud of.

So, please learn from my mistakes and keep your oral care up to snuff. One lapse such as mine can lead to a lot of dental health problems. Like we used to say in the Navy, eternal vigilance is the price of safety. Or in this case it is the price of oral health.
Hank Luniewski
Charlottesville, VA
Lary since 2010

New dentures being too expensive, have you thought of having the old ones re-lined. Re-lining is far less expensive. The re-lined dentures have to be fitted to avoid rubbing so there is a process involved but it may be a solution for you.
Jack inFL ’97

Dental and Radiation

Articles on the WebWhispers site:

Changes in Dentition Following Head and Neck Cancer Treatment
Elizabeth Feldman, MS, DMD, MS
MD Anderson Cancer Center Orlando

Implants – Carl Strand –  report Written Dec 2012

As usual, we are all different. In 1991 I did 7 weeks of radiation for a total of 7000 rad (I know the units have changed) which I was told was the maximum for me. I had issues with the bottom front five teeth, resulting in root canals, pins and finally bonding one tooth to the adjacent two. I used fluoride trays and finally Prevident 5000 toothpaste. This situation
maintained itself with regular visits to my periodontist including cleanings until 2008 when both the periodontist and my regular dentist felt the situation was becoming unstable.

The periodontist consulted with my radiation oncologist who felt I was a candidate for implants, which I elected to pursue. I went through the procedure of extraction, bone grafts, three implants after healing and finally placement of a permanent bridge. I had no issues with healing, placement of the implants and all. I said on Webwhispers that I would  report back after three years on the outcome. There have been absolutely no problems except a much lighter wallet – not having any dental insurance.

I have no idea why I have been fortunate to not experience the issues described by some of you with necrosis, healing issues, need for hyperbaric treatment, etc. I have had two more implants in the upper back of my mouth, but currently have twenty six teeth in my mouth.

All that is to say that sometimes we get lucky.
Carl Strand – Radiation summer of 1993 – Laryngectomy February 1993

Strategies for managing dental side effects

Treating head and neck cancers with radiation therapy, drug therapy and surgery can cause oral and dental complications. It’s important to see a dentist before treatment begins to address decayed teeth and gum or mouth infections, particularly if radiation therapy is scheduled. Once treatment begins, these recommendations may help manage dental and oral side effects:

• Check your mouth daily, and alert your health care team immediately about changes.
• Brush your teeth, tongue and gums every four hours and at bedtime with a soft-bristled toothbrush and fluoride toothpaste for sensitive teeth.
• Floss daily. Contact your doctor if bleeding occurs.
• Rinse your mouth several times a day and always after eating.
• Aim to drink 64 to 80 ounces of caffeine-free beverages a day.
  
  Thanks to Patient Resources magazine for thest suggestions.
  

On Line References

Web sites that can help answer questions are:

The Oral Cancer Foundation has a good explanation of how radiation affects dental issues.
http://oralcancerfoundation.org/dental/

The National Institute of Dental and Craniofacial Research talks about the potential problems with radiation treatments.
https://www.nidcr.nih.gov/sites/default/files/2017-09/oral-complications-cancer-dental-team.pdf

Depression

Surprisingly to most, there are many types of depression. The most common is Chronic Depression (Dysthymia). This is believed to affect millions of people and is the mildest form. Some people with depression do not have the typical signs and they are considered to have Atypical Depression. Some experience Seasonal Depression (SAD) especially those that live in areas with short daylight.

Symptoms of depression may include the following:
• Difficulty concentrating, remembering details, and making decisions
• Fatigue and decreased energy
• Feelings of guilt, worthlessness, and/or helplessness
• Feelings of hopelessness and/or pessimism
• Insomnia, early-morning wakefulness, or excessive sleeping
• Irritability, restlessness
• Loss of interest in activities or hobbies once pleasurable, including sex
• Overeating or appetite loss
• Persistent aches or pains, headaches, cramps, or digestive problems that do not ease even with treatment
• Persistent sad, anxious, or “empty” feelings
• Thoughts of suicide, suicide attempts

The National Institute of Mental Health has more detail:
http://www.nimh.nih.gov/health/topics/depression/index.shtml

The most common cause of depression for laryngectomies is Hypothyroid (low thyroid levels). The thyroid is often partially removed as part of the laryngectomy surgery or damaged by radiation treatments. All laryngectomy patients should have your thyroid level checked by your doctor. Refer to Hypothyroidism in this section of the library.

Depression may be caused by mental stress or it may be physical. People experiencing illness can have problems adjusting to the new demands of the illness. This can bring on depression and can hamper their ability to cope and heal.

Depression may affect your sleep, cause fatigue, slow healing and increase pain levels. Depression can increase with time, causing a person to withdraw, seriously hindering their recovery.

Plenty of rest, a good diet and finding a support group, where talking to others is recommended, may be helpful. Others have gone through the same things you have and can be the best support.

Talk to your doctor for help that might include medications or counseling. Keeping a positive attitude is important to your well being. Sometimes it helps just to change your routine. Do something new or different that gives you a break from what you normally do.

If you demonstrate any of the warning signs of suicide with depression, call a local suicide hot line, contact your doctor right away, or go to the emergency room for immediate treatment.
Ron Mattoon

Purple.com is a site with tips on helping deal with sleep problems

We all know that sleep is crucial to maintaining mental and physical health, but as we age, new factors come into play that may be preventing us from getting a proper night’s rest. With that in mind, we’ve created a brand new guide detailing tips and tricks to get a better night’s sleep. Whether you are taking care of an elderly loved one, or just in need of more shut-eye yourself, this piece offers practical advice in a way that isn’t a total snoozefest to read – I really think your readers will enjoy it!

The guide covers:

• Why quality sleep is more important than hours slept
• Sleep patterns and what they mean
• How to establish a relaxing sleep environment
• Proper diet and exercise for better sleep
• And much more!

You can explore the guide for yourself here:
https://purple.com/blog/senior-sleep-guide

posted 9/2018

JenReviews

Jenreviews site is about mental issues and has a lot of varied information and tips. It has a lot of things that will help dealing with depression. There are several pages on many things that can help people cope and approve.
https://www.jenreviews.com/mental-health-diagnosis/

posted 09/23/18

Sites with good reading or research material

One of many articles at Mayo Clininc in their secton on Depression:
http://www.mayoclinic.org/diseases-conditions/depression/basics/definition/con-20032977

Our April 2018 newsletter has a lot of inputs from members on depression and is worth reading in our April 2018 Newsletter. It can be accessed from the past Newsletter listings.

Another good article on depression can be found in the following PDF file:
DepressionArtMay%2702IAL%20News%20copy

Facebook has a page with information on Depression. It can be accessed at:
https://www.eurekalert.org/pub_releases/2015-12/uotm-dha120315.php#.WsI2nXFlg7A.facebook

Hypothyroidism

One factor frequently overlooked by laryngectomees (and in many cases their doctors) is the possible damage done to the thyroid as a result of surgery and radiation therapy. The symptoms of hypothyroidism may include lethargy, weakness, cold intolerance, mental slowing, weight gain, and depression. They are not only associated with aging, but may be confused with chronic-fatigue syndrome and anemia. A laryngectomee should be sensitive to the possibility of under active thyroid and should ask about a simple blood test for the four main constituents of thyroid output on a yearly schedule. If your test ever shows you to be hypothyroid, a single pill a day will take care of restoring the balance but will have to be monitored for changes needed in medication. (Bob Hopkins)

SYMPTOMS

The following are symptoms of hypothyroidism, as detailed by

the Merck Manual, the American Association of Clinical

Endocrinologists, and the Thyroid Foundation of America.

You will not have all of these but some fit together and can be thought to be other diseases that combine fatigue, depression, dryness

____ I am gaining weight inappropriately
____ I’m unable to lose weight with diet/exercise
____ I am constipated, sometimes severely
____ I have hypothermia/low body temperature (I feel cold when others feel hot, I need extra sweaters, etc.)
____ I feel fatigued, exhausted
____ Feeling run down, sluggish, lethargic
____ My hair is coarse and dry, breaking, brittle, falling out
____ My skin is coarse, dry, scaly, and thick
____ I have a hoarse or gravely voice
____ I have puffiness and swelling around the eyes and face
____ I have pains, aches in joints, hands and feet
____ I have carpal-tunnel syndrome
____ I am having irregular menstrual cycles
____ I feel depressed
____ I feel restless
____ My moods change easily
____ I have feelings of worthlessness
____ I have difficulty concentrating
____ I have more feelings of sadness
____ I seem to be losing interest in normal daily activities
____ I can’t seem to remember things
____ I have no sex drive
____ I am getting more frequent infections, that last longer
____ I’m snoring more lately and may have sleep apnea
____ I feel shortness of breath and tightness in the chest
____ I feel the need to yawn to get oxygen
____ My eyes feel gritty and dry
____ My eyes feel sensitive to light
____ My eyes get jumpy/tics in eyes, which creates dizziness and
____Headaches
____ I have strange feelings in neck or throat
____ I have tinnitus (ringing in ears)
____ I get recurrent sinus infections
____ I have vertigo

Articles

WHAT ON EARTH HAPPENED TO MY THYROID GLAND?

(From HeadLines)

First, the thyroid gland is shaped like a butterfly and lies in a position adjacent to the larynx and trachea. There are two lobes, one on each side of the larynx and trachea. These lateral lobes are connected by a narrow isthmus, which crosses the trachea just below the larynx.

In doing a laryngectomy, we try to save as much of the gland as possible. Usually, we can save both of the lateral lobes, which means you are left with essentially all of your thyroid tissue. However, sometimes it is necessary to resect half, or even all, of the thyroid in order to adequately remove the cancer. When we remove the larynx, we dissect the portion of the thyroid that we are going to save off of the larynx and trachea and leave it lying in the neck on either side of the esophagus. This means that your thyroid gland is actually in two halves, one on each side of the esophagus and slightly above your stoma.

The problem with thyroid function can come in several scenarios. The first one is obvious with the need to remove all of the thyroid tissue. You will be on thyroid replacement medication before you leave the hospital. (By the way, you will also be on calcium and vitamin D replacement before your discharge as well.) The other two scenarios are more subtle. The first involves leaving some thyroid tissue but compromising the blood supply in doing the laryngectomy. What happens is the thyroid slowly gives up the ship and dies.

The last and probably the most common thing to happen is radiation therapy. The radiation causes the small blood vessels in the gland to slowly stop up so you end up with a small scarred gland with poor blood supply and inadequate function.

Does everyone who has radiation to the neck need to be on thyroid replacement medicine? The answer is “no”. If you are having the symptoms of becoming fatigued easily, low energy level, weight gain, etc., and if you have had radiation, then you should have your thyroid hormone levels checked with a simple blood test. Replacement medicine can then be given on the basis of those results.
Glenn E. Peters, M.D. , F.A.C.S.
Director, Division of Otolaryngology – Head and Neck Surgery
University of Alabama at Birmingham, Birmingham, Alabama, USA

Even if your symptoms are mild, do ask your doctor to check your thyroid and explain to him that we are at high risk for hypothyroidism. If the test is normal, that’s fine, but be careful if it is borderline normal to get checked regularly. Some people have strong symptoms when borderline and some doctors start you on a small dose of medication at that time.

LARYNGECTOMEES AND THYROID PROBLEMS

Do all laryngectomees have problems with hypothyroidism? The answer is no, but the percentages of those who are hypothyroid after receiving treatments for throat cancer is high enough that we should all be checked. People who have had radiation for head and neck cancers, even though they have not had a laryngectomy, are high on the list of ones who should keep a check on this. Some of us had radiation some years before surgery and may never have considered that we could have been somewhat hypothyroid as the result of that radiation even before the laryngectomy was done. If, during surgery, your surgeon removes a goodly portion, or all, of your thyroid, he will be aware to check you later for hypothyroidism but radiation causes hidden damage. Damage to the thyroid can happen during surgery when the thyroid is not removed. Only your symptoms and the thyroid blood test will tell.

Actually as many as 1 in 10 women are taking their “pill for the day”, usually Synthroid (also under other names), to keep their metabolism normal. The thyroid controls the metabolism. The symptoms can sneak up on you because so many are common to other illnesses, especially as we grow older, when our metabolism might normally slow down. The slowing metabolism caused by hypothyroidism affects every organ including the major ones, the brain and the heart.

The symptom everyone gets excited about is Weight Gain, because they would like to think they have something to blame it on and a pill to miraculously lose 20 pounds. Sorry, it doesn’t work quite like that. But if you become hypothyroid, you likely have water retention that, in addition to giving you swollen eyelids and a puffy face may add 5 or 6 pounds. In addition, the fatigue and sleepiness tend to have you doing less physically, so more weight might be gained from the lack of activity. It may seem odd that edema, the holding of water in the tissues, goes along with an opposite sounding symptom, dryness of the skin, hair, and fingernails as well as constipation.

How many times have you heard that old people are forgetful and confused? Some of these are probably hypothyroid and don’t know it. When you look at the list of symptoms, you will find things like inability to concentrate and loss of memory, which often is noticed more by the people around us than our noticing it ourselves. Your brain is not working at full speed when hypothyroid.

It is very common for people not to recognize the symptoms. If we are not told to be checked every year or that a particular combination of symptoms may be a thyroid problem, we are likely to blame fatigue on other things: after effects of anesthesia from surgery, multiple surgeries that have kept you weak and tired, loss of sleep, too much to do, taking care of a sick relative, or just overdoing it yesterday are typical reasons to use. You might have said, “I’m so tired, I just can’t think straight today.” and yet still overlook it on a list of symptoms because those other problems do cause fatigue and you think that is why you are tired all the time. When someone reaches a point that fatigue is taking over and affecting the quality of life, then something is wrong. It may be mental, physical or emotional, but a thorough checkup to see what is wrong would be in order and that should include the thyroid check.

Depression is one of the worst symptoms and the one we are least likely to discuss. Many people think they are depressed because they don’t feel well or have to worry about money or kids or because they have lost interest in so many things they used to enjoy, even sex. Just having mild thyroid failure can cause depression and this is one of the hardest symptoms to pinpoint.

Other possible physical symptoms are muscle weakness, muscle and joint aches, pains, arthritis, slowed heart rate, intolerance to heat or cold, feeling cold when everyone else is comfortable or even uncomfortably warm, cold hands and feet, low temperature reading upon awakening (97 range) and a low pulse (well below 80).

You may have been to the doctor, who found high cholesterol and high triglycerides test results but, if you are hypothyroid, cholesterol will often be high so doctors should wait till your thyroid is right before using cholesterol test results to put you on medication for that separate problem.

Hardly anyone has ‘all’ of these symptoms but you may have a combination of them with one or two seeming to be of greater importance. If you think you might be hypothyroid, get tested, and if you are not, it is still wise to get checked again in a year or sooner if you start having some of these symptoms.

For thyroid, like other lab tests, it is wise to get a copy of the tests and start a folder so you have a running medical record. Your doctor’s office will be glad to make you a copy, so ask for one while you are there.

Many other tests can be affected by what is going on with your thyroid since it regulates your metabolism. When they do the blood test for cholesterol, triglycerides, and glucose, you need to fast to accurately compare from one test to another because what you have just eaten will effect the results. Thyroid function does not need to be a fasting test.

Synthroid is the most common prescription given and it, along with similar medications, is a miracle worker for us. They are inexpensive and we can’t say that about many medicines these days. This medication is one you will take daily for the rest of your life although the dosage may be changed. At first, you will be checked with some regularity (mine was 3 month intervals) to settle on the right dosage.

Many of us take our one-a-day pill by itself, in the morning, on an empty stomach at least an hour before eating or taking other medications. Be particularly careful of taking vitamins with iron or calcium any time near the thyroid medication since it will interfere with the working of the medicine. Take that after breakfast instead of before.

I have my Synthroid by my bedside and take it upon awakening. I will drink coffee but stay away from my calcium fortified orange juice until “at least” an hour after taking the Synthroid. If I awake early, I’ll take my Synthroid and roll over for another nap. It is ok to wait longer than the hour.  It should be taken every day but if you miss a dose, don’t double up.
by Pat Sanders (From HEADLINES)

Dry skin

One of the problems and symptoms of hypothyroidism is very dry skin.  Others tell me that chemotherapy also leaves this same symptoms and so does radiation. These also can leave you with yeast. You need to find out what is causing it, but , in the meantime, some of our members had a discussion of what remedies to use to ease the skin dryness.

This discussion was started by Sarah A, who wrote:I am taking erbitux as a chemo drug and my latest side effect is the skin on my fingers is cracking and causing painful cuts. It hurts to touch things, which is not helpful for getting all my holiday crafting done! My oncology nurse recommended liquid band aid but I find this quite annoying… Like when you accidentally touch crazy glue. Another nurse mentioned soaking my hands in a vinegar solution but couldn’t remember how to make the solution. Has anyone here heard of this?
Sarah

1. We all have our own “best” product for dry, cracked skin, particularly on the hands. My best product is Beauchamps Hand Lotion. It’s very liquid and does not seem like it would do much, but it really is a miracle worker. It probably could be used on the feet or other places, but I would not use it around the stoma – it has camphor as an ingredient. It comes in 8 oz. and
16 oz. bottles. 8 oz. lasts me a year.

