July 2012

 


 

 

Name Of Column Author Title Article Type
News Views Pat Sanders IAL IPad Pics News & Events
VoicePoints Annette May, MA,CCC-SLP Choosing the Best Prosthesis Education-Med
Speaking Out Members GERD Opinion
Nuf-Sed Bob Keiningham A Second Opinion Commentary
Travel with Larys C Moore/M Haynes IAL Meeting Photos
Speechless Poet Len A Hynds Mother Nature's Way Prose & Poetry

 

 

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IAL iPad PICS

Had fun wandering around the crowd with my latest model iPad.  Everyone wanted to see what I was doing with that BIG camera.  Will try to get a few in here from some of the activities that I attended or participated in. Our new Webmaster Assistant, Stacy DeLoe, is putting the pics together for us.

Top row: WebWhispers table at IAL; Mike R, Hank L, and Ana Maria
2nd row: Jim Lauder; Gary M & Mike D representing Relay NC
3rd row: Part of the 150 attending; Jensbys, Benadums, Barb N
Bottom row: The Durham Bulls game from the Miller Lite Patio

 

Enjoy,
Pat W Sanders
WebWhispers President
 

 

 

 


 

Choosing the Best Prosthesis: How to Decide


Annette H. May, MA CCC-SLP
Speech Pathology Coordinator, Oncology
MD Anderson Cancer Center Orlando

When I first began working in this field, I remember thinking there were so many products to learn about in the area of laryngectomy rehabilitation. Over the years, it has been a challenge to keep up with all of the options available. Product manufacturers have really risen to the challenge of developing devices to troubleshoot problems and improve quality of life post laryngectomy. In this scenario, I believe that “too many choices” is a good problem to have, but one must understand the potential benefits of each product in order to choose appropriately.

Trying to break down all of the products available to a person post laryngectomy is too much to cover in one article, so I thought we could start with the potential benefits of various voice prostheses on the market for those who have a tracheoesophageal puncture (TEP). With all of the products currently available, how does one decide which would be the best choice? Typically, the best decision is made through good communication between a knowledgeable speech pathologist, head & neck surgeon, and patient. Selection of a voice prosthesis is not only about what fits best in the tract. Although appropriate fit is critical, there are typically multiple products that will provide the appropriate fit for the tract.One must consider many other patient factors to optimize outcomes and patient satisfaction. Therefore, this article is not intended to educate on evaluating the appropriate fit of the voice prosthesis. Instead, it is intended to provide prosthetic choices to troubleshoot issues patients may face even when the prosthesis fit is appropriate. Additionally, a new or different prosthesis is not the answer to all of the challenges listed below. Although beyond the scope of this article, one must not only select a prosthesis that best meets the patient’s needs, but also investigate the etiology of any medical issues that may be interfering with function of the prosthesis as these may be detrimental to the patient if ignored.

Financial/Insurance/Access Issues
Some patients have no insurance or insurance that does not cover medical supplies and/or speech pathology services. Another financial consideration is the cost associated with travel to and from a clinic as many clinicians experienced in TEP management are in metropolitan areas while many patients live in smaller communities. Additionally, some patients do not drive and it is difficult to find transportation to appointments that may be outside of their community.

Non-indwelling (patient changeable) prostheses: These devices are less expensive than indwelling prostheses and reduce the cost associated with a speech pathology or otolaryngology visit in the long-term. However, there are typically more visits in the beginning in order to learn skill and independence with removal/replacement of the prosthesis. Non-indwelling prostheses include;
• Blom-Singer Duckbill Prosthesis
• Blom-Singer Low Pressure Prosthesis
• Provox NID

The cost of the prosthesis alone should not be the driving force in making the most economical decision as a more expensive indwelling (clinician placed) prosthesis may last longer than a non-indwelling and the average cost may end up being equal or in some cases even less. Atos Medical and InHealth Technologies both manufacture multiple types of indwelling prostheses.