It is compounded in a drug store in Rutland Vermont and is only available there and on line at www.beauchampshandlotion.com.
Carl Strand ’93

2. I have found a product called O’Keefe’s Working Hands (green colored canister) and also O’Keefes Working feet (blue colored canister) which works wonderful as I have serious problems with my fingers cracking open and bleeding during the dry winter months in Minnesota, maybe due to all the lymph glands I have had removed during to cancer surgery operations to insure there was no further spread ? My son has the same type issues with his feet. This product is used by many in the “trades” whose hands are subject to severe treatments or chemicals which is where I found out about it and started buying it at a local auto parts store. They told me a lot of Mayo Clinic Dr.’s also purchase it as they have so many hand washings and use of hand sanitizers. I have found it available at most Walmart’s, Targets, Ace Hardware’s, Home Depot’s and Lowe’s, $6.00 to $7.00 a container. So the accessibility should be good for most in the USA anyway. It sure would be worth a try for the price for anyone experiencing dry skin issues.

It also was recommended I use a product called Aquaphor during my neck radiation to help with the dry skin on my radiated neck.

Wild Bill from the “State of minus zero Fahrenheit; fridged Minnesota

3. re cracking and painful finger cuts. I had the same problem for years until I found Bee Balm which she can get from Vermont BeeBalm Co. Their E mail is vermontbeebalm.com It does not sting, verysoothing. I know you will be pleased. This year I have not had anycracking. I am now, thank God, four years since becoming a lary . In July I celebrated my 90th.
Marilyn Schlossberg

4. This is my experience with Erbitux. My hands cracked severely, as did the heels on my feet. I tried the meds the doc gave me with little success, and finally found the best hand creme I could get my hands on and rode it out. (Nurses know the best brands; also there are prescription lotions.) When you put the creme or lotion on at night, wear socks and knit gloves to allow it to saturate your skin.
Jim Miller

5. I take Xeloda and have a similar problem. I use hand cream twice a day which helps some. The lotion that seems to work the best for me is Ahava for hand and foot. Lotioning and then wearing gloves at night also helps some. I’d be interested in any other suggestions, also.
Neil Arnold 8/2011

6. In response to the post about dry hands and fingers during chemo treatments, I would strongly recommend a product called O’Keefes working hands. You can purchase it on Amazon for about $7-8 and it isa real lifesaver. I am currently going through chemo myself and this stuff worked on my hands in about 5 days.
Randy Neidich

7. I have found Palmer’s Cocoa Butter Formula effective.  I like the thicker kind in the jar.  It used to be found at Dollar General for $3.50 a jar, but I see it in a lot of other stores now so I’ll bet the price is up. Still worth it.. Lasts a long time.  I don’t need it as much as I used to. Yeast meds took care of extra dry skin, hair, nails and I am not hypothyroid anymore.
Pat Sanders – 3/1995

SITES FOR THYROID PROBLEMS

To educate yourself further on this subject, try the Medicinenet.com site. This is easy reading and will answer most of your questions.
http://www.medicinenet.com/hypothyroidism/article.htm

There is a good index to this site which lets you find explanations of hypothyroidism and thyroid hormones. Symptoms, diagnosis, and treatments are also explained. At the bottom of that first page that they have a link to another index with additional Hypothyroidism related articles.

Looking at the sketch on the first page of the medicinenet section on hypothyroidism, you can see the normal location of the thyroid gland right in front and around the trachea. You can see exactly why it is disturbed to remove the larynx, right behind it and when reworking the trachea to end at the new stoma. You can also understand why radiation to the larynx also can damage the thyroid.

Lynphedema

The Lymphatic System, Part 1 – Video

Published on May 31, 2012
This is part 1 of the VHSG Advanced Biology course presentation on the lymphatic system. The Virtual Homeschool Group (VHSG) project is created and run by volunteers so that free online courses can be offered to families that home school their children. It is freely available for use in other projects and schools as a Creative Commons Licensed resource (CC-BY-NC-SA). See the last slide for details.

The Lymphatic System, Part 2 – Video

Published on Feb 21, 2013
In part two, we will be examining the immune system.

MD Anderson Cancer Center

Head and neck cancer patients sometimes develop lymphedema, or chronic swelling, after surgery. This can affect speaking, swallowing, vision, breathing and self-image.

To address these side effects, Jan Lewin, Ph.D., and her team are using decongestive therapy to help manage lymphedema symptoms.

WATCH her discuss this lymphedema therapy:

http://www.youtube.com/watch?v=S-D2gMu8gpo

Self Massage for Lymph drainage

We have had many of our members talk of the heavy fluid build up in the neck area.

My Massage Therapist suggested these videos on Youtube.com for help in Lymph drainage. It is very light touch and if you watch and learn how, please remember that deep or heavy touch does not, in this case, do the good that light touch does.

Lots of reading material in the blog section of this website: http://www.massagebyheather.com

Learn to drain your own head! Use these lymphatic drainage massage techniques from Louisville massage therapist Heather Wibbels, LMT on yourself to reduce congestion and sinus pressure in the head. This is great for allergy sufferers and people with head colds.

1. Self Lymph Drainage Massage
http://www.youtube.com/watch?v=QA-wi0d7-Ro&list=PLDEF532905455E4CD

2. Lymph Drainage for the Ears

3. Self Lymphatic Drainage for the Arm
http://www.youtube.com/watch?v=3PmHuanqbAQ&list=PLDEF532905455E4CD

4. Self Lymphatic Drainage for Abdomen & Trunk (part 1)
http://www.youtube.com/watch?v=rMljOuz_l_Q&list=PLDEF532905455E4CD

5. Self Lymphatic Drainage for Abdomen & Trunk (part 2)
http://www.youtube.com/watch?v=UCtoV3ayLu0&list=PLDEF532905455E4CD

6. Self Lymphatic Drainage for the Legs
http://www.youtube.com/watch?v=ZLyT_0Tr40M&list=PLDEF532905455E4CD

Hints from our membership

The following tips can help reduce your chances of experiencing head and neck lymphedema or decrease the severity if it does occur.

1. Exercise helps lymph drainage. However, in some people, strenuous exercise can cause or worsen swelling. Ask your doctor or therapist when you can start exercising, which exercises are right for you, and whether you should wear a compression garment during exercise.

2. Sleep sitting up. Prop yourself up with pillows in bed. An upright position improves lymph drainage.

3. Prevent skin infection. Avoid cuts, burns, needle sticks, or other injury to the affected area. If you shave, use an electric razor to reduce the chance of cutting the skin. When you are outside, wear sunscreen with a high sun protection factor (SPF). If you do cut or burn yourself, wash it with soap and water and use an antibiotic cream as directed by your doctor or nurse.

4. Wear loose fitting clothes. Don’t wear tops with a tight neckline.

5. Limit time in extreme heat or cold. Avoid hot tubs or saunas, and limit hot showers to less than 15 minutes. Also, don’t apply a heating pad or ice to the swollen area.

6. Know when to seek medical care. Call your doctor or nurse if you have any signs of infection: a fever (temperature over 100ºF); skin that is hot to the touch; or skin redness, swelling, or pain.

National Cancer Institute

The National Cancer Institute treatment guide suggests the following to help treatments:

• The goal of treatment is to control the swelling and other problems caused by lymphedema.
• Treatment of lymphedema may include the following:
• Pressure garments
• Exercise
• Bandages
• Skin care
• Combined therapy
• Compression device
• Weight loss
• Laser therapy
• Drug therapy
• Surgery
• Massage therapy
• When lymphedema is severe and does not get better with treatment, other problems may be the cause.

ON LINE RESOURCES

National Cancer Institute – General Information About Lymphedema http://www.cancer.gov/cancertopics/pdq/supportivecare/lymphedema/patient

American Society of Clinical Oncology (ASCO) – Head & Neck swelling http://www.cancer.net/all-about-cancer/cancernet-feature-articles/side-effects/head-and-neck-lymphedema-swelling-after-cancer-treatment

There are so many that have had treatments to the head and neck that end up with lymphedema. This site might be helpful for those who have this problem.
The website is www.lymphnet.org
Rita in NJ

Nebulizer Usage

How to Use a Nebulizer – And Other Pulmonary Solution

One of the challenges of being a laryngectomee is how to do things like use a nebulizer, and inhaler, to promote better pulmonary health, and we often get questions about how to take a pulmonary function test (PFT). I recently had a PFT and in the process (with a little experimentation) learned a few things that might be helpful to some of you. My primary concern was how to effectively use the nebulizer so let’s start with that.
At first I was given a pediatric mask to go over my stoma, which was hooked up to the nebulizer. While this worked there was also quite a bit of leakage around the edges so it was replaced with a trach mask. That was big improvement with less leakage but for the best results you need a direct, sealed shot into your stoma. Something like a face breather taking the medication directly into the mouth, but actually better since in our case the medication doesn’t have to travel through the mouth and throat before it reaches the trachea.
There are basically 3 ways to get a direct shot into the trachea although other variations may be possible.

1. A nebulizer can be connected directly to a lary button/tube like the Barton Mayo or the Atos Lary Button if you have a Hudson RCI, Multi-Adapter (H1422) as pictured in the illustration. You can purchase these at numerous places for about $2.50 with an internet search. I got mine at www.DirectHomeMedical.com. One end of the connector goes into the flex hose of the nebulizer kit, and the other plugs into the lary button/tube. (See Pictures below)

2. If you use an HME base plate then you can also plug the adapter into them just like above. In my case the base plate works a lot better because the connector sits deeper into it than with the lary button/tube. The base plate holds it more firmly whereas with the button or tube you have to hold it perfectly in place or it will slip out.

3. The third option, which I haven’t tried, is a special HME that has an oxygen port built into the side of it. In this case you don’t need the flex hose or the adapter. You use a trach mask set-up and plug the oxygen tube directly into the HME port. These special HMEs were available from Boston Medical. I can not find them on the site, so I am not sure they are still available.

Trach Mask Configuration

Base Plate/Stoma Button-Tube Configuration

This last picture is a Symbicort inhaler that is plugged into an extender, then the Hudson adapter is plugged into the extender, and then a baby bottle nipple with the tip cut off, is attached to the end. The nipple is then inserted into the stoma and you spray whatever medication you use into the extender. Some medica-tions work best when the spray has a chance to “mist” before it reaches the trachea, so the extender allows space for it to mist. The above set-up does a great job of this but it had to be modified a bit, and there are many types of extenders out there that this may not work with. So this is just something to help you visualize what may work in your case.

Finally, we get back to the elusive Pulmonary Function Test that many of you have been told can’t be done on a laryngectomee, or that the respiratory specialist doesn’t know how to do it. But rather than me trying to ex-plain it all I will refer you to a great video made by our own Bill Cross that shows you how to do it. So watch the video at:
https://www.youtube.com/watch?v=5KzuMLB6WrA
Then order yourself a Hudson Adapter, get a base plate or stoma button, and educate your respiratory specialist if you ever need to do the test.
Jack Henslee

Pulminary lung Fuction Test

Being a Lary and needing a Lung Function Test, for COPD, yes you can do the test. They might say they can not do one on a neck breather but they can, I have had several done. If they hand you the nose clip they have no idea you are a total neck breather. You might need to show them the separation photo. You can also use a Spirometers to exercise your lungs even.

If you can wear a baseplate for only an hour or two you can do the Lung Function Test. This will work with a Lary Button if you get a really good seal. You will need a baseplate and 3 parts. They have them in the pulmonary dept but might not know it will work. You need a 22mmx22mm OD cuff adapter [cost $0.46] 12 inch piece of the blue tubing they use for moisture or a nebulizer, [cost $1.15], and the Filter which does two things. It is a barrier filter and protects their machine from bacteria and is also the adapter to hook up to their machine. [Cost $1.55] It is 22mm on one end and 25mm tapered on the other end. That 25mm is what hooks up to their machine. Total cost is $3.16 and freight if you order them from https://www.vitalitymedical.com/multi-adaptor.html

You want to keep the parts if you got them from Pulmonary. They charged you in the test price so you own them and they will just throw them away. They can be used to smell and blow your nose if you only use the tubing and 22mm adapter and the other end goes in your mouth. All three parts can be used for surgery and the anesthesiologist can put you out and she has to add air to the oxygen. I have used this when I had knee surgery.

Now they have a smaller new machine and that is a bit tougher for Larys, but you can do it also. The “New” one the mouthpiece is larger and oval. Also, you can not use the blue tubing as it will not work well with the tubing. That new one you need to force it onto your baseplate then attach the baseplate to your neck. When done you can hold the baseplate and remove the mouthpiece and the base can stay on if you want. That one is much smaller and the Doctor will have it in his office. It was funny that my lung doctor gave me a mouthpiece and said to take it home and “do your MacGiver thing”. If it will work we can do it here in my office, If it won’t work for you we will need to do outpatient at the hospital. It did work and I got a very good test. The Tech that did this test was the same one at the hospital that did my other test.

Thank you to William Cross for this information.

Here is a video I made to show how to get tested.

Neck and Shoulder Dysfunction

Introduction

When we have surgery – no matter how extreme or routine our particular surgery may be, there is cutting involved. In order to reach the site of our cancer, and remove it, our physicians must cut through tissue – skin tissue, muscle tissue, nerve fibers. In some cases, major nerves and muscles will need to be cut or removed. While our body has an amazing ability to mend itself and continue growth, it is reasonable to expect there to be scars – evidence of the trauma the body has been through – both internal and external.

This section discusses the neck and shoulder dysfunction that can be a common consequence of laryngectomy surgery. In many cases, the problems correct themselves with time as our bodies heal and adapt. Sometimes, the problems require additional medical treatment. Because each surgery is unique to the patient (no one person’s cancer is in exactly the same area, the exact same size,shape or stage), each problem will be unique and will need to be addressed in a manner unique to you. Many times, trying several different things to see what works for you in your situation, is the only “attack plan” there is.

So does this mean you have to learn to “live with” the problem? Hello? We are Laryngectomees! We lose our vocal chords, yet we “Shout from rooftops,” sing in the middle of crowded city streets, and otherwise find ways to make our voices be heard! Keep an open mind, work with your doctor, use resources, such as the WebWhispers email distribution list and this library!. Don’t give up!

Causes/Explanation

Shoulder dysfunction – loss of shoulder function is a potentially distressing consequence of neck dissection. This may cause a significant loss of shoulder flexion and abduction, and shoulder pain and drooping may also be a problem.

This restricted range of movement of the shoulder, and loss of function can impact on all activities of daily living related to shoulder function; for example, washing, dressing, combing hair, writing, reaching for objects above shoulder level, reaching into cupboards, hanging out washing, etc.

Severe pain in the neck and shoulder (s) may also occur as a consequence; and this pain often increases when moving the shoulder and lying on the affected shoulder. Neck tightness, stiffness, loss of sensation in the neck, or a feeling of constriction and restricted range of movement may also be a problem.

This can impact on everyday activities, such as turning the head to watch for traffic and other dangers. The appearance of the neck may also lead to psychological problems.

Insights from professionals

Pain and numbness after neck dissection

In doing this operation [neck dissection] it is necessary to indeed cut the nerves responsible for feeling in that side of your neck. The area of numbness likely extends from your ear down onto your neck then onto the upper chest and the top of your shoulder. Unfortunately, the numbness is permanent to a large degree. The actual area involved may over time decrease in size as sensory nerves grow into the numb area from surrounding normally sensate areas.
The weakness that you have noticed in your right shoulder is also from sacrificing another nerve in the neck, the spinal accessory nerve, which supplies the trapezius muscle on your back. The trapezius muscle helps you to raise your shoulder when you raise your arm. You have probably noticed that you have difficulty working above your head with your right arm. This is because you have difficulty raising your shoulder. The pain in your right shoulder is from stiffening in the capsule of your shoulder joint and also from some slight downward displacement of the shoulder from loss of the trapezius. The only real remedy for this is a vigorous program of exercise that is designed to strengthen the other muscles that help the trapezius to raise the shoulder.

The tightness and stiffness in your neck is indeed scarring in the soft tissues. Several factors have contributed to the development of this problem:

1. Radiation therapy causes fibrosis in the tissues under the skin, the amount of which can vary from patient to patient.

2. Surgery also can cause scarring.

3. A fistula and its repair can be a contributing factor.

Each of these things can lead to the problem, but when they occur together, the problem is made much worse. Use stretching exercises and massage to loosen the scarred tissue. This is going to be a slow process, like 6 months to a year, but it should loosen up some if you work on it. From: Dec 1997, HeadLines: The Doc on E-mail!!!
Glenn E. Peters, MD

Shoulder Dysfunction

The nerve that [we] are talking about is the “spinal accessory” nerve and it makes the trapezius muscle work. The trapezius muscle allows you to raise your shoulder, and thus your arm, over your head. Injury (or removal) of the spinal accessory nerve results in what we call the “shoulder syndrome” and it is characterized by pain and stiffness in the shoulder and the inability to easily raise your arm above your head. The spinal accessory nerve is not cut as a routine part of a standard laryngectomy. It is taken, however, as part of a radical neck dissection to remove lymph nodes that are involved with metastatic cancer. Most surgeons will do what is known as a modified neck dissection wherein they try to save the spinal accessory nerve to avoid the shoulder syndrome, but stretching the nerve to remove the lymph nodes around it can make it function poorly none the less. These days, more nerves are saved than sacrificed.
Glenn E. Peters, MD

Radical Neck Dissection

The radical neck dissection is the most comprehensive operation that can be done for cancer in the cervical nodes. It is a complete clean out of all node bearing groups and also involves the removal of the internal jugular vein, the sternocleidomastoid muscle, and the spinal accessory nerve that goes to the trapezius muscle. Obviously, this can result in a cosmetic deformity in the neck and more importantly weakness in raising the shoulder and arm from sacrifice of the spinal accessory nerve.
Glenn E. Peters, MD

Treatments

“The best treatment for the shoulder syndrome is exercise. Without use, the shoulder will become stiff and ache. The longer you wait to begin exercising, the stiffer and more sore the shoulder will become. This starts a vicious cycle of ever increasing pain and stiffness. So exercise the shoulder and strengthen other muscles to compensate for the loss of the trapezius. A perfect example of the type of exercise would be to imagine you were using a paint roller to paint a wall. Other folks like to use a pulley or a towel thrown over a door. The goal is to get that arm up above your head. A consultation with a physical therapist may also be beneficial. “
Dr. Glenn E. Peters

ARTICLES

PubMed link on shoulder pain

“The most common complication of neck dissection is shoulder dysfunction due to manipulation of spinal accessory nerve, resulting in trapezius muscle atrophy mainly in procedures involving the posterior neck triangle.”

https://www.ncbi.nlm.nih.gov/pubmed/21537629
Look to the right-hand column of the page for more articles on the subject.

TREATMENT: MASSAGE & STRETCHING

Can’t move like you used to? Having a laryngectomy can cut into muscles and nerves that affect the way your shoulders move. Many of us have had the spinal accessory nerve cut, although some surgeries spare the accessory nerve. If you are having trouble with shoulders, you need to know what this can do.

Here is the definition from Medicinenet.com and you can find more information there:

‘Accessory nerve: The eleventh cranial nerve, which emerges from the skull and receives an additional (accessory) root from the upper part of the spinal cord. It supplies the sternocleidomastoid and trapezius muscles. The sternocleidomastoid muscle is in the front of the neck and turns the head. The trapezius muscle moves the scapula (the wingbone), turns the face to the opposite side, and helps pull the head back.’

‘Paralysis of the accessory nerve prevents rotation of the head away from that side and causes drooping of the shoulder.’

I have this problem. Massage helps, especially if done by an expert. Stretching helps even more because it is done daily, by you, and how much you improve is controlled by how much you do for yourself.

Do we have it in writing so you can try it? You bet we do. It has been tucked away in the HeadLines section, with all of you being reminded, every now and then, that there is a download there that can help you. But we have a lot of new members coming in and old members don’t bother until they notice how bad their shoulder is getting. So here is another chance to help yourself. Download this file. Don’t try to do everything at once. Pay particular attention to your posture and do the best you can.
Pat Sanders

STRETCH AND STRENGTHEN
By Shari Aizenman

“Welcome back! This is the first in a series for and about you. I am Shari Aizenman, a massage therapist in Atlanta, GA and Birmingham, AL. I have been in practice for twenty-two years now and have had the opportunity to work with thousands of people in a variety of situations. I specialize in recovery from injury and illness and incorporate the following exercises into my client’s healing programs.

In my previous series, Massage and Stretching, I focused on relaxing and stretching as a part of an overall wellness program that anyone can integrate into their daily routine. In this series, Stretch and Strengthen, I will focus on a little more of an active and energetic role you can have in your wellness program. The first routine is more specific to the upper body. Subsequent routines will address other areas of the body.

Remember that each of us is different in many ways, and each of us can respond in a variety of ways to different stimuli. Let your body be your guide, and if you have any doubts or questions regarding beginning an exercise program of any sort, please consult your physician. These stretches and strengthening moves are designed get your blood moving, your muscles flexible, joints well-oiled, and your mind clear in a relaxing, comforting way that is also energizing.

Many of the stretches in this program can be done while sitting in a chair, while others require you to be standing near a wall or in a doorway. You may need a yardstick as a tool to assist in passive stretches.

Here we go! Begin by sitting in a chair, your feet firmly planted on the ground with your back supported. (Have these instructions nearby.) Gently allow your head to lead your spine into lengthening. You can imagine a string coming from the crown at the top of your head (that’s an imaginary place where, if you draw a line from ear to ear across the top of your head, the center would be). Use this visualization of a string to gently lift your head, letting your chin drop and your jaw relax, while your head lifts up and up and each of your vertebrae separate. Get as tall as you can through your spine, your shoulders relaxing, and feel your ribs expand as you inhale. Then, allow your breath to relax and take a rest. Repeat this three times, feeding your body oxygen, preparing it for this routine.

As you sit with your back supported, relax your arms over the sides of the chair. Raise your right arm in front of you, palm up, as high as you can. When you reach your highest point, stretch your fingertips toward the sky, allowing your arm to separate away from your shoulder. Your palm will be pointing backward. From your shoulder, turn your arm in the shoulder socket until your palm is facing forward, and continuing to stretch your fingers out, lower your arm slowly to the side of the chair. Take a breath, and on the next inhale, raise your arm again, reaching and turning when you reach the top, a total of three times. Rest if you need to, and never work to the point of exhaustion. Repeat with your left arm.

Next, as you inhale, raise your arm out to the side, palm up, until your arm is next to your ear. Reach up with your fingers, turn your arm in the shoulder socket, and, palm facing down, slowly lower your arm to the side of the chair. Repeat for a total of three, rest, and repeat of the left side.

Here comes the strength part! Clasp your hands together on your lap. Stretch your arms straight out in front of you and on an inhale lift them together as high as you can. Hold for a count of ten as you relax into your breath and lower your arms slowly. Repeat for a total of five. Rest. if necessary, then place your palms on your knees. On an inhale, stretch your arms straight in front of you, lock your elbows and raise your arms at the same time as high toward the sky as possible. Hold for a count of ten and lower them slowly. Repeat for a total of five.

Last in this group is resting your arms out to the sides of the chair, and on an inhale, raise your arms, palms facing the floor, toward each other until your arms are touching your ears. Reach tall with your fingertips and slowly bring your arms back to your sides. Repeat for a total of three. Rest for a moment, then turn a few circles with your wrists, shake your hands out and shrug your shoulders ten times to let your body know that this portion of the exercise is over.

Time to use your yardstick! Stand with your feet a bit more than hip’s width apart. Allow your knees to relax and hold the yardstick in front of you, hands side by side, palms facing down. On an inhale, lift the yardstick out in front of you until it is directly in front of your shoulders. Then gently twist at the waist toward the left, moving your upper body as a unit, as far as is comfortable. Breathe while there, lowering the yardstick and raising it again for the trip back to center. Now bring the yardstick back down, rest and repeat in the other direction. Go to each side a total of three times. Rest the yardstick against a wall and rotate your arms in windmills, making three big circles in one direction and then the reverse.

Pick up the yardstick and this time spread your arms out to the ends. As you inhale, raise the yardstick above your head and twist your body at the waist toward the left as far as is comfortable. With the yardstick still above your head, gently turn toward the right as far as you can. Once there, inhale and come back to center. Lower the yardstick, take a rest and repeat three times. Do a few windmills with your arms, rotating slowly through the shoulders to loosen and oil the joints. Then go in the opposite direction.

Are you sweating yet? Remember that you can design this program to fit your own needs. If a specific move causes discomfort, modify it or omit it. Are you resistant to trying something? My thought is this: What you resist persists! Let go of whatever is keeping you from at least trying and go for it! Also, it may help to make sure you do gently rotation movements through the shoulders after doing exercises where the arms are above your head. This keeps the joint well-oiled.

Rest for a moment. Walk around and give your legs a little exercise. Keeping the blood flowing throughout the entire organism (your body) is the best way to retain optimal health! Clap your hands together and then rub them together and then the backs of them to allow friction to get blood flowing down into your fingers.

For this next set of movements, you will need to stand next to the smallest doorway you can find. If you can reach the top of the door, hook the fingertips of your right hand over the end of the door. Then gently bend your knees to stretch the arm forward. Then lean forward to flatten your armpit against the edge of the door. Do not lean backward. Hold this stretch to the count of ten. Gently lower your arm, shake it out and repeat for a total of three stretches. Change arms and repeat on the other side.

Now stand in your doorway with one foot six inches ahead of the other. Bend your elbows 90 degrees and put your palms, forearms and elbows against the outer doorjamb. Gently lean onto your forward foot, allowing a little of your body weight to stretch your chest muscles outward, as you move forward. Remember to move from your center, belly button going straight forward and no arch in your back. Once you get to a comfortable stretch, hold to a count of ten and come back to the beginning point. Repeat the stretch for a total of three with your first foot forward, shake your arms out and repeat with the other foot forward.

Last in this series is to give yourself a variety of modified hugs. Reach your right arm across your chest toward your left elbow. Grasp your left elbow and pull it across your chest with your right hand, stretching out the upper shoulder. Assist the stretch by reaching around your waist with your left hand. Hold this to a count of ten and repeat five times, alternating sides with each stretch. Then reach across your chest as far as possible with your right hand toward the back of your neck, then grasp your right elbow with your left hand and hug your elbow further across the body and flat against your chest. If you want, you can give your left shoulder a squeeze with your right hand. Repeat this stretch a total of five times on each side, alternating sides with each stretch. Complete the stretch with a few windmills.

Finally, rub your hands, arms and shoulders briskly and give yourself a hand! Good job!

Pat Sanders, April 2008

Tips From Our Members

1. Please remember to discuss any treatment regimen with your physician before beginning any exercise program.

2. Standard advice on exercise is to avoid pain. The “no pain, no gain” saying is a myth. Move until you reach your current limit, hold it, and then move just a tiny bit past that point. Over time you will gain more and more range of motion.
David Blevins, 2006

3. Some neck exercises I regularly do are to turn my head to the left and right, tilt my head towards my shoulder (ear to shoulder, both sides…don’t lift your shoulder), look down/look up, move my head to look at my shoulder (both sides), raise each hand over head and raise my head to look at my hand, look left and then in one continual motion look down and to the right and — repeat. One NOT to do is the “Egyptian” or “turkey” head movement. Don’t move your head in any unnatural direction or position.
David Blevins 2006

4. A well known physical therapist from Mayo Clinic spoke about this very subject at an IAL Annual Meeting. She helped several folks in the audience by demonstrating that by simply hooking your thumb into the belt, belt loop, or pocket, you can relieve the downward pull of a hanging arm and shoulder following neck dissection. The another simple exercise to help raise your arm with a ‘frozen shoulder’ is the finger walking up the wall that mastectomy patients use. I’ve seen significant improvement noted by other club members who have tried these easy suggestions.
Elizabeth Finchem, 2006

5. Some good shoulder exercises are found in the “Move it or Lose It” videotape/DVD available through the IAL.
David Blevins, 2006

Here my experience with what might have turned out to be chronic pain:
Before the operation the doctors had warned me about possible shoulder problems including chronic shoulder pain. Sure enough the nerve to my right shoulder was damaged in the operation. Seemed to me there was pain whenever I tried to lift the right arm.
I was also very aware of anxiety about this – would I be able to look after myself … would it get worse … etc etc. I went to physio and though she gave me exercises to do she said I had to expect restrictions to how well the shoulder would function now that some of the nerves had been severed.
Gradually the anxieties went away, and so did the pain. The movement and strength is still restricted but I’ve adapted pretty well.
I practice mindfulness and have often been struck by how difficult it is to separate mental and physical pain. The tension caused by anxiety can be physically painful. I wonder how much of my earlier shoulder ‘pain’ was caused by anxiety? And if I hadn’t been practicing mindfulness, would those anxieties have persisted and resulted in chronic shoulder pain?
This is by way of encouraging anyone who suffers from chronic pain to think about doing a mindfulness course e.g. MBSR (Mindfulness Based Stress Reduction) which was developed initially for people with chronic pain but now recommended in many areas of medicine and for general well-being.
Regards,
Noirin, Dublin 2013.

posted 3/2019

Some members have reported some help with neck pain by the use of Theraworx topical spray. I found it at my local pharmacy.
https://theraworxrelief.com/faq/

If you are in the hospital and cannot get your Lary tube back in, contact anathesiolgy. They have various sizes of tubes that can help keep the stoma open and maybe steach it to enable getting the Lary tube back in.
Pam Ridgeway posted 04/2023

Pain Management

Pain management can be a very complex issue. Pain can be defined in several ways but is usually divided in Chronic or Acute pain.

The types of pain are explained at the Cleveland Clinic site:
http://my.clevelandclinic.org/services/anesthesiology/pain-management/diseases-conditions/hic-acute-vs-chronic-pain

A pain quiz might help you understand the pain and aid in talking to your doctor about it. The quiz can be found at Medicine.net. http://www.medicinenet.com/pain_quiz/quiz.htm

The following links may help the understanding of pain management:
http://www.painmed.org/Library/Clinical_Guidelines.aspx

The following is a very good article from the Readers Digest on the alternatives to opioids in pain management. It discusses what to talk to your doctor about and when they are appropriate.
https://www.rd.com/health/healthcare/opioids-after-surgery-survey/?_cmp=readuprdus&_ebid=readuprdus7172019&_mid=291445&ehid=E8334BBEDD42E7E0B9BED6419070C123574A733B

Peg and Feeding Tubes

Feeding Tube Placement

If you are a candidate for receiving a feeding tube, you may want to review the following article from Web MD about preparations for getting a feeding tube. It tells you the exact procedure and what to expect.

“If a person is having trouble swallowing and can’t consume enough food or liquids by mouth, a feeding tube is put in through a procedure called percutaneous endoscopic gastrostomy (PEG). During the procedure the tube is placed in the stomach for enteral feeding (feeding directly through the gastrointestinal tract) to occur.”

http://www.webmd.com/digestive-disorders/feeding-tube-placement
Hank Luniewski

There are two kinds of G tubes. A percutaneous endoscopically-placed gastrostomy tube (PEG tube) is placed in the GI lab and is held in place by a flexible “mushroom” on the inside to keep it from coming out and a “button” on the outside to keep the mushroom snug against the stomach wall to prevent leakage around the tube and to keep the tube from sliding in too far. The other type of G tube is placed by the IR people and is held in place by a balloon filled with saline. It also relies on a “button” on the outside to keep the balloon snugly against the stomach wall to prevent leakage and keep it from slipping too far in. In either case, the button should be tight enough to be snug but loose enough that the tube can be freely twisted, which should be done at least daily, to prevent adhesions. If a balloon deflates and the tube comes out, you can replace it with a spare if you have one, otherwise, rinse and replace the old one and tape it in place until you can get to a clinic to have it replaced. If you have the mushroom type, the chances of it coming out are far less as the mushroom can’t deflate.
Written by Richard Theyerl and posted on Facebook.

What is a PEG tube

Percutaneous endoscopic gastrostomy (PEG) is a surgical procedure for placing a tube for feeding without having to perform an open operation on the abdomen (laparotomy). It is used in patients who will be unable to take in food by mouth for a prolonged period of time. A gastrostomy, or surgical opening into the stomach, is made through the skin using a flexible, lighted instrument (endoscope) passed orally into the stomach to assist with the placement of the tube and secure it in place.

Here is an article that discusses the procedure.
http://www.medicinenet.com/percutaneous_endoscopic_gastrostomy/article.htm
Sent in by Scott Sysum

PEG TUBE CARE

(PERCUTANEOUS ENDOSCOPIC GASTROSTOMY)
TIPS FOR SITE CARE

(Be sure to check with your MD/Nurse regarding specific procedure for you)

CLEAN AND CHECK AT LEAST TWO TIMES A DAY

* Clean around tube at insertion with soap and water
* Rinse and pat dry
* Check the area for any changes such as redness, swelling, discharge, warmth or soreness.
* Notify your MD or Visiting Nurse. (It is important that you are familiar with your insertion site and the area around it. You will then be able to detect if something is not “normal” for you. Never treat the inflammation yourself).
* Cut a 1 1/2″ slit in a 4×4 gauze sponge
* Place gauze on abdomen and around tube. Secure with tape.
* Coil feeding tube and secure with tape
* Be sure to leave 4-5″ free as this will make it easier to access

FEEDING TIPS FOR PEG
(Check with MD/Nurse for your specifics)

* Flush before feeding (Minimum of 60cc of tap water before and after feeding. I used 120cc for each flush. Use large syringe or run through feeding bag).
* Make sure roller clamp is closed (down) on the feeding bag.
* Put formula in bag
* Prime tubing to purge air if needed (place end of feeding bag tubing over sink or trash can. Open roller clamp and allow formula to come to the end. Close clamp)
* Connect feeding bag tubing to PEG Tube
* Open clamp and administer feeding as ordered.
* Flush feeding tube after feeding.
* HINT-Rinse feeding bag and tubing with water and allow to air dry.