Short TE Prosthesis Valve Life (leakage through prosthesis)
Yeast & Such
Yeast (candida), other micro-organisms, and stomach acid (acid reflux) can break down the valve within the prosthesis causing leakage through the center and shortening the device life. Yeast resistant prostheses include:
• Blom-SingerAdvantage
• Blom-Singer Dual Valve
• Provox Activalve

There is a possibility that prostheses that have the valve protected in some fashion (seated further back from the esophageal flange, partially covered with a “hood”, or different valve type all together) may assist in protecting the valve for a longer period:
• Blom-Singer Dual Valve
• Blom-Singer Duckbill
• Blom-Singer Low Pressure
• Provox 2
• Provox NID
• Provox Vega

Pressure When Swallowing
Dysphagia may result in leakage through the prosthesis after only a short period of time or sometimes immediately after it is inserted. When abnormal pressures upon swallowing are present and the pressure on the esophageal side of the prosthesis drops below the pressure on the tracheal side, the valve can open, allowing leakage. This issue can also cause aerophagia due to the valve intermittently opening when the patient is just breathing. It is important to note that the etiology of the dysphagia should be investigated as it could be related to stricture/narrowing, motility issues, or even recurrence. However, some prostheses that may provide extended wear time or comfort in the presence of these issues, if otherwise untreatable, include:
• Blom-Singer Duckbill
• Blom-Singer Increased Resistance (indwelling or non-indwelling)
• Provox 2
• Provox Activalve (strong or extra strong)
• Provox NID
• Provox Vega

Leakage Around Prosthesis
Generally speaking, liquids may leak around the prosthesis if the tissue in the tracheoesophageal party wall is not forming a tight seal around the shaft of the prosthesis. Poor tissue quality may result from trauma, dysphagia, and medical conditions such as radiation changes, thyroid dysfunction, uncontrolled diabetes, poor nutrition, immune suppression, or recurrence of cancer. Some of these issues may cause temporary changes in tissue quality, while others may cause permanent changes with enlargement of the TEP. When the TEP is noticeably enlarged, the solution is NOT to place a larger diameter prosthesis as this will likely only further enlarge the TEP. Often times, these issues require further medical workup and medical interventions in addition to selecting a different prosthesis. Prosthetic options for leakage around the prosthesis include:
• Indwelling prosthesis (larger flanges compared to non-indwelling without increasing diameter)
• Blom-Singer Large Esophageal Flange
• Blom-Singer Large Esophageal & Tracheal Flange
• Blom-Singer Special Length
• Custom prosthesis (in facilities specializing in customization and with MD order)

Strained Voicing
Again, one must first determine the etiology of challenges with TE voicing as choosing a different prosthesis may not be the answer and medical and behavioral issues associated with this problem should always be evaluated first. Otherwise, if a patient has a narrow esophageal lumen in the area of the TEP, then a prosthesis that is flat on the esophageal side may improve voicing:
• Blom-Singer Indwelling

Use of a prosthesis with a larger inner diameter will allow for increased airflow through the prosthesis and may result in less strain. Often, this requires that you upsize the outer diameter as well. If the etiology of the problem has been optimally medically managed and the patient has good tissue quality, then upsizing the diameter of the prosthesis may be appropriate. As the smallest diameter voice prosthesis currently available is 16F, products available to upsize may include:
• Blom-Singer Indwelling (20F)
• Blom-Singer Low Pressure (20F)
• Provox NID (17F or 20F)
• Provox Vega (17F, 20F, 22.5F)
• Provox 2 (22.5F)

Choosing the First Prosthesis to Place
So, what if there are none of the above issues to consider when placing the voice prosthesis, then how do you make the choice? If the surgeon places the prosthesis at the time of the TEP, then an indwelling prosthesis should be placed as the larger, stiffer flanges allow for better retention of the prosthesis while the tract is healing. If the patient is capable of and opts to have a non-indwelling (patient changeable) prosthesis down the line, then as long as the tract is between 16-20F and the tissue quality is good, then the patient can be changed from an indwelling to a non-indwelling at any point after healing.

If a catheter is placed at the time of the TEP, then often a non-indwelling prosthesis is a good choice when it is time to place the first prosthesis. The piston-like motion of the catheter while in place may result in a longer TE tract initially. Once a prosthesis is in place, the length of the tract may decrease, sometimes requiring downsizing of the prosthesis several times over a few month period as the tract stabilizes. When prosthesis changes are required this frequently, then it is both more cost effective and often less traumatic to the TE tract to use a non-indwelling prosthesis, at least until the tract stabilizes.

Whether choosing an indwelling or non-indwelling prosthesis, consideration should be given to placing a smaller diameter prosthesis initially (16F or 17F). If it is discovered after some time and troubleshooting that the patient may benefit from a larger diameter prosthesis, then the tract can be easily dilated for this. However, changing from a larger diameter to a smaller diameter is not as easy and sometimes not possible if tissue quality is poor. There are multiple prosthetic options available to troubleshoot problems between the 16 – 20F diameters. Once you go beyond 20F, prosthetic options are limited. Therefore, it may be better for both tissue health and prosthetic selection if you start small.

Conclusion
While prosthesis selection is one way to address some of the challenges discussed above, one must not forget to evaluate the etiology of the problem if medical in nature. Ideally, the cause of the problem should be eliminatedif possible, not just the symptom. Additionally, I would advise clinicians to troubleshoot with your patient. The sharing of knowledge is a powerful tool. The patient often gives me some of my best ideas. As a clinician, sharing knowledge of a variety of prosthetic options with the patient may empower them to assist you in making the best decision. For the laryngectomees and caregivers out there who may be reading this, I believe it is important to work with someone who not only knows how to place a prosthesis, but understands how to identify problems that may arise and keeps up with available options to troubleshoot these issues. This doesn’t mean that you have to go to a large metropolitan area to find a clinician who has access to all of these options, but working with a clinician who understands when their available options are not effective and is able to network with colleagues who may have additional resources. Finally, some may run into more than one of the issues discussed. Often one type of prosthesis may address multiple issues and other times, a decision may have to be made regarding which issue is the most critical to address.


 

 

 

 

 

 

 

 

GERD

Have you had a problem with

GastroEsophageal Reflux Disease?

 

John Haedtler, New Mexico, USA - 2001

Only one comment! York Peppermint Patties.
Those got me through finding the right GERDS meds! Which was Prilosec OTC.
Just over 10 years now and I still keep them in my house!

 


 

Dave Ross, FL - 2005

 

Ahh yes, GERD, one of my favorite subjects!

In early 2001 my GP surmised (I use the word “surmised” because he performed no tests or examinations to substantiate his “diagnosis”) that I was hoarse because I had GERD and he, without further ado, put me on a daily regimen of Prilosec. Fortunately, just a few short weeks later I had my four year follow up visit with my surgeon who had removed my right upper lobe to rid my lungs of a malignant tumor. When I said “hello Doc” he asked why I was hoarse and I told him what my GP had surmised. He said that because of my history he had to “prove that I did not again have cancer” and immediately scheduled me for a bronchoscope which revealed the tumor on my right vocal cord and the biopsy which showed it to be the Big C. The following radiation seemed to work but in 2005 it was back and resulted in my total laryngectomy.

Having been a two pack a day smoker for fifty years, no one ever suggested that some other factors may have also been a player in the loss of my voice box. But as I have had the time to speculate I have come to realize that my use of tobacco may not have been the only culprit!! Consider:

1) In my thirties I developed a “self-extinguishing” fiber glass resin formula during which time I repeatedly inhaled smoke that I later was advised had been found to be carcinogenic;

2) in my teens and twenties I did a considerable amount of automotive maintenance/repair which frequently involved brake work and can recall thinking nothing of breathing in the asbestos dust therefrom;

3) All of my adult life I often had irregular work hours, frequently would eat a large late night dinner and immediately retire for the night; 4) I often had “heartburn”, or as it was sometimes referred to “indigestion”, but in those days that just seemed to be part of life -- no big deal.