MEDICATION FEEDING TIPS FOR PEG TUBE

* Get supplies together (syringes, medications and tap water for flushing)
* Crush medicines that are not in liquid form. If capsule can be opened, empty contents in small amount of water and do the same to crushed pills and let dissolve. (Use pill crusher or mortar and pestle to crush pills)
* Flush, put liquid medications into syringe and then put into the feeding tube, flush again

NOTIFY MD/NURSE IF

* You cannot *flush tube
* You see formula leaking from insertion site
* Formula will not flow through tube from feeding bag
*(Flush – use warm water and large syringe. Make sure syringe fits securely at the end of tube. Gently push and pull plunger in syringe)
* Redness, swelling, warmth or discharge at insertion site.
* Fever
(Carole Rabin and Debra Rabin Abraham, MSN, RN, C)

FEEDING TUBES

TUBE FEEDING METHODS

When one goes on a feeding tube there are different ways of taking nutrition through the tube. In the hospital and in some homes a bag system is used where the bag of nutrition is suspended on pole above the patient and the food is fed in via a tube that has a regulating valve on it. This allows the food to be fed at a fixed rate to the patient so as to not upset the stomach.

The other method of tube feeding is through the use of a large syringe. The syringe can draw a nutritional fluid such as Jevity up into the syringe and then attaches to your feeding tube. The syringe of food in injected into your stomach by compressing the plunger on the syringe. You must be careful to inject the food very slowly, again so as not to upset ones stomach.

Many people prefer to not use the plunger and let the food go into the stomach via simple gravity feed. This results in the feeding naturally pacing itself so as not to upset the stomach. This is the method that I prefer.

I know a fellow who swears by the plunger method and force feeds various soups and other foods. One problem with that is that the tube can get clogged and be very difficult to unclog. In fact, he clogged it so firmly he actually had to go in and have a new tube put in his stomach.
Hank Luniewski

PERSONAL EXPERIENCE

I have had feeding tubes through the nose, through the TEP puncture, and of course the PEG or stomach tube. I found the tube through the nose to be the worst of all and I would never let them do that again if I had a choice. I have had a variety of stomach tubes, some easy to live with and others very difficult. The gravity fed tube: I found to be very slow and cumbersome. Of course you can vary different types of foods this way but since you can’t taste it, I could not see any benefit is using soft foods over just Ensure. It takes longer with this type of feeding than any other and requires a lot more cleanup. At other times I used a syringe with a plunger for feeding. This is ok but I found that I forced the food in too fast at times and it made me ill. Presently I use the syringe without the plunger. I pour the liquids in and let gravity do the rest. If the tube is clogged I use an air bulb the clear the obstruction. (You can also pour coca cola in the tube and it will clear about most anything). I have found this the best method of feeding for me. It takes me a total of 5 minutes to feed myself and the gravity keeps me from forcing it in too quickly.

Types of Stomach tubes

There are a wide variety of stomach tubes and I think I have tried them all at one time or another. I have found that the MIC-G, Gastrostomy tube is the best choice and the easiest for me to maintain. Some tubes are sewn to your skin; others have a hard rubber ridge inside that keeps the tube intact. The ones with the ridge hurts when installed or when they come out. The MIC tube has a bulb inside that is filled with water after insertion. It is no more than just discomfort when it comes out or when it is installed. In fact I install my own tube and do not need any assistance to do so. The instructions on the MIC tube recommends using 5-15cc of water. At first I used 15cc of water and the tube would last about 3-4 months before the bulb would burst and need replaced. I now put 5cc of water in the bulb and the tube lasts about 5-6 months before it needs replaced.

Care of the stomach tube

I went to the Mayo Clinic for 3 years before I found out they had a PEG Nurse who specialized in the care of stomach tubes. Until I talked to her I had no idea what to do to maintain my tube. Of course the doctors never tell you anything. The nurse showed me how to care for my stomach tube and even taught me how to change it out myself.

1. Wash the perimeter of the tube daily with mild soap and water.
2. Nearly all tubes will leak stomach acid a little. If the tube starts leaking more than normal, the nurse should be made aware and a larger diameter tube should probably be used.
3. Stomach acid will cause the skin around the tube entry to become red and irritated. Apply Calmoseptine to the reddened area and it will combat the stomach acid. If it becomes infected or real sore call the nurse and let her know.
4. A 4×4 gauze should be worn for protection until the incision for the tube is healed. Once the incision is healed a covering is no longer a necessity but can be worn if a person chooses to go to the trouble. Personally I haven’t worn a covering over my tube for 4 years now.
5. The biggest problem with a tube is it always seems to get in the way. The MIC tube has a round, plastic circle to keep the tube from going too far into the stomach. The large circle makes the tube stick straight out and it is bothersome. The nurse and I trimmed the circle and made it smaller to where the tube will hang down and not be so bothersome, yet it still is large enough to maintain it’s purpose. You can also get a belt made specifically for a stomach tube. It is an elastic belt with a pouch attached to put the tube in. I use it sometimes when I go hunting or fishing to keep the tube out of my way.

Important: When you have to live on a feeding tube ALWAYS make sure you are putting enough water into your system. I make sure that I always put enough water in when I feed myself that my urine maintains a clear color.

I am not a doctor and am only passing on what I have learned and my experiences.
Bill D. Hathcock

FACING LIFE WITH A FEEDING TUBE

#1 I just had my first dilation. It didn’t take and I am not a good candidate for repeat dilations. I have a feeding tube and can eat some soft foods by mouth. I may be on the feeding tube indefinitely. If I am, so be it. I certainly would not let that impact on my appreciation of quality of life. I can still live my life to the fullest and having to deal with a feeding tube and soft foods are not going to be allowed to be a problem.
Hank Luniewski
Charlottesville, VA

NUTRITIONAL REQUIREMENTS FOR TUBE FEEDING

There are various nutrition sources for tube feeding. The canned food that is put into a PEG tube is not for drinking. It tastes terrible. I use Jevity 1.5 which includes fiber in the mix. Other choices are available. A nutritionist will set you up before you leave the hospital with the food that is appropriate for you. This food, at least in my case, is payed for by my insurance and is provided by a home health care organization. Over the counter foods such as Ensure, Boost, Carnation Instant Breakfast, Skandia Shakes and others can be purchased at your local super market.

Subsisting via a feeding tube is not difficult or complicated. It is called Enteral Nutrition. The American Society for Parenteral and Enteral Nutrition (A.S.P.E.N.) is dedicated to improving patient care by advancing the science and practice of nutrition support therapy. Information for patients and caregivers can be found at: http://www.nutritioncare.org/
Hank Luniewski
Charlottesville, VA

Recurrent Diseases

Head and Neck Cancers

Head and neck cancer includes cancers of the mouth, nose, sinuses, salivary glands, throat and lymph nodes in the neck. These are the most likely areas for spread or recurrence of Larynx Cancer.

WebMD

Cancer Section

http://www.webmd.com/cancer/default.htm

Look for: Recurrent Laryngeal Cancer

MedlinePlus

http://www.nlm.nih.gov/medlineplus/headandneckcancer.html

See: Head and Neck Cancer:

Questions and Answers (National Cancer Institute)

Secondary Primaries

Those of us with Larynx Cancer seem more likely to get second primary cancers of the type that could be caused by the same things that caused our larynx cancer. Lung cancer and Esophageal cancer are two extremely likely ones in addition to other head and neck cancers. We are providing sites where you may find more information:

LUNG CANCER

Possible Benefit From Online Genetic Testing For Lung Cancer 6/30/09

http://www.sciencedaily.com/releases/2009/06/090630132003.htm

National Cancer Institute

http://www.cancer.gov/cancertopics/types/lung

MedlinePlus

http://www.nlm.nih.gov/medlineplus/lungcancer.html

American Lung Association

http://www.lungusa.org/

American Cancer Society  Forum for Lung Cancer Survivors

http://csn.cancer.org/forum/129

CancerCare

http://www.lungcancer.org/

UAB Lung Cancer Working Group

The UAB Lung Cancer Working Group is a multidisciplinary team consisting of thoracic-lung surgeons, radiation oncologists, medical oncologists, pathologists, pharmacologists, biostatisticians and research oncology nurses. One of the main goals of the working group is to develop novel therapeutic strategies for the treatment of lung cancer. Different clinical trials are being conducted by this group, including phase I, II and III trials. This multidisciplinary team will promptly evaluate new patients for therapy.

http://www.uab.edu/medicine/pulmonary/index.php

Lung Cancer Alliance recognizes the need for some patients and their caregivers to discuss issues associated with lung cancer.

https://lungcanceralliance.org/

ESOPHAGEAL CANCER

Fred Hutchinson Cancer Research Center

Excellent section for information on determining esophageal-cancer risk

In the first and longest observational study of its kind, Dr. Thomas Vaughan and colleagues found that aspirin and other nonsteroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen, may significantly reduce the risk of esophageal cancer among people with Barrett’s esophagus. The eight-year study found that current users of NSAIDs faced one-third the risk of developing esophageal adenocarcinoma as compared to patients who never used the drugs.

Please talk with your doctor about this.

( Esophageal cancer is more often squamous cell carcinoma than adenocarcinoma. Our laryngeal cancers have about 90-95% squamous cell and a very small percentage of adeno, also. Standardly, not smoking and drinking, losing weight if you are heavy, and treating for acid reflux are the main tools to fight cancer of this type. Comment from editor, PS)

http://www.fhcrc.org/research/diseases/esophageal_cancer/index.html

Vanderbilt University – a 20 minute introduction to esophageal cancer by a team of doctors and nurses at the Vanderbilt-Ingram Cancer Center. It covers definitions, diagnosis and treatment, the surgical process, pain management, eating, talking, and clinical trials.

http://www.youtube.com/watch?v=ei4cOvFIqPY

MedlinePlus

http://www.nlm.nih.gov/medlineplus/esophagealcancer.html

MedicineNet.com

http://www.medicinenet.com/esophageal_cancer/article.htm

National Cancer Institute

http://www.cancer.gov/cancertopics/types/esophageal

Asbestos cause of cancer

Another source of lung and head and neck cancer is exposure to asbestos. Information on this can be found at the following site: Asbestos.net

Another resource for information relateing to Asbestos conserns can be found at:

https://www.regionalfoundationrepair.com/foundation-repair/everything-you-need-to-know-about-asbestos-in-your-home/

Smelling and Polite Yawn Technique

Smelling and Blowing Your Nose with the Polite Yawn Technique

As a laryngectomy we have no airflow thought our nose to smelling and blowing your nose can be a challenge. There is a technique that can be learned to help with that capability called a Polite Yawn Technique. I involves using your mouth cavity to capture air and force it out you nose by closing our jaw with your mouth closed. The air has to go somewhere so it goes out the nose. The reverse action can be done to draw air into the nose to enable some smell.

Here is a YouTube video that helps demonstrate the Polite Yawn Technique;
Helpful hints for laryngectomees regarding enhancing the ability to smell and fix a runny nose. – YouTube

This technique is explained at the following link from the Dutch Cancer Society:
http://www.hoofdhalskanker.info/wpavl/wp-content/uploads/Olfaction-regained_VO.pdf

There is also a video on YouTube that show the effectiveness of the technique as indicated by the use of a manometer (not necessary to learn the technique).

Another YouTube video shows how the technique looks when being done:

 For those that can not perform the Polite Yawn technique here is another method that uses a baby nipple and tubing to create a device to help:

There are a lot of ways to learn how to sniff and smell again. All of them
are related to being able to suck in liquid through a straw. If you can do
that, try blowing bubbles with the straw. Doing these means you can use
your mouth as a bellows – to pull in air or push out air. When you use a
straw, you also have your soft palate closed. That’s the connection between your nasal passages and your mouth. It can take some practice to learn to open and close it on purpose, but it can start with a clicking, snorting sound coming from the top back of your mouth. When you do the straw action with your lips closed, air has to go through that opening in your soft palate – which means air flow in and out through your nose.

In my experience larys tend to lock down our soft palates. (I don’t know
why.) Once you can open it up food will taste better, you can blow your
nose, and taking a sniff of the air is easy.
Be well,
Julain

I am a biologist and taught biology using the human organism for almost all of my examples. I reasoned that if those tissues with the sensory cells were intact, there was NO reason that the sense of smell or taste should be inhibited directly BY THE ACTION OF THE SURGERY. The drinking straw thing–that’s is a problem for certain people that have a certain level of radical surgery and a particular form of reconstruction that prevents specific muscular actions from taking place. I was/am not one of those few, so I use a straw quite frequently. In fact, drinking with a straw is easier, if not “cleaner” for me than more normal tipping of the glass, because of how the muscles below my tongue and along the underside of my jaw & thorax now work (I sometimes dribble).

I was able to move air through my nose by the second day after surgery while still in the hospital. I was not able to experiment with taste and flavors for a while because I was not allowed to swallow (at all) for a little over 2 weeks. In the hospital, I quickly noticed the alcohol swabs used on me, the disinfectant in the hand-cleaner my nurses and visitors used on their way in & out of the room, the scent one of my nurses wore and I noticed when I was awakened one of those annoying frequent times in the night.

When I realized I must be doing something to get the air to pass by the sensory area of my nose, I was delighted! I did not have t work at it much, but was pretty quickly able to push and pull air through my head with what I later learned had the name of “polite yawning.” When you see a frog do it, it’s called ‘buccal respiration’ (‘buccal” meaning ‘cheeks’). Frogs pull in air to their cheeks.move it around just a tad, then pump it back out. They are blessed with the ability to diffuse oxygen directly through their skin, including the lining of their mouth, so they can sit quietly and breather with no body/lung effort whatsoever. I mimicked a frog in those early days of experimentation, but now can move mouth air up into the back of the throat and into my nasal area without much (if any) thought and almost no externally observable effort.

When I am at the stove, this act of moving air to smell is more or less automatic–I rarely “think” about doing it anymore and only concentrate on doing it when I am seriously evaluating something I am cooking, altering spicing, or experimenting with. I sometimes stop and consciously make the effort to pay attention when I have a particularly fine cup of coffee from some new coffee I have recently roasted. In this way I am able to better pick up the delicate florals that might be otherwise missed by simply swilling the cup down. (grin)

Regarding taste; I have found that while certain flavors absolutely require the “air connection” that involves the sensory area of the nose, there are far more flavors of which I find myself much more sensitive BECAUSE I am essentially relying only on the tongue to “taste” the flavor.

I can now better pick out specific chemicals from certain items because the nose is not dominating the sensory reactions. Mints, for instance are easier to tell apart one from another. The methyl salicylate that provides the primary taste we associate with wintergreen, as another example, stands out like a loud bullhorn against the background “noise” of the flavors in a candy, beverage, or desert drink. I can much better pick out the
sensation(s) of umami and know better how much I need to moderate that flavor aspect one way or the other. (This, in fact, was a pleasant surprise with respect to my cooking and I have added a number of umami additives to my cooking shelf!)

Many sweet treats, especially hard candies and baked good with fillings or that are covered in reduced sweet sauces, have become too sweet–and often too “chemically” tasting–for me these days, especially when the various sugars are combined with aromatic oils. Orange oil, as an example, is SO intense since the laryngetomy!

The Bottom line for me is that while my sense of taste & smell have been altered to one degree or another and has, indeed, required some adjustments, it has been in no way a loss in my life.

Be encouraged! You will adapt and perhaps discover new abilities that cause your cooking to evolve and improve!
We are all puling for you!
Kirk

Following the recent discussion on the sense of smell after laryngectomy, and the possibilities for its rehabilitation, I would like to once more draw attention to the website of the Netherlands Cancer Institute, where you can find very useful information and teaching material both for patients and SLPs about the nasal airflow inducing maneuver/polite yawning method, also mentioned by some of you. This is a well-researched and documented rehabilitation method, which enables the majority of laryngectomy patients to remain able to smell: if your sense of smell was normal before the laryngectomy, you still should be able to smell after the surgery. The instruction material contains many videos that make the recovery easier to understand and accomplish. With the help of your SLP this will be even easier. Also the American Cancer Society mentions this rehabilitation method on their website since earlier this year.

https://www.cancer.org/cancer/laryngeal-and-hypopharyngeal-cancer/after-treatment/follow-up.html

All this Netherlands Cancer Institute copyrighted documentation is freely available for teaching purposes and for sharing with your health care provider(s) and your fellow patients.
With kind regards, Frans Hilgers.

Prof. Frans JM Hilgers, MD PhD, Head and Neck Surgeon Chairman-emeritus Department of Head and Neck Oncology and Surgery The Netherlands Cancer Institute – Antoni van Leeuwenhoek Hospital Professor-emeritus Institute of Phonetic Sciences (ACLC), University of Amsterdam Plesmanlaan 121, 1066CX Amsterdam, The Netherlands.
www.hoofdhalskanker.info
www.gpracademy.com
www.franshilgers.nl

Links

– Olfaction regained patient manual: https://www.avl.nl/flipbooks/Polite-yawning_manual%20for%20patients.app/Polite-yawning_manual%20for%20patients.app/Contents/Resources/index.html#p=1
– Olfaction regained SLP manual: https://www.avl.nl/flipbooks/Polite-yawning_manual%20for%20SLPs.app/Polite-yawning_manual%20for%20SLPs.app/Contents/Resources/index.html
– Olfaction regained refrence textbook (for those who want to go into more detail concerning the scientific backgrounds): https://www.avl.nl/flipbooks/Olfaction%20regained_FB-ST/index.html
Access to these and other documentations can also be achieved through the HN department website: https://www.hoofdhalskanker.info/olfaction-rehabilitation-after-total-laryngectomy/

*Text at the ACS website:
Restoring your sense of smell : If you have lost your sense of smell, or are smelling odors that aren’t really there, olfactory rehabilitation might be another part of your recovery. Problems with smell (called olfactory disorders) can affect your appetite, sense of taste, food enjoyment, and how much you eat. Nearly all people who have had a laryngectomy will find they cannot smell things the way they did before. This is because air no longer travels through your nose. With olfactory rehabilitation, you can be taught techniques that cause nasal airflow and may help you recover your sense of smell. Examples are the nasal airflow-inducing maneuver (NAIM) and polite yawning. Olfactory rehabilitation (rehab) is available at some large medical centers. Talk to your health care team to learn more.