Now I wonder -- was it no big deal?? I am, and have been for the past twelve years, on a regimen of two Prilosec caps daily without which I will suffer nightly GERD.

I am now convinced that GERD may have been as much a factor in my Laryngeal cancer as tobacco. Oh, or was it the asbestos -- or the FRP resin additives?


Oh, I also forgot to mention my regular daily consumption of rum and coke which also added to the GERD factor. I could go on and on, but I love greasy foods, have always eaten more than I should so I’ll just say that in my case GERD is likely a major player!!!

 



Len A.Hynds, The Speechless Poet of AShford, Kent, England - 2004


The first time I realised how different my life would be, with regard to eating and drinking, was immediately after my first valve change. I was so pleased at no longer leaking, that I took a long draught of cooling liquid, marvelling at the sheer joy at the feeling it gave, descending towards the stomach. Quite like old times I told myself. Almost immediately I could feel and sense a build-up, as if my oesophagus was violently rejecting it, and as it rose up, with what it seemed the speed of a bullet, I closed my mouth tightly, only to find the whole glass of liquid pouring out of both nostrils, much to my disgust and the shock of my wife.

I soon realised that with the re-plumbing, my gullet was so much smaller, taking me ages to chew food smaller before swallowing, and I had no epiglottis. If I ate too quickly, that would push the acids into the oesophagus (those very essential acids which break-up our body intake), upwards into the back of the throat, causing a terrible burning to the soft tissues. So the answer was, eat and drink slowly.You soon learn not to lay in the prone position just after drinking anything.


That was in 2004, but I had already slept on my own for the previous ten years, as in 1994, I had fitted American Self-Cleaning Heart Valves, and for quite a few years their night time ticking (terribly loud) was disturbing the wife. I have had them in for 19 years, and never a days trouble. Thank-you America!

 


 


Terry Duga, Indianapolis, IN - 1995

I have been taking an acid blocker for a number of years. I was put on Prilosec after my partial laryngectomy in 1993. I kept on it until Prilosec went generic and insurance stopped paying for it. I now take Zantac.

 


 

Linda Palucci, FL - 2002

I take 1 omeprazole in the morning and the heartburn problem is eliminated.

 



Marlene Haynes - 1996

I was diagnosed with acid reflux after my laryngectomy. They were testing me for swallowing problems after my surgery and I was prescribed Gavascon, four per day, two in the am and two in the evening. That was in 1996 and sometime in between then and now I was prescribed Prilosec (omeprazole). I still take it twice a day every day.


The doctor asked me how long I'd had acid reflux, my answer was I never knew I had it until now.... Everytime they give me the swallow test the stuff backs up. I've never been told why, hope I can learn about this here. I try to stay away from acid foods and keep taking my medicine.

 


 

Lynn Foti, Akron, OH - 2009

I never had acid reflux prior to losing my larynx and esophagus. After I was allowed to eat again, my ENT said I had acid reflux and would have to take medicine for it, probably for the rest of my life. I always thought it was because he had to construct a new esophagus for me from my inner forearm, but now I see most larys have it too.

It really doesn't bother me a lot except when I eat spicy food (which I love, since I am Sicilian). I am so grateful to be here and able to enjoy my son and friends and family, it is, like a lot of other things.... a small price to pay. In the greater scheme of things we larys deal with, it isn't too much. I am sometimes frustrated by coughing up mucus in a crowded place and the constant runny nose, but all those things can be tolerated. Am so enjoying my garden; have tomatoes and peppers already! My flowers, and just being alive. I know so many things can happen down the road, and I want to be sure to grab every bit of life I can while the grabbing is good.