Dysosmia and Dysgeusia

Loss or problem with smell and taste can be a common issue. They can effect the quality of life, our nutrition, and even result in depression. The following is a link that talks about this issue from Practicl Neurology:
https://practicalneurology.com/articles/2011-feb/dysosmia-and-dysgeusia-a-patients-nightmare-and-an-opportunity-for-learning

Another result can be olfactory hallucinations, where we smell things that are not really present. The following article from Brain and Life talks about this: https://www.brainandlife.org/articles/i-have-olfactory-hallucinations-in-which-i-smell-smoke-what/

Runny Nose

Even though you are not breathing through your nose directly (and some of Larys don’t even possess easy indirect nasal contact) the body’s cholinergic and histaminic responses still work just fine.

Contact with various particles, allergens, microorganisms, viruses, and so on, will send the nasal passages and upper brachial passages into their regular responses of making more mucus to “flush out” particles you have breathed in or in response to attack by adenoviruses, rhinoviruses, or even influenza viruses.

It does not require that these particles or viruses touch the nasal passages directly to get the response mechanism in the nasal passages going. The trigger can be quite remote from the nasal area and still cause/produce a runny nose and/or excess brachial mucus.

In fact, playing around inside your stoma and messing with your TEP (brushing, swabbing, or turning the TEP on its axis in the puncture site) can trigger a cholinergic/histaminic response in your nasal passages. This physical mechanism is known as a vagally-mediated reflex. You mechanically disturb (touch) a location and the body responds chemically and physically by dumping histamine, which further makes cells dump more fluids, increasing thin mucus secretions. It is a cascade effect and can last minutes to hours depending upon the individual and the location & level of disturbance.

I typically experience this a few times a week when I have to get a little more aggressive at cleaning out my TEP with my little brush or spend just a little too long trying to get mucus removed from the tracheal side of the TEP and the visible part of my upper trachea. I know it as soon as it happens (actually, it takes about 30 sec. to a minute for the full effect to
manifest):

I push too much on the TEP for a little too long and I get a “funny”
feeling in the area above my neopharynx (this is above and behind my
trachea. Then my nose begins to run just a little, and before long, I have a full-on runny nose that typically lasts for 15-30 minutes. Some days I may have a runny nose from this that lasts over an hour.

When I am going out for an appointment or out for the evening, I am careful to be very gentle in cleaning my TEP, so I do not have to deal with a runny nose while I am away from home or out with other people.

My ENT/Surgeon acknowledged that this is a well-known effect with many Larys and gave me a prescription for a nasal spray, Ipratropium bromide (0.03%), to prevent or alleviate the effect. The problem with this route is that you need to pre-treat 15-minutes to an hour before stimulation (cleaning the TEP or swabbing the tracheal area) to prevent the effect. It takes 15 minutes or more for the stuff to work after the effect starts and since (in my case) the effects only last 15-30 minutes, it is a waste of time (and expensive medicine) to apply the spray after the runny nose begins. I do not know if it is going to happen until it happens, so I do not like to pre-treat. Nasal steroids, like Flonase and the like, can also largely prevent the histaminic effects (they work differently than Ipratropium), but you have to use them for several days in a row before they can be effective against the histaminic responses.

If you have seasonal allergies or allergies to household dust and such (which I do), regular application of mild nasal steroids like Flonase/fluticasone during your worst seasons can really help reduce the runny noses. Now that Flonase/fluticasone is an Over-The-Counter product, you do not need a prescription to give it a try. A full month’s supply is about $15 where I live (I have seen it as low as $10 and as high as $21 in local pharmacies and Big-Box stores, here in Central Indiana). I use it for about a month when the trees produce gobs of pollen in the spring and again for about a month in late summer when the ragweed pollen around here is so thick you can see it in the air (you know it’s bad when it leaves a yellow coating on my car’s windshield). The rest of the year, I just try to take it easy on how rough I am in cleaning out my TEP and have only occasional bouts of runny nose.

Best to you as you chase down that running nose!
Kirk Janowiak

Posted 2/2019

Stroke and Vascular Problems

A test called the carotid ultrasound can detect the buildup of cholesterol-filled plaque in the carotid arteries in the neck. These arteries deliver blood to the brain. The test, which uses sound waves, is quick, safe, and without any immediate potential for harm. It makes perfect sense for someone experiencing light headedness, memory loss, or the warning signs of a stroke or mini-stroke.

Having a carotid ultrasound test also makes sense for anyone in whom a doctor hears an abnormal sound called a bruit (BREW-ee) as he or she listens to the carotid arteries through a stethoscope. The scan is also a reasonable idea when a person has known risk factors for stroke, such as a previous “mini-stroke,” high blood pressure, high cholesterol, or diabetes. But a carotid ultrasound isn’t a good idea for otherwise healthy people at average risk for stroke.

Excerpt from the Harvard Medical School’s Healthbeat

To read about more tests:
www.mayoclinic.com/health/carotid-artery-disease/DS01030/DSECTION=tests-and-diagnosis

I have found & I so teach my students that the US Preventive Taskforce is gospel & should be listened to at all costs!!

Bertrand M. Bell MD
Professor of Medicine
Albert Einstein College of Medicine

BlOOD PRESSURE INSTABILITY RESULTING FROM RADIATION THERAPY FOR HEAD AND NECK CANCER

Hypertension and hypotension due to baroreceptors damage: Radiation to the head and neck can damage the baroreceptors located in the carotid artery. These baroreceptors help in regulating blood pressure by detecting the pressure of blood flowing through them, and sending messages to the central nervous system to increase or decrease the peripheral vascular resistance and cardiac output. Some individual treated with radiation develop low, labile or paroxysmal hypertension.LOW BLOOD PRESSURE: This can be cause by damage to the peripheral and autonomic nervous system and the carotid baroreceptors. This can lead to baroreceptor failure expressed as orthostatic hypotension (intolerance) which is characterized by dizziness when standing up from a sitting or lying down. This can be managed by standing up slowly, wearing of compression stockings, exercising and by keeping well hydrated. LABILE HYPERTENSION: In this condition the blood pressure fluctuates far more than usual within the day. It can rapidly soar from low (e.g., 120/80 mm Hg) to high (e.g., 170/105 mm Hg). In many instances these fluctuations are asymptomatic but may be associated with headaches. A relationship between blood pressure elevation and stress or emotional distress is usually present.PAROXYSMAL HYPERTENSION: Patients exhibit sudden elevation of blood pressure (which can be greater than 200/110 mm Hg) associated with an abrupt onset of distressful physical symptoms, such as headache, chest pain, dizziness, nausea, palpitations, flushing, and sweating. Episodes can last from 10 minutes to several hours and may occur once every few months to once or twice daily. Between episodes, the blood pressure is normal or may be mildly elevated. Patients generally cannot identify obvious psychological factors that cause the paroxysms. Medical conditions that can also cause such blood pressure swings need to be excluded (e.g., pheochromocytoma).Both of these conditions are serious and should be treated. Management can be difficult and should be done by experienced specialists. If there is stenosis of the carotid artery, correcting it can improve the baroreceptor failure.Dr Samuel Mann from Weill-Cornell Medical Center in New York City is one of the leading experts in treating paroxysmal hypertension. https://weillcornell.org/smann The Vanderbilt Autonomic Dysfunction Center is one of the nation’s leading expert centers in dysautonomia, or autonomic dysfunction. https://www.vumc.org/aut…/vanderbilt-autonomic-dysfunction Itzhak Brook MD

Comments from our members:

SEX HEADACHES ! – WHAT ? — Have any of you other laryngectomee friends had blood pressure spikes caused by sex or stress ? — Long term laryngectomees who had NECK RADIATION are possible candidate for a rare condition that can cause this (I’ll tell you why in a minute). My first sign of a bp (blood pressure) spike issue was 10-3-20, and again on 10-10-20, a sudden severe headache during the last minute of sex. Took bp afterwards and found it was like 210/110. Called ambulance. It climbed on up to 230/120 while in ambulance (prob bc of me worrying about stroke). They gave me nitro twice, zofran once, and I felt “tolerable” by the time we arrived at hospital. Hospital did CT of head, neck, and chest; no stroke, but couldn’t totally rule out brain tumor, but “brain blood flow patterns inconsistent w tumor”. The next day I started monitoring my bp regularly and discovered that my resting bp had climbed to around 155/90, AND that it spikes severely during stress, to 160/100, or when anticipating or during sex, to 180/100 +. Saw several Drs and did many tests, for pheochromocytoma, renal artery blockage. No dx yet. Sex headaches are rare enough that none of my Knoxville, TN docs has ever even heard of them, however the internet has many articles on them. They are real, and probably underreported. So, my cardio doc doubled my bp med, added a Norvasc and Atenolol, and I’m finally having normal resting bp readings with “acceptable” stress spike amounts, like 155/90 ish. Pre sex still like 180/95. I can live like this, but would still like to know what’s “causing” the spike issue. Now that bp is usually normal again, I’m so much calmer, feel much better, more patient, concentrate better. Huge improvement. Some other symptoms I have, that some of you may have: I also have substantial bp drop (to 90/60) when turn my head extreme right or left, which may or may not be related to my bp spikes (?). Also, after 4 years of successfully using my electrolarynx on the left side of my neck, I had to stop, bc it started making me very lightheaded, and got progressively worse over the last year. My best sound happens to be on the carotid artery. Kicking and screaming, I finally started using the “straw”/oral adapter on my EL and can talk OK with it now. Again, this might be related to what’s causing my bp spikes, or a separate issue – ?  OK, here’s the RARE CONDITION that I “might” have that could be causing my bp spikes: “BAROREFLEX FAILURE”. Look it up. It’s a condition that can happen several years after the carotid artery area gets radiation. With this condition, your “batroreceptors” can no longer detect and control the severity your blood pressure increases and decreases properly.

After lots of internet research, I discovered that my history and symptoms seem to fit the description of this condition. I plan to go to Vanderbilt to get checked for it; they have knowledge and experience in diagnosing and treating this ailment. – QUESTIONS: Have any of you been diagnosed with Baroreflex Failure, or anything similar to it ?  Have/do any of you have any of these symptoms ?, and if so, what did you do about it ? – Tnx, David Smith

1. People wanted to know the results of the carotid artery doppler ultrasound that was done. Here are the result passed to me by my PCP:Carotid artery Ultrasound report: Right side – cholesterol accumulation which results in 30-50% blockage. Left – 0-39%. You can see that this is inexact. But, sort of confirms our suspicion about your symptoms. This degree of blockage doesn’t usually require surgery, etc. However, in light of your prior surgeries, I’d like to hear an opinion from a vascular surgeon.

I wrote back to my doctor in response: Thanks for the report. I wonder how they can tell the difference between cholesterol accumulation and radiation or surgical scarring using and ultrasound?

The doctor responded:They probably can’t. And I agree / suspect the latter. We’ll work on an appointment for you.

So, it would seem that we are still an enigma to the medicatl community. My surgeon, whom I work with as a volunteer, commented that the results are pretty good for any senior, laryngectomee or not. All good news is always welcome. 🙂
Hank

2. I was told the Carotid CT scan does a much better job of identifying the nature of the blockage.
Dave

3. In checkup year before last, my doc heard something he wanted to check out. I came back for the carotid doppler. Very easy and simple. Takes a little while because the tech moves slowly and watches the screen. My blockage wasn’t enough to cause problems… Had it done again this year and the doc thought it was doing great… but said, if it reaches a certain percentage of blockage, he would send me to have it cleaned out. Right now it is well under a figure to be concerned about.
Pat

4. I have had this test done twice and it is nothing at all to worry about…like an echo gram to your neck…about 20 minutes or so. They found my right side blocked at 65% and said that was fine for my age and all. As I understand it they don’t want to do anything intrusive unless you’re 85% or more and then they prefer meds first. I had similar symptoms to yours and they have been gone for 8 years since I started taking a baby (91mg) aspirin each morning. I take a coat one that dissolves in the intestines not the stomach. Best of health to you all.
Frank

5. It’s a very simple test that takes about 45 minutes as the tech will check both sides of the neck. I’ve had at least 20 of these test over the last 20 years and my carotids are pretty good but several years ago I had a small blood vessel burst at the stem of the neck and the bleeding down on the spinal cord caused the lost of some motor skills, was hospitalized for 3-4 days and when the bleeding stopped the problem went away and no problem since. The neurologist blamed to radiation for weakening the blood vessel. There are fixes but I don’t have the knowledge to comment on them.
Lou

Stroke and vascular Problems Related to Head and Neck Radiation

BLACKOUTS – FAINTING

A number of our members have complained about blackouts. One would get up, walk across the room and wake up on the floor. Dr. Peters wrote an article about this possibility for HeadLines that I’ll print below, but you can now find a lot of information on the Internet (see below). Perhaps you could talk with your doctor about your blood pressure and this possibility. (NOTE: you must keep yourself well hydrated.)

FROM HEADLINES NEWSLETTER

Doctor, can radiation cause dizzy or fainting spells (vasovagal syncope)?

Let’s start by reviewing some anatomy. Then, I will address the problem some patients have when they turn their heads and get a little dizzy and light headed. On either side of your neck is the carotid arteries which are the main suppliers of blood to the head and more specifically, the brain. This artery comes into the neck from the chest as a single large artery, the common carotid artery, then splits in the upper neck to become the external carotid artery supplying blood to the face and head outside of the skull and the internal carotid artery supplying blood to the brain. Where this artery splits is called the carotid bulb and you can usually feel it as a pulsating mass in the upper neck. The carotid artery and especially the carotid bulb are enervated by some specialized nerve fibers that are sensitive to the chemical content of the blood and also to the pressure of the blood inside of them.

Now, lets say you have had surgery on the neck or radiation to neck. Remember that either of these can cause some degree of scarring around this blood vessel resulting in some degree of “squeeze” on them. The nerves, that I mentioned above, read this as an increase in the pressure INSIDE of them and set in motion automatic measures to lower the blood pressure. These include a lowering of the heart rate and a dilatation of the blood vessels in the rest of the body. The net result of all of this is a relative lowering of the blood pressure to the brain and the sense of dizziness and being light headed. This whole thing can be made even worse if you have some degree of athersclerosis (cholesterol plaque)or if you are taking medicines for high blood pressure. Dehydration also may be a contributing factor.

If you have this problem, unfortunately there is not much that can be done to eliminate it. The most important thing is to simply be aware that the problem exists and not change positions rapidly, i.e. lying to sitting or sitting to standing. Take your time when you get up and don’t immediately start walking. You might want to make sure you are well hydrated and that your blood pressure is under good control and your anti-hypertensive medicine is right for you. If the problem is severe enough that you almost black out or if it occurs very frequently, please check with your doctor and make sure that you are not having transient ischemic attacks (mini strokes) or something wrong with the heart itself causing it to be an inefficient pump.
Glenn E. Peters M.D.
Director, Division of Otolaryngology – Head and Neck Surgery
University of Alabama at Birmingham, Birmingham, Alabama, USA

ON THE INTERNET

http://medicinenet.com/Fainting/article.htm

There are many pages of information about fainting with sections written on these areas:

Introduction to fainting (syncope)
What causes fainting (syncope)?
Heart rhythm changes
Heart structural conditions
Heart valve conditions
Sudden cardiac death
Postural hypotension
Vasovagal syncope
Anemia
Dehydration
Orthostatic hypotension
Vertebrobasilar system
Electrolyte imbalance
Other medications and drugs
Pregnancy
What are the signs and symptoms of fainting (syncope)?
How is fainting (syncope) diagnosed?
What is the treatment for fainting (syncope)?
Can fainting (syncope) be prevented?
Fainting (Syncope) At A Glance
Patient Discussions: Fainting – Describe Your Experience

Dizziness

Vasovagal Syncope, Low Blood Pressure Syncope and Vertigo

These are not the same thing, nor do they have the same causative factors but they all cause types of dizziness.

VASOVAGAL SYNCOPE

http://www.mayoclinic.org/diseases-conditions/vasovagal-syncope/home/ovc-20184773

Vasovagal syncope (vay-zo-VAY-gul SING-cuh-pee) is the most common cause of fainting. Vasovagal syncope occurs when your body overreacts to triggers, such as the sight of blood or extreme emotional distress. The trigger results in vasovagal syncope — a brief loss of consciousness caused by a sudden drop in your heart rate and blood pressure, which reduces blood flow to your brain.

Vasovagal syncope is usually harmless and requires no treatment. However, you can injure yourself during a vasovagal syncope episode. Also, your doctor may recommend tests to rule out more serious causes of fainting, such as heart disorders.

Before a faint due to vasovagal syncope, you may experience some of the following:
• Skin paleness
• Lightheaded
• Tunnel vision — your field of vision is constricted so that you see only what’s in front of you
• Nausea
• Feeling of warmth
• A cold, clammy sweat
Common triggers for vasovagal syncope include:
• Standing for long periods of time
• Heat exposure
• The sight of blood
• Having blood drawn
• Fear of bodily injury
• Straining, such as to have a bowel movement

In most cases of vasovagal syncope, treatment is unnecessary. Your doctor may help you identify your fainting triggers and discuss ways you can avoid them. However, if you experience vasovagal syncope often enough to interfere with your quality of life, your doctor may suggest trying one or more of the following remedies.

LOW BLOOD PRESSURE – FAINTING

Medications
Drugs that might help prevent vasovagal syncope include:
• Blood pressure drugs. Beta blockers such as metoprolol (Lopressor) are designed to treat high blood pressure. They are also the type of drug used most often to prevent vasovagal syncope because they block some of the signals that can lead to fainting.
• Antidepressants. Selective serotonin reuptake inhibitors, such as paroxetine (Paxil), fluoxetine (Prozac) and sertraline (Zoloft), also have been successful in preventing vasovagal syncope.
• Blood vessel constrictors. Drugs to treat low blood pressure or asthma are sometimes helpful in preventing vasovagal syncope.
Therapies
Your doctor may recommend specific techniques to decrease the pooling of blood in your legs. These may include foot exercises, wearing elastic stockings or tensing your leg muscles when standing and increasing salt in your diet if you don’t have high blood pressure. Avoid prolonged standing — especially in hot, crowded places — and drink plenty of fluids.

http://www.mayoclinic.org/diseases-conditions/low-blood-pressure/basics/definition/con-20032298

For some people, low blood pressure can signal an underlying problem, especially when it drops suddenly or is accompanied by signs and symptoms such as:
• Dizziness or lightheaded
• Fainting (syncope)
• Lack of concentration
• Blurred vision
• Nausea
• Cold, clammy, pale skin
• Rapid, shallow breathing
• Fatigue
• Depression
• Thirst
When to see a doctor
In many instances, low blood pressure isn’t serious. If you have consistently low readings but feel fine, your doctor is likely to monitor you during routine exams. Even occasional dizziness or lightheaded may be a relatively minor problem — the result of mild dehydration from too much time in the sun or a hot tub, for example. In these situations, it’s not a matter so much of how far, but of how quickly, your blood pressure drops.

Depending on the reason for your low blood pressure, you may be able to take certain steps to help reduce or even prevent symptoms. Some suggestions include:

• Drink more water, less alcohol. Alcohol is dehydrating and can lower blood pressure, even if you drink in moderation.
• Follow a healthy diet.
• Go slowly when changing body positions. You may be able to reduce the dizziness and lightheaded that occur with low blood pressure on standing by taking it easy when you move from a prone to a standing position. Before getting out of bed in the morning, breathe deeply for a few minutes and then slowly sit up before standing. Sleeping with the head of your bed slightly elevated also can help fight the effects of gravity. If you begin to get symptoms while standing, cross your thighs in a scissors fashion and squeeze, or put one foot on a ledge or chair and lean as far forward as possible. These maneuvers encourage blood to flow from your legs to your heart.
• Eat small, low-carb meals.

I’ll add another that I read about… Raise the head of your bed and sleep on a slant if you have low blood pressure in the mornings. .. Many of us do this anyway for acid reflux avoidance!!

DIZZINESS MORE INFORMATION

http://www.mayoclinic.com/health/dizziness/MY00118

Dizziness can range from a fleeting, momentary sensation to a severe loss of balance disorder that makes normal functioning impossible. Nearly half of all adults will have an episode of dizziness serious enough to send them to the doctor.

Dizziness generally refers to three specific sensations:

• Faintness. One type of dizziness is described as feeling lightheaded, as if you might pass out.
• Loss of balance. Another type of dizziness is characterized by feeling unsteady on your feet, as if you might fall.
• Vertigo. With vertigo, you feel as if the world is spinning around you or that you yourself are spinning.
Describing your dizziness as precisely as possible will make it easier for your doctor to diagnose the cause and treat it.

Causes
The causes of dizziness are as varied as its symptoms. Dizziness can result from something as simple as motion sickness — the queasy feeling that you get on hairpin roads and roller coasters. Or it can be caused by complicated problems with the balance mechanism in your inner ear.

Inner ear problems
Many cases of dizziness are caused by problems that affect the balance mechanism in your inner ear. Examples include:
• Benign paroxysmal positional vertigo (BPPV)
• Ear infection (middle ear)
• Meniere’s disease
• Motion sickness: First aid
Reduced blood flow
Dizziness can be caused if your brain doesn’t receive enough blood. This can occur for a variety of reasons, including:
• Arteriosclerosis / atherosclerosis
• Dehydration
• Heart arrhythmias
• Orthostatic hypotension (postural hypotension)
• Stroke
• Transient ischemic attack (TIA)

There are more listed but not as common.

BENIGN PAROXYSMAL POSITIONAL VERTIGO (BPPV)

Benign paroxysmal positional vertigo (BPPV) is one of the most common causes of vertigo — the sudden sensation that you’re spinning or that the inside of your head is spinning.

Benign paroxysmal positional vertigo is characterized by brief episodes of mild to intense dizziness. Symptoms of benign paroxysmal positional vertigo are triggered by specific changes in the position of your head, such as tipping your head up or down, and by lying down, turning over or sitting up in bed. You may also feel out of balance when standing or walking.

Although benign paroxysmal positional vertigo can be a bothersome problem, it’s rarely serious except when it increases the chance of falls. You can receive effective treatment for benign paroxysmal positional vertigo during a doctor’s office visit.

The signs and symptoms of benign paroxysmal positional vertigo (BPPV) may include:
Dizziness
A sense that you or your surroundings are spinning or moving (vertigo)
Hotheadedness
Unsteadiness
A loss of balance
Blurred vision associated with the sensation of vertigo
Nausea
Vomiting

Swallowing

Introduction to Swallowing Difficulties

Next to voicing, swallowing is probably the function most affected by laryngectomy surgery. While many patients have worked through them and are swallowing “normally” within a short period of time, most all Laryngectomees will have to deal with some type of swallowing challenge at one time or another. In this section, we provide information on what type of challenges you may encounter and why, as well as helpful information from around the web and from our own family of “larys” who have “been there; done that!”

EATING AFTER STOMACH PULL-UP

After having a stomach pull-up, I was having difficulty eating because my stomach would only hold 4 oz. at a time, then I would have to wait an hour. This meant to gain or maintain weight, I had to eat or drink almost every hour and would eat one hour, drink the next. I was told that gravity would cause the stomach to drop down a bit and expand and now, 5 weeks after surgery, I can finally consume over twice as much and not feel as full. This also allows me to drink something with my meals, which I couldn’t before. Roger Scharmen

Practical tips for swallowing problems

ALOE VERA FOR SWALLOWING

Buy some drinkable aloe vera and sip an ounce twice daily. I had problems with swallowing but they have improved a lot since I started the aloe vera routine. I am using the Lily of the Desert brand but I am sure that others would work as well.
Sydney Gartenberg

TROUBLE SWALLOWING PILLS or FOOD?

1. I have a hint for people who cannot swallow large pills, such as calcium or multi vitamins. I was working hard at crushing them, even with a mortar and pestle. This took hard work to pulverize them until I had a brainstorm, and took out my mini food processor and VOILA, in no time flat I was ready to mix in applesauce. In 15 minutes I can do enough for a week. I put my daily dose into saved sealable small prescription containers. I do one day at a time, so I don’t miscalculate the accurate daily dosage. This job is now easy and effortless.
Carole Rabin

2. Capsules can be opened and poured into a hollow in a spoonful of apple sauce or pudding.

3. My capsules for Prilosec (or the capsule generic) are full of little granules.  I use a teaspoon, snip part of the way through the middle of the capsule with sharp pointed scissors, then break it open and let the granules fall into the teaspoon. I usually use the teaspoon to pour the granules on the back of my tongue and take a swallow or two of water…and they are gone.
Pat Sanders

4. This is just a helpful hint if you get a pill stuck. We found that Yogurt (plain or without chunky fruit) will help dislodge the pill. Hope this will help someone!
Kimberly Iagmin

5. The adage is a spoonful of sugar makes the medicine go down? Well for me, HONEY helps slide the med pills downnnnnn… and liquid vitamins are available from catalogs…
Jim Maloney, Marshalls Creek, Pennsylvania

6. When I got something stuck, I called my doctor’s office. His physician’s assistant suggested mashing a banana and drinking water. Well, I asked her to stay on the phone when I tried it. It works better than anything else I’ve ever tried. Using the mashed banana works better than applesauce because of it’s texture. It slides down and then drinking the water helps push down the stuck food. Apparently, this is used for people that have diseases that effect a persons swallowing.
Rita in NJ

7. Every now and then the members talk about swallowing pills. I spray my mouth area with Biotene mouth spray just before taking my pills.  It seems to lubricate my mouth and throat for them to slide right down.
Kay Allison

TIPS FOR EASIER SWALLOWING

1. For mild swallowing problems: Since you most likely do not have as much saliva as you did, try sipping a little water after chewing your food. Then chew enough to mix the water and food before swallowing. You might have to do this several times to get a thin consistency to swallow.
Zilpha Basone, SLP

2. If you like wine, try adding a jigger of wine to an 8 oz glass of water to have with your dinner. Tasty!
Zilpha Basone, SLP

GET A FOOD “CHOPPER” TO HELP WITH SWALLOWING

There’s a handy food processor for folks who have swallowing problems. It’s made by Toastmaster and is called a “Chopster”. It usually costs about $10.00 (yep, 10 bucks). Keep a eye out for it in stores like Target or K-Mart. It does a good job of fine chopping about 1/2 cup of food like cooked meat, raw vegetables, nuts, or chili. Add some liquid like gravy or sauce before chopping to help ease the swallowing of the chopped food.
Clayton R Schwalen

EATING AND FOOD IDEAS

Refer to the nutirion section for recipies and other information on eating. This section has dietary hints, recipes, hints for those who eat slowly, and more comments from members on ways they deal with their eating problems.

Treatments

EXPLANATION OF DILATION PROCEDURE

A plain explanation with graphics

http://gicare.com/endoscopy/procedures/esophageal-dilatation/

Another optional treatment is VitalStim Therapy.

VitalStim Therapy ® is a safe and effective treatment for patients suffering with difficulty swallowing or dysphagia.    It was developed in the USA in response to the 15 million populations living with dysphagia .  FDA (Federal Drug Association) has approved this therapy in December 2001.
VitalStim therapy is a specialized form of neuromuscular electrical stimulation (NMES) designed to treat swallowing disorders through muscle re-education. VitalStim therapy is administered by a small, carefully calibrated current delivered to the motor nerves of the patient’s throat through specially designed electrodes causing the muscles responsible for swallowing to contract. At the same time, a dysphagia specialist guides the patient through active swallowing therapy to re-educate normal swallow function.
Most treatment sessions are within 60 minutes in duration.  VitalStim therapy has helped thousands of patients with dysphagia, including patients resigned to live on feeding tubes. Therapy sessions are repeated between three and five times a week until swallowing patterns have been restored to a nearly normal level.  Sufferers frequently see dramatic improvements in 6 to 20 daily sessions, sometimes in as little as 3 days.

The following description is from the VitalStim site that is also listed below:
http://www.vitalstim.co.uk/

Members experiences

ESOPHAGEAL DILATION FOR SWALLOWING PROBLEMS

Dilation of the esophagus is usually a surgical procedure done in the hospital under anesthesia but is occasionally done in a Dr.’s office with or w/o anesthesia depending upon the Dr., the patient, and the problem. Once the esophagus is dilated to a width that both the Dr. and the patient are satisfied with–not an easy procedure– then the width can be maintained at home by self-dilation. Those of us that do self dilation at home are really doing maintenance. The reason for the frequency is to maintain the esophagus at the same width the Dr. achieved in the Hospital. Otherwise whatever is causing the stricture–in my case–scar tissue– will close the esophagus to at least the point that it was before the Dr. did the dilation.

For years I had a Dr. who would do the procedure in his office w/o anesthesia. That worked for quite a while if followed by self-dilation, but finally failed due to greater and more intense growth of scar tissue. He then found another Dr. for me who could do the job using different dilators, this following a visit I made to the Swallowing Clinic in Tampa where they were very helpful. I have been extremely fortunate for these Drs., who are responsible for the comfort I enjoy today, are few and far between, and tremendous and incalculable damage can be done by an unskilled practitioner.

All of us are different, and the reasons for the dilation’s are as various as the treatments offered. So, too, are the successes, be they temporary or permanent.
Don Devendorf

SELF DILATION

When I started getting dilated by the doctor at his office, it was done at least once a month and he suggested that I do self dilation. He ordered the dilators and I proceeded to do it at home. I even did it when camping.

I have always had a strong will to live and put up with self dilating if it would help my swallowing. I could only get up to a 36 Fr dilator in. But the doctor said my esophagus had been about the diameter of a ball point pen refill. 36 Fr is about the diameter of one of my fingers.

Prior to and during my dilating, I just had a tracheostomy. I got a fistula that wouldn’t close and had to have my esophagus removed, stomach pulled up, and I got the laryngectomy “as a bonus”, all of which ended the need to dilate.

Ok–the right way to do this. I did it first thing in the morning, before I had anything to eat or drink. I didn’t use any of those deadening things. I hated the taste or feel of them. I just wet the dilator under the faucet, stuck it to the back of my throat, and started to guide it down, sometimes pulling it out and just starting over. Keep in mind, while this thing is down your esophagus, you can’t swallow your saliva, so keep tissues handy or a washcloth for your “drooling”. Once you get it down past the level of the constriction in your esophagus, try to leave it there for 10-15 minutes. After timing this, as best you can, then simply pull it out, clean yourself up (from the drooling), and get on with your day. You’re supposed to try swallowing during the dilation, but I just couldn’t do that. The saliva comes out your nose or heads that way.

I still get out into society, am very active in my retirement years. The dilating never interfered with any of my activities, including work. When done by the doctor, my throat was more sore than when I did it myself. I am happy I don’t have to do it anymore.
Vicki Metz

New Treatment

I have been undergoing a new treatment for the scar tissue that develops after radiation. In May 2018, my surgeon called me with a possible treatment for the scar tissue. A rep had approached her about a product called Aminofix, which has been used for scar tissue following anal cancer. The tissue through the digestive track is the same type, but they hadn’t tried Aminofix to the esophagus. At that time I was being dilated every 6 weeks, my doc wanted me to do my due diligence and read about the product on their website:
mimedx.com.

This is a product made from the placenta of mothers who carried full term and had a c-section. The placenta is dried and made into either sheets or crushed and put into a solution to be injected.

I did my research, and called my surgeon to say yes, I wanted to try. We weren’t getting anywhere with dilations and steroids. My first injection was June 5, I was at 9mm, she dilated me to 12mm, where I tore. She injected me into the tear. I had another dilation and injection August, I was 11mm and dilated to 14mm, where I again tore. We did this again in December where I was dilated to 16mm before I tore. We did a fourth injection in April of this year, I was dilated to 20mm and did not tear. We wanted to wait at lest 6 months for the next injection, I was scheduled October 24. But I’m still swallowing well, so we have postponed until December 5. I don’t think she will put this off longer than this, she will want to look to see what it’s doing.

We have tried stents in the esophagus, which are so painful I wouldn’t recommend and steroid injections. Nothing has helped until this treatment.
At this time there aren’t many surgeons using this treatment. Although my doc is having great success with other patients. If you want any other information, please ask.
Belinda Roddy
10/15/2015
Posted 10/2019

Esophageal Diverticulum

I have a diverticulum or pouch in the wall of my esophagus as a result of surgery and reconstruction. A number of us larys have this pouch and it catches and hold food. I have this problem. Those of us that do, have a tendency to produce old food from two or three meals ago from our throat when we lean over and may have an esophageal diverticulum. Now, how do we deal with this pouch?

First, surgical correction is an option but generally not recommended. The benefits do not outweigh the risks. It is something that can be lived with. Opening up the throat and trying to rebuild the esophagus can lead to numerous follow on problems including fistulas, greater strictures and more inflexible scar tissue. It could also end your ability to speak using a TEP.

Second, how do we adjust to having a pouch? We eat soft or very well chewed foods taken in small bites washed down with water. I have oatmeal every morning and love it. After cooking the oatmeal and adding fruit to it, I add milk and stir the whole thing up to a nice consistency. Many of us use food processors on our food to make it easier to get down.

Third, is there a way to clear the pouch of resident foods? I wear a lary tube held in place by a tube holder which is a strap around the neck held in place with velcro. In the lary tube I wear an HME filter. I wear this arrangement 24/7. Every evening, after brushing my teeth, I take some water into my mouth and let it reach as far back and down into my throat as I can. I then lean over the sink and drive my chin down into the lary tube and HME filter. This pushes the tube arrangement into my throat and acts as a flushing action pushing the old food up and out into the sink. It may sound a little indelicate, but it works for me. I repeat the water flush numerous times until nothing more is coming out. I have heard that some people can manually massage their throat and get the same effect. This approach may or may not work depending on the location of your pouch.