Thanks to WebWhispers for all the information, comaraderie, and help; I feel like this site has made all the difference.

 


 


Bruce Turner, Brisbane Australia - 2004

I have suffered from GORD (Gastro-Oesophageal Reflux Disease) for most of my adult life. I was diagnosed with a rare type of cancer, Chondrosarcoma, in my larynx in early 2004.

http://en.wikipedia.org/wiki/Chondrosarcoma

I had a lot of trouble with food intake via Nasal Gastro Tube after my total Laryngectomy. I couldn't keep any food down, and lived on milk for three (3) weeks !

I was then diagnosed with Barrett's Oesophagus (without Dysplasia), and had a Laparoscopic Fundoplication operation in 2005. This operation helped a lot to reduce my reflux, but I still take 40 mg Pantoprazole (Somac) of each day .

 


 

Carl Strand, Mystic CT - Radiation 1991, Laryngectomy 1993

I was diagnosed with gastric reflux disease and a hiatal hernia years before laryngectomy and have taken Prilosec or the generic equivalent for about twenty five years. I also have to sleep with a wedge or my bed elevated six inches at the head end.

In spite of all this, I have been diagnosed with Barrett's Esophagus, a premalignant change in the lower esophagus caused by acid reflux. I have gone to Prilosec twice daily to keep the reflux under control. My GI doctor is scheduling endoscopic exams annually to monitor the condition.

 


 

Frank Watkins, Greenfield Wi - 1985

I been cancer free ever since, thank the Good Lord for that. I had acid reflux almost from the outset of my surgery. Thought it was heartburn and had to live with it. After 3 years of pain and agony I finally mentioned it to my ENT, who casually said I was a fool for not saying anything sooner and he gave me a prescription for Prevacid.

Needless to say that did the trick, and I have been free of acid reflux ever since.
Lesson here, Let your docter know everything that bothers you.

 

 


 

Joe Hilsabeck, Edelstein, IL - 2009

 

I became a lary in 09 and had reflux for about 2 years, I used omeprazole with sucess. Doctor seemed to think in my case the feeding tube was the cause of some of it. It started to slowly improve over time, I now only use an antiacid occasionally, when I eat certain foods.

The biggest problem I have is if I bend over any time, reflux or bits of food will just run out of my mouth. I have learned to squat instead of bend. However, I didn't have a stomach pullup or a similar operation andmine now can be controlled by diet.

 


 

Pat Sanders, Birmingham, AL 1995

 

I was going to write about my history with acid reflux but I had written about it in 2001 for HeadLines, comparing before lary to after. So this is an update to Then and Now.  I sleep on a slanted bed and use a wedge pillow, try not to eat at night... take a Prilosec about an hour before supper (If I miss it, I take it at bedtime)... and here is the story of how I learned about acid reflux:

ACID REFLUX – THEN & NOW by Pat Wertz Sanders

reprinted from Headlines, July 2001

A few days ago, I was preparing to write in to our online support group to continue the discussion about acid reflux and to make comments on what everyone said. Part of what I do in writing, editing HeadLines, and working on our web site information is to gather material and "put it together". I planned to mention again the "silent" reflux that several reported having prior to their throat cancer, when I was suddenly struck by how this affected me personally.

Before my laryngectomy, I had acid reflux - the kind that mostly didn't show and tell. I never had "heartburn". Back then, you didn't see the ads on "acid reflux" on TV telling you what it was and what to do about it. It was called "indigestion" or "heartburn" and they showed a figure with a glowing fire in the chest area. Tums or Rolaids were touted as the cure. And, it was something that everybody had! I never had that fire in the chest.