We are all different so we must cast about to discover what solution will work best for us.
Hank Luniewski
Charlottesville, VA
Lary since 2010

Articles from professionals

Excerpt from Questions for the Doctor, HeadLines 1999

We have a question about chronic problems with difficulty swallowing despite repeated dilations.

Let me give you my opinion about dilation. Basically, I don’t think it works. Let’s look at the problem. You have a round organ such as the esophagus. Around this circular organ you have scar tissue. The most basic thing that scar tissue does is to CONTRACT. When you have contracture around a circular organ you get narrowing or stricture. Now let’s look at what happens when you dilate something. What you do is forcibly break up the scar causing a new wound. This results in quess what? That’s right, more scar tissue. And what is scar going to do? CONTRACT!!! Therefore, you have set up a vicious cycle of scar, contracture, more scar and more contracture. Hence, no improvement. It is my feeling that to truly improve the situation, you have to bring in new tissue that is not affected by this cycle.
Glenn E. Peters M.D
Director, Division of Otolaryngology – Head and Neck Surgery
University of Alabama at Birmingham, Birmingham, AL

SWALLOWING DIFFICULTY

Some degree of difficulty swallowing (dysphagia) is common after most types of laryngectomy, whether total or partial. In most cases, the swallowing problems are not severe and tend to improve over time. The causes of swallowing difficulty differ depending on whether the laryngectomy has been partial (hemi-laryngectomy, or supraglottic laryngectomy) or total.

Let’s discuss the partial laryngectomy situation first. As you know, the production of sound or voice is not the most basic function of the larynx. The most basic function is to separate the food and the air which are both taken in through the mouth. The larynx acts as a gate or door. It closes by reflex action when a swallow occurs. It opens when air is inhaled, closes when food or liquid is swallowed. It keeps air moving toward the lungs and food moving toward the esophagus. Part of the larynx is removed during surgery and part of the normal nerve supply is interrupted. The reflexes that direct the larynx to open and close are often disrupted. The main problem that develops is aspiration, or food going into the breathing passage (trachea) instead of the swallowing passage (esophagus). Aspiration may be minor and cause nothing more than a little cough with swallowing or may be severe and cause pneumonia. Early after surgery, almost every patient has some degree of aspiration. Typically this situation improves with swallowing therapy and oral intake can be resumed. Unfortunately, there are occasions when the protective reflexes can never be fully regained and oral intake remains unsafe due to the risk of aspiration. This is rare but can require long-term feeding tube dependence.

In contrast, aspiration almost never occurs after a total laryngectomy because the breathing and swallowing passages are surgically separated. To understand the swallowing changes that occur after total laryngectomy, a little anatomy review would be helpful. The back wall of the larynx actually makes up the front wall of the pharynx or upper esophagus. When the larynx is removed, part of the front wall of the pharynx / esophagus is removed also. When the remaining portion of the pharynx is closed with sutures, the circular opening becomes smaller. Imagine a string tied in a circle. Cut out a piece of the string and toss it out. Now tie the remaining two ends back together. The new circle will always be smaller than the original circle. Just how much smaller depends on how much string was removed. Those patients who start with tumors confined to the inside of the larynx usually have plenty of pharynx left to make a very adequate swallowing passage. Some, however, not only have their larynx removed, but also have part of their esophagus or pharynx removed as well. For these patients, the new “circle of string” can be quite tight. The extreme situation occurs when not only the larynx but also the entire pharynx or upper esophagus has to be removed. This is called a laryngo-pharngectomy. In these cases, the swallowing passage has to be completely reconstructed using small intestine, stomach or a ‘tubed’ skin flap.

Total laryngectomy also disrupts the nerve and muscle fibers that normally contract to help food move down the esophagus. Occasionally patients will have spasm of the remaining muscle, which makes the opening into the esophagus very tight. Plenty of tissue is present to allow easy swallowing, but the muscles are in spasm (hyper-contracted) and won’t allow food to pass. This situation can necessitate a surgical procedure called a myotomy (myo = muscle, tome = to cut) which divides the spastic muscle. The other factors that can lead to difficult swallowing are radiation before or after surgery, or a wound infection or fistula occurring after surgery. Both make the tissues of the pharynx and esophagus more stiff and less stretchy when food is trying to pass. Both processes can actually narrow the caliber of the opening into the esophagus as well.

Many of the same factors that effect swallowing so dramatically after laryngectomy can also effect the ability to use a voice prosthesis (Blom-Singer valve) or esophageal speech. We’ll save that topic for next time.
William Carroll M.D., Otolaryngology, Kirklin Clinic, Birmingham, AL

ESOPHAGEAL DILATION

From HeadLines, April 2005

Dr. Lawrence F Johnson is a Professor of Medicine, University of Alabama at Birmingham where his specialty is Gastroenterology & Hepatology and his interests are esophageal and swallowing disorders; gastroenterology. The following is a summary of his presentation on a new dilation technique for strictures causing swallowing difficulties.

Esophageal Dilation in Head & Neck Cancer Patients

To Include Laryngectomy

Patients with head and neck cancers treated with radiation, chemotherapy, or surgery. i.e., laryngectomy with or without jejunal interposition, radial free arm flap, and tracheo-esophageal voice prosthesis (TEP), develop dysphagia from oropharyngeal dysfunction, and pharyno-esophageal strictures. Traditionally, strictures in these patients have been dilated using rigid endoscopy conducted under general anesthesia, which necessitates rapid luminal expansion during dilation because general anesthesia cannot be frequently used, and these strictures sometimes rapidly recur.

My presentation will address a new dilation technique involving EGD scopes, the Savary-Gilliard dilation technique conducted over a vascular guide wire placed at endoscopy in the stomach or duodenum. If the stricture prevented passage of the 5 mm scope, the vascular guide wire was placed under direct vision through the stricture, and then checked by fluoroscopy to be positioned below the diaphragm, and in the stomach. This per oral endoscopic procedure is performed in our GI out patient endoscopy unit, using topical anesthesia, and minimal conscious sedation with Demerol and Versed. Patient comfort and acceptance of the procedure is aided by radiation and/or the prior surgery having diminished oropharyngeal sensation, our use of small endoscopes, a thin flexible guide wire, and rapid dilation technique. This procedure can even be performed in patients whose stricture had been judged radiographically to be 1 mm or less in size, which sometimes necessitates using a biliary dilator (3 mm) because the smallest Savary-Gilliard dilator would not pass (5 mm).

Since many of these patients have chronic fibrotic strictures that do not allow rapid increases in luminal diameter, these patients tolerate being dilated in progressive small increments (1 mm), over weekly intervals eventually achieving a lumen size of 14-16 mm, which will allow swallowing of most consistencies, if thoroughly masticated, and the patient has a safe functional swallow. Since some of these strictures will rapidly recur, the patient will then undergo repeat dilutions again to 14-16 mm, and during the process the patients are taught self-dilation using Maloney dilators, which can sustain their lumen size in the above range when done daily.

As many of these patients have oropharyngeal dysphagia from radiation and surgical defects, once a lumen size of 5-10 mm is achieved, swallowing therapy is immediately reinstituted, if not previously done. Prior to dilating a tight stricture, intensive swallow rehabilitation is compromised because of a “bounce back phenomenon”, caused by the stricture, resulting in barium, fluid, and food seeking the area of least resistance, i.e., the airway. Sometimes with airway penetration, it is difficult to determine poor pharyngeal contraction, impaired laryngeal protection, which results in little barium entering the post cricoid region (i.e., no pump pressure) versus a post cricoid stricture and the “bounce back phenomenon”. A per oral dilation eliminates the latter possibility. Alternatively, dilation of a stricture at the pharyngo-esophageal junction alone does not achieve a functional safe swallow with deficient oropharyngeal swallowing mechanisms. Thus, this interplay between oropharyngeal dysfunction versus a physical obstruction unites speech language pathologists, radiologists, otolaryngologists and gastroenterologists into a common goal of restoring swallowing function in the patient with head and neck cancer.

Content for my presentation will come from cases discussed at out UAB Polydisciplinary Swallowing and Esophageal Conference that I direct. Following my presentation, the attendees should have knowledge of the use of outpatient per oral endoscopic dilation in the treatment of head and neck cancer patients.
Lawrence F. Johnson, M.D.
Professor of Medicine
University of Alabama at Birmingham
Birmingham, AL

Addition reading

Refer to the Information Provided by Kim Almand M.S., CCC-SLP From
April 2019 Whispers On the Web Newsletter found in the past Newsletters Section.

Biofilm and Yeast

WHAT YOUR PROSTHESIS TELLS YOU

If you wear the kind of prosthesis that you change yourself, you might be missing an opportunity to learn something by examining the one you are removing. After you take it out, do you toss it, drop it in some peroxide or other cleaning solution to re-use later, or do you take a good look at it in strong light? It can tell you a couple of things, especially if you leave your prosthesis inserted for long periods.

Some of us are told by our SLPs or doctors to change the prosthesis often, and right after the TEP surgery, it is wise to do so. If you have your puncture surgery while there is still swelling from the laryngectomy, it is even more wise to have frequent checkups. As the swelling goes down, the puncture often becomes shorter requiring a change in prosthesis length. Many of us go through reductions in size from something like 3.0 to 2.6 to 2.2 to 2.0 over a period of time. You might need the 3.0 for only 2 weeks, whereas, the change from 2.2 to 2.0 might take a year. The longer prosthesis will piston (move back and forth) in the shorter puncture causing leaks around the prosthesis and perhaps enlarging the diameter of the puncture, creating another problem. At first, a close watch is kept on the size and type (another subject altogether), to see if you need a change. Leaks and speech problems are indications that a change in length may be needed.

You may, after following whatever weekly or monthly change schedule that your therapist recommends, be able to wear your prosthesis for longer periods of time. However, if you have a yeast problem, you will have to change it more frequently as well as treat for the yeast. Leaks through the prosthesis are sometimes an indication that it is time to change. However, many people get nervous about a leak and will change it rather than take the time to clean it in place and be sure it is positioned correctly. We have discussed many times using the small intradental brush to clean the inside of the prosthesis and then flushing with one of several different tools. For those who can easily reach the prosthesis, you might use your finger or a long swab to be sure the prosthesis isn’t tipped because of accidentally tugging on the strap, or perhaps putting a stoma vent in and moving the prosthesis to a different angle, again, accidentally. Sometimes, after doing all you can, just sleeping on it will tend to correct a leak overnight and you can postpone changing to another prosthesis for a while longer.

When it is time to put in a new one, remove the one you are using, lay it aside and proceed with your regular routine of inserting another prosthesis. Then, rinse the old one under the tap and look carefully at it, preferably in the sunlight. If you see little areas that look like yellow powder that has hardened, that is yeast. Check around the edges of the flange that holds the prosthesis in the esophagus and see if they are smooth. Sometimes the edge will feel rough and if you scrape away the roughness, the edge is no longer perfectly round. This is part of what yeast does. If you find any of this, wash the prosthesis with soap and water, drop it in a plastic bag, and take it with you the next time you see your SLP. If your appointment is a long time off, call to ask if you need medication for the yeast.

If you have a hardened scale around the outside of the shaft, you have probably left it in too long and need to change more frequently. If you have worn it a long time, there will likely be some stains at the esophageal end, but stains are not what you are looking for. The yeast and scale are the problems. So, next time you change it, take a good look and see what your prosthesis tells you.

Pat W Sanders

DO YOU HAVE A YEAST PROBLEM? A HOME TEST.

There is a lot of talk about yeast and some of you might like to take this simple free at home test that you can do over anytime you are wondering how your yeast is doing…if you are wondering, it is probably thriving!
Might you have a problem with Candida Yeast?

You can try this simple test to find out.

1. First thing in the morning, before you put ANYTHING in your mouth, fill a clear glass with room temperature Bottled Water.

2. Work up a bit of saliva, then spit it into the glass of water.

3. Check the water every 15 minutes or so for up to one hour. If you have a potential problem, you will see strings (like legs) traveling down into the water from the saliva floating on the top, or “cloudy” saliva will sink to the bottom of the glass, or cloudy specks will seem to be suspended in the water. If there are no strings and the saliva is still floating after at least one hour, you probably have Candida under control, and have nothing to worry about. Congratulations!!

What can you do if the test shows positive?

Talk this over with your health care provider, as soon as possible.
Be aware that a Candida Yeast problem can be pretty difficult to deal with, especially after it has had enough time to get established and be causing you problems. It may not be easy, and it may take a while to impact the situation, be patient, and work on it everyday. Your good health is at stake.

SEE YOUR DOCTOR FOR OFFICIAL TESTS AND TREATMENT

FROM THE MAYO CLINIC – ORAL YEAST INFECTIONS
http://www.mayoclinic.com/

CAUSES & RISK FACTORS

Oral thrush and other candida infections can occur when your immune system is weakened by disease or drugs such as prednisone, or when antibiotics disturb the natural balance of microorganisms in your body.

Normally, your immune system works to repel harmful invading organisms, such as viruses, bacteria and fungi, while maintaining a balance between “good” and “bad” microbes that normally inhabit your body. But sometimes these protective mechanisms fail, which can allow an oral thrush infection to take hold.

Cancer is one of the illnesses that may make you more susceptible to oral thrush infection: your immune system is likely to be weakened both from the disease and from treatments such as chemotherapy and radiation, increasing your risk of candida infections such as oral thrush.

Diabetes mellitus. If you don’t know you have diabetes or the disease isn’t well controlled, your saliva may contain large amounts of sugar, which encourages the growth of candida.

If you have HIV, you may have especially severe symptoms in your mouth or esophagus, which can make eating painful and difficult. If the infection spreads to the intestines, it becomes difficult to receive adequate nutrition. In addition, thrush is more likely to spread to other parts of the body if you have cancer or other conditions that weaken the immune system. In that case, the areas most likely to be affected include the digestive tract, lungs and liver.

A list showing risk factors of why we with larynx or throat cancers are more susceptible to yeast:

Having a compromised immune system
Wearing dentures
Having other health conditions, such as diabetes or anemia
Taking certain medications, antibiotics, or corticosteroids, oral or inhaled
Undergoing chemotherapy or radiation treatment for cancer
Having conditions that cause dry mouth (xerostomia)
Smoking

From Mayo Clinic staff

What to do about it

Medications

Comment on the use of these drugs for yeast, causing problems for laryngectomees… Reports from our members are: that most patients have been put on a Nystatin “swish for several minutes and swallow” routine for years.

Many of us have discovered that the yeast is normal but the problem is caused by overgrowth of yeast. This is often caused by taking an anti-biotic which killed the good bacteria in the system, leaving us with a chance for the hardy yeast bacteria to take over, sometimes causing symptoms throughout the intestinal tract as well  as overgrowth of yeast in the oral area.  This may be temporary and be treated for a few weeks, removing the problem.  It can be helped by diet changes and the addition of Pro-biotics/acidophilus supplements or eating foods such as yogurt daily.

However, many of us, especially those with a TEP have a prosthesis that extends into the esophagus area that creates an island for yeast to use as a home. Oral hygiene is extremely important and even forming habits like rinsing the mouth after eating can help to prevent the growth of excess yeast.

To educate yourself about the medications you may be looking at, I copied some information.

I have been on fluconazole for about 5 years, am still learning that carelessness about taking the pill, will see another bout of yeast on the prosthesis.
Pat Sanders lary 1995
written 5-2013

This is only one site for checking meds but it is an excellent one. You can find more about each medication and what forms it has, liquid, powder, tablets to melt in your mouth, pills in various strengths.

http://www.medicinenet.com

What is the treatment for thrush?

Treatment of thrush depends on the cause and severity of the infection. If the thrush is caused by something that is reversible, such as taking antibiotics, smoking, ill-fitting dentures, or poorly controlled diabetes, these factors must be corrected as part of the treatment.

If an adult patient is diagnosed with a mild case of thrush, the doctor may prescribe an antifungal mouthwash (nystatin) or lozenges (clotrimazole [Mycelex]) for short-term use.

For more severe cases of thrush or if you have other reasons for a weakened immune system, you may need stronger systemic medications, such as fluconazole (Diflucan) or itraconazole (Sporanox).

GENERIC NAME: fluconazole
BRAND NAME: Diflucan
DRUG CLASS AND MECHANISM: Fluconazole is an anti-fungal medication related to clotrimazole (Lotrimin), ketoconazole (Nizoral), itraconazole(Sporanox), and miconazole (Micatin, Monistat). It prevents growth of fungi by preventing production of the membranes that surround fungal cells. The FDA approved fluconazole in January 1990.

GENERIC NAME: clotrimazole
BRAND NAME: Mycelex, Lotrimin-AF, Gyne-Lotrimin
DRUG CLASS AND MECHANISM: Clotrimazole is an anti-fungal medication related to fluconazole (Diflucan), ketoconazole (Nizoral),itraconazole (Sporanox), and miconazole (Micatin, Monistat). It prevents growth of several types of fungi by preventing interfering with the production of the membrane that surrounds fungal cells.

GENERIC NAME: itraconazole
BRAND NAME: Sporanox
DRUG CLASS AND MECHANISM: Itraconazole is an anti-fungal drug in the same class of drugs as fluconazole (Diflucan), ketoconazole (Nizoral), andmiconazole (Micatin, Monistat). It prevents growth of several types of fungi by preventing the fungi from producing the membranes that surround the fungal cells. The FDA approved itraconazole in September 1992.

GENERIC NAME: NYSTATIN SUSPENSION – ORAL (NYE-stat-in)
BRAND NAME(S): Mycostatin, Nilstat, Nystex
USES: This medication is used to treat fungal infections of the mouth. Nystatin is an antifungal that works by stopping the growth of fungus.Nystatin suspension should not be used to treat fungal infections of the blood.

Are there home remedies for thrush?

Home remedies for thrush are aimed at decreasing risk factors for thrush as well as preventing overgrowth of the normally found Candida yeast.

• Brush your teeth with a soft toothbrush.
• Rinse your mouth with a diluted 3% hydrogen peroxide solution.
• Rinse your mouth with warm saltwater.
• Avoid mouthwash as it can alter the normal flora of your mouth.
• Keep your dentures clean and see a dentist if they do not fit correctly.
• Eat unsweetened yogurt if you are taking antibiotics.
• Lactobacillus acidophilus supplements may help maintain a healthy balance of Candida.

Yeast – Research and Reflection

It is not uncommon for us to have some amount of yeast, a fungus, in the digestive tract and it may not ever give us a cause for concern. It is when we have an overgrowth of yeast in comparison to the good bacteria that causes problems. Not a very technical explanation, but these do not “fight” each other. They live together but an overgrowth of yeast means it is taking up more room than it should and you don’t have room for the good bacteria you need.

Why do we, who have had throat cancer, talk about this yeast so much and why do so many TEP users especially, though not exclusively, take medication for it? Let’s have a look at who gets it, why some never notice, and what are some of the steps we can take to ease a yeast problem. Maybe we can help with ideas to keep it under control.

Who has yeast that multiplies too much? Many of us do at one time or another. The list of those who are at risk starts with babies, who sometimes get what is called thrush and have white patches in the mouth. A friend of mine had IMRT radiation treatment for his cancer and one of the worst everyday problems for him was thrush, an overgrowth of oral yeast. This is actually a fungal infection, which is temporary but requires treatment. In my friend’s case, it kept coming back with white patches, difficulty swallowing, and no appetite, until the treatments were over. Adults who wear dentures have some yeast and most likely will never know it. It may never bother them. People with immune system deficiencies or metabolic disorders, such as uncontrolled diabetes, RA, HIV, MS, or Crohn’s disease, are more susceptible to having yeast problems.

We have known for years that taking antibiotics can leave us with a yeast infection. Any immune suppressing drug may do the same. Other cancer treatments, such as chemo, can cause this side or after effect. It takes a change of this type in the body that favors the growth of yeast to make it noticeable. Some people have a burning sensation in the mouth and throat that might be caused by this fungus. Yeast can cause bad breath and bad taste, a raw and burning mouth, thickened saliva and, of course, it can colonize on a prosthesis even before the yeast overgrowth is bad enough to have these more obvious symptoms.

We, who wear prostheses, may have a problem with talking or leakage caused by the colonization of these yeast.. We know that the esophageal end of the prosthesis is exposed to whatever we swallow and if the yeast is in our saliva, the prosthesis is like an island in the stream where the yeast can get a foothold and colonize. Have you ever looked carefully at a prosthesis that has been removed? I thought it was important enough to write an article (March 2001 HeadLines) about how we need to examine the old prosthesis and I suggested you rinse the old one under the tap and look at it, preferably in the sunlight or very good lighting. I have even soaked one in peroxide first to remove stains (coffee can leave it looking brown), If you see little areas around the flange that look like yellow powder that has hardened, that is yeast. You may have to use a magnifying glass. Check around the edge of the flange that holds the prosthesis in the esophagus and see if it is smooth. Sometimes the edge will feel rough and if you scrape away the roughness, the edge is no longer perfectly round. This is part of what yeast does. You can’t scrub or brush this away after a deposit is there. This may look ugly but the yeast you see on the flange is not the part that will make that prosthesis leak through the middle. That will be deposits around the area on a “Low Pressure” where the valve (flap) of the prosthesis closes. Using a brush several times a day and running it barely through the valve opening twisting it slightly as you go may clean the yeast off of that area before it hardens and is like a barnacle on a ship’s hull. There are new yeast resistant prostheses that may help your problem with yeast deposits on your prosthesis but it wouldn’t hurt to try to reduce the amount that is knocking at the door of your low pressure one!

What can we do about it. In addition to the antifungal medications, any underlying conditions or causes need to be brought under control. If you are undergoing chemo, or on prolonged antibiotics, it is likely that you will be better after treatment is concluded. However, it is also likely that it will take medication to help get you back to the point where your natural body chemistry and defenses will take care of leveling off the yeast numbers as opposed to the good bacteria who want to live there, too. After taking antibiotics, a short course of treatment for yeast may be all you will need. One of the medications is one pill. That is not one-a-day; it is one pill, … of Diflucan. That might be all it takes for some to get back to normal. For people who have really bad cases, some doctors give it for a longer period, 3 weeks or so, but it can have side effects and many doctors prefer not to use it at all if Nystatin to swish or Mycelex troches will work. However, from a patient’s point of view, if one Diflucan pill after a round of antibiotics will stop a vaginal yeast infection in its tracks, then chances are it will work for oral yeast in a mild case. If it doesn’t, some doctors are prescribing it in other quantities. Once you control the immediate problem, there may be some ways to avoid prolonging these fungus infections or getting another.

Nutrition is always very important. Eat foods with fiber and plenty of vegetables. Stay away from excess sugar and fat. Getting and keeping your body in shape puts you a step ahead. If you are diabetic, control it so the high sugar in the saliva isn’t feeding the yeast. Replace or repair your dentures if they are leaving raw places.

This is how you start. If you are able to improve your health or immune system by taking better care of yourself, then you are not as likely to have an overgrowth of yeast and add to your problems. Now, don’t laugh, but people who exercise tend to have better body functions and are, in general, healthier. Drink your full quota of water. I have heard good comments made about deep breathing. None of these suggestions will hurt you. If they don’t help the yeast situation, they will help you to feel better and let your body naturally fight for you to be in good health.

Is there something you can add to your diet to help achieve the balance you need to keep the yeast from overpopulating? Yes. Acidophilus. Yogurt with live culture is the best known of the foods that will add this. It is a food that will help to add the good bacteria we have been talking about. You can take powdered acidophilus in a capsule but it is a tasteless powder so you can open a capsule, add it to food or liquid, even your daily yogurt and get some more goodies in your gut!

Daily oral cleaning habits can be improved and here are some suggestions that may help. Your mouth may be sensitive so you need a soft toothbrush and you might want a Water Pic to rinse your mouth often, using the most gentle setting. If you are doing regular cleaning, you can use a slightly stronger water pulse but don’t turn it on full blast because that could damage your gums. This is a very good way to clean in between your teeth and to rinse thoroughly before and/or after brushing. I also suggest you consider something like a Sonicare. It is gentle and effective for cleaning.

It might be a good idea to spend a few minutes getting your mouth very clean after you have eaten for the last time at night. That way, you are spending the longest period of the 24 hours each day with no food in your mouth and nothing to encourage the yeast.

Yeast will stay on fabric and then reactivate so it might pay to wash your stoma covers and washcloths in hot water. If yeast forms and grows in the mouth, it is likely that your tooth brush could have yeast on it along with other germs, so how do you make sure your toothbrush is clean. Putting yeast back in your mouth or through your prosthesis with those brushes and cleaning tools doesn’t seem like a very good idea to me so what will kill the yeast on these?

You can kill some germs by soaking in peroxide, mouthwash, or a combination. But, it appears those things don’t kill yeast. What does? Hot water over 122 degrees. Hot water heaters set at 125 would never get it to the faucet at near what you would need.. Rinsing equipment under the hot water faucet is not enough. Setting the temperature very high is a bit dangerous and why heat 40 or 50 gallons when you don’t need much? The dishwasher has extra heat so things you put in there would get the kind of heat you want. However, how about using a Pyrex measuring cup with a handle and putting in it all of the items you want to clean with hot water. Heat some water in the microwave or in a teakettle and pour the very hot (not boiling…that is 212F) water over all the equipment you use to clean your stoma and prosthesis. The small brushes, the tweezers. Let them cool in the water and then put them back to use the next time.

I have wondered about drinking hot drinks like coffee or tea Since the serving temp of coffee or tea is usually 155 to 165, there is a possibility that a few yeast might succumb as you sip the hot drink but if it doesn’t help kill yeast, it at least will make you feel better!

I hope you have learned a little bit about yeast and will understand that sometimes medicine alone isn’t enough. You have a responsibility for self-care. These suggestions are not cures but can let the medicine work better and can possibly stop the next overgrowth before it starts.

Some of the sites researched on Yeast
http://www.netdoctor.co.uk/diseases/facts/oralthrush.htm

Treatment

Topical treatment (active only on the area where applied) is generally the first choice for oral candidiasis and usually works for mild-to-moderate cases. Topical treatments for oral candidiasis include lozenges (also called troches) and mouth rinses.

One or two lozenges are taken for oral symptoms three to five times a day. They should be sucked slowly and not chewed or swallowed whole. Common brands are clotrimazole (Mycelex) and nystatin (Mycostatin).

Mouth rinses are generally less effective than lozenges since they are only in contact with the mouth for a short time. However, they may be the best choice for someone who has a very sore and dry mouth. Rinses are taken in between meals, in a measured amount and are held in the mouth for as long as possible. They should be swilled around in the mouth, then swallowed. They are used at least four times a day and should be continued for a few days after the symptoms have gone (generally two weeks). The most widely used rinse is nystatin (Mycostatin).

Systemic treatment (treatments that work throughout the body) are used for recurring candidiasis or outbreaks that do not clear up with topical treatment. They are also used for esophageal candidiasis.

Three anti-fungal drugs are approved for use in treating oral and esophageal candidiasis. They include ketoconazole (Nizoral), fluconazole (Diflucan) and itraconazole (Sporanox). Generally, doctors will start out with less aggressive therapies (like ketoconazole or itraconazole) and save the more potent fluconazole for later use, if necessary. If candidiasis does not improve with these drugs (i.e. becomes “azole” resistant), another drug, called amphotericin B (Fungizone) is often tried.

The dose of fluconazole is 200mg once a day for oral and esophageal candidiasis. Treatment typically lasts two weeks for oral candidiasis and three weeks for esophageal infection (or two weeks after symptoms clear up, whichever is longer).

Itraconazole is usually taken at a dose of 100mg once a day for oral candidiasis for one-to-two weeks and 200mg once a day for esophageal candidiasis for two to three weeks. It should also be taken with food. Itraconazole oral solution gives higher levels of the drug in the blood than the capsule and has been shown to be more effective. There is a greater potential for interactions between itraconazole and many anti-HIV therapies. For more information on drug interactions, call Project Inform’s Infoline and ask for Drug Interactions.

Ketoconazole (Nizoral) is usually taken at a dose of 200mg once a day for oral candidiasis for one-to-two weeks and 400mg once a day for esophageal candidiasis for two-to-three weeks. It should be taken with food. It may not be well absorbed in people with gut problems or who cannot eat very much. Taking it with an acidic drink (such as cola) may help.

Amphotericin B (Fungizone) is administered by an oral solution (100mg a day four times daily) or through intravenous injection (generally .5mg/kg a day) for two to three weeks. Newer liposomal versions of the drug, such as amphotericin B lipid complex (Abelcet), is administered by intravenous injection at a rate of 5mg/kg a day for two to three weeks.
Pat Sanders – taken from HeadLines newsletter.

Comments from members

NYSTATIN

1.  I just got back from my semi-annual visit with Dr. Blom to have my in-dwelling prosthesis changed. As he gave me my new prescription for Nystatin, he also gave me some new advice, which I think merits passing on. If you have a yeast problem that you treat with Nystatin and have to take antibiotics, do two things: 1. Double the time you swish the Nystatin in your mouth. This means go from a minimum of 5 minutes to a minimum of 10 minutes. Use a clock, minutes take longer to pass than you think. 2. Use the Nystatin swish 3 times a day rather than 2 times a day.

Antibiotics favor the growth of yeast. Therefore, the upping of the Nystatin when taking antibiotics is advised. Also, remember, if you have your own teeth, wait at least 5 minutes then brush your teeth after swishing with nystatin. This will remove the sugar in the nystatin from your teeth.
Terry G Duga

2.  After I swish a few drops of Nystatin once daily for several minutes and then swallow it, I put a few drops on my prosthesis brush and run it into my Provox 2 daily to kill the yeast. If you are using the InHealth indwelling instead of the Provox 2, you can dilute the Nystatin with a bit of water and use the pipette to squirt it into your prosthesis instead.
Sydney Gartenberg

USE ACIDOPHILUS

1. I too had a very bad yeast problem. My prosthesis is Provox NID (patient changeable) and I could not get more than about three weeks out of it. Then I went on over the counter Acidophilus, 2 Billion livies/day, cost less than twenty cents per day and now I average about four months per prosthesis.

It is available at Walmart and other pharmacies. Be sure and get the 2 Billion/tablet or capsule. You will likely see improvement within four to six weeks but it will take several months to attain full benefit.

I spoke with my SLP about this product/treatment as to why this product was not recommended by the medical community. He acknowledged that he was welll aware of the many laryngectomees that had solved their yeast problem with it, but because no approved studies had been conducted and all reports were considered “ancedotal” most medicos would not consider it. Dave in Florida

2.  My last indwelling lasted 10 months and was replace because of size not yeast. Just before I got that one, I started to fight the yeast problem with a good probiotic Acidophilus I get at the health food store. Jarro is the brand and it is refrigerated. I take a couple every morning before I eat. Probiotics help keep your body in good balance in regard to yeast. Yeast usually starts in your month so I brush my teeth first thing when I wake up.
If you have taken antibiotics it is important to replace the good bugs
that are killed so the yeast doesn’t take over.

I just don’t think it is a good idea to swallow a big gulp of Nystatin
anti-fungal med every day for years. I do dip my cleaning brush in it and swish it in my TEP twice a day. The TEP I have in now has been in for over 6 months and no sign of yeast. A small bottle of nystatin used the way I use it will last a couple years and should only cost around $30.00
Janice

ANTIBIOTICS AND YOUR PROSTHESIS

How do antibiotics work for us, as laryngectomees, especially prosthesis users? Antibiotics do not damage the prosthesis but they kill off the good bacteria, some of which keep yeast under control. With yeast being released from the good bacteria guarding it, it can run rampant, and THAT is what causes the prosthesis problems. With lots of yeast in the area of the esophagus, they find the esophageal end of the prosthesis and colonize. Those who do not have a prosthesis, can still have yeast (and even thrush) from the yeast but the prosthesis user has the problem of leakage and replacement.

Can you stop this? You can ease it. Talk to your doctor and there are several medications that help this, such as Nystatin and fluconazole. But as a regular help to avoid the problem, eat yogurt because it replaces good bacteria. When you take the antibiotic, it will still kill the good with the bad, but replacement of the acidophilus helps.

I also believe that brushing and flushing your prosthesis regularly helps and getting your teeth and mouth brushed and rinsed regularly also helps, especially at night. Gargle a bit if you can even with plain water. All of this removes some of the feeding ground for the yeast.

HOW DO ANTIBIOTICS WORK?

Some antibiotics, such as the penicillins, are ‘bactericidal’, meaning that they work by killing bacteria. They do this by interfering with the formation of the cell walls or cell contents of the bacteria. Other antibiotics are ‘bacteriostatic’, meaning that they work by stopping bacteria multiplying.

WHAT ARE ANTIBIOTICS FOR?
Antibiotics are usually used to treat infections caused by bacteria. They do not work against other organisms such as fungi or infectious agents such as viruses. It’s important to bear this in mind if you think you have some sort of infection, because many common illnesses, particularly of the upper respiratory tract such as the common cold and sore throats, are usually caused by viruses. Overuse of antibiotics can lead to bacteria becoming resistant to them so it’s important to only take them when necessary. Consult your doctory any time you feel you need antibiotics.

Some antibiotics can be used to treat a wide range of infections and are known as ‘broad-spectrum’ antibiotics. Others are only effective against a few types of bacteria and are called ‘narrow-spectrum’ antibiotics. Some antibiotics work against aerobic bacteria, that is organisms that need oxygen to live, while others work against anaerobic bacteria, organisms that don’t need oxygen. Sometimes antibiotics are given to prevent an infection occurring, for example, before certain operations. This is known as prophylactic use of antibiotics and is common before orthopaedic and bowel surgery.

SIDE EFFECTS OF ANTIBIOTICS
The most common side effects with antibiotic drugs are diarrhea, feeling sick and being sick. Fungal infections of the mouth, digestive tract and vagina can also occur with antibiotics because they destroy the protective ‘good’ bacteria in the body (which help prevent overgrowth of any one organism), as well as the ‘bad’ ones, responsible for the infection being treated.