I would come in from my sales calls at varying times in the afternoon or evening, would check in with the office, make appointment calls, write reports, and then put it all aside until the next day. At that time, I would get comfortable, get my cigarettes out (I didn’t smoke during the day), fix a drink, and either get on the telephone with a friend, check out the news or start cooking supper. I did not realize that smoking, drinking, and eating late suppers, in addition to sleeping flat so gravity didn't help the acid to stay in my stomach, were creating a situation that was not good for me. I had acid washing up through my esophagus and into my throat at night and I didn't know it. I used to say I could eat anything and had a cast iron stomach… but it was sneaking up on me. I often had a sore throat and was hoarse but it would get better, so I blamed that on allergies and drainage or having to talk loudly over shop machinery. One night, I was awakened by a stomach spasm that gushed acid up like a geyser and by the time I jerked upright, it had hit the back of my nasal passages. Burned like hell. I was hoarse and had a sore throat for a week. This time I knew what caused it but I still didn't think about the other sore throats. Should I have gone to a doctor at that point? Yes. Did I? No. I was in denial that I had a problem other than that one time.

I think acid reflux was a contributing factor in my vocal cord cancer. That is my opinion. This is in addition to smoking and drinking, a deadly pair in which the combination is far more dangerous than either one alone. Until recently, very few doctors agreed with reflux being a causative factor, but now some are indicating there might be something to it. Looking at this from another viewpoint says it is not the acid reflux but the smoking and drinking that causes the cancer…along with aggravating acid reflux.

After my laryngectomy, I mentioned the reflux and was put on Prilosec. I took it regularly for a while but gradually cut back to every other day, then a couple of times a week and then, only when I needed it, and I didn't need it very often.

In the last couple of months, I have had an occasional problem with swallowing, not far down but seemingly at the back of my throat. Always in the morning. Synthroid, as small as it is, would stick a little before going down and once the water came up through my nose and the pill stayed in my throat. After I had sipped some coffee, it seemed to open up and I had no problem swallowing at breakfast or the rest of the day. This last week, it happened every morning. I could look in my throat and see swollen and slightly pinker tissues than usual and it felt like it does when you have sinus drainage...but there was nothing there. My throat felt just a little raw but no white patches, no fever. I hadn't a clue.

I was thinking about the acid reflux discussion when the lightbulb lit up over my head. I was having acid reflux at night again, when I didn't know or feel it. The acid was causing swollen tissues. Being upright during the day, gravity helped and it was not a problem although one day I did eat too fast and couldn't get the food down so I was probably having some swelling I couldn't see.

The day I realized what was likely happening, I took a Prilosec before supper and did again the next day. The third day, the morning pill went down easily. I will continue to do this to see if that ends my problem. I will also have an earlier supper...and cut out the ice cream snack right before bedtime so my stomach is not full. My bed is already raised on blocks, but I had been careless about the rest. I had my checkup last month and everything looked clear. But if this doesn't get rid of it totally, I'll see the doc for another look.

Who says we don't continue to learn? Many times has someone written to me to say...I already knew that, I just forgot? This just happened to me. I already knew. I forgot.

 


 

A few more comments.....

I received a note from David Arnaud, who said, "Yes, Pat, my Doc at MD listed acid reflux right there with tobacco use as major causes of cancer of vocal chords and voice box."

After the article above, I wrote more about the search for professionals who believed this.  It was in this newsletter in 2004.  I don't want to copy the entire article because some of the links are no longer working.

LPR - Laryngopharyngeal Reflux

After my laryngectomy, I asked a lot of questions about laryngeal cancer causes other than smoking or drinking. I wanted to know if breathing in acids or alkalis were a problem since I had been in a lot of contact with chemicals. I asked if stomach acid could be a cause and was told that it was a known cause of esophageal cancer but not of laryngeal cancer.

This never made sense to me since I knew I had awakened at night with a rush of acid coming up into my throat and sometimes even up behind and out of my nose. The next day, that whole area would burn, I would be hoarse, having to clear my throat and cough to clear the mucus. This area was a much more tender area than the esophagus. After the surgery, we raised the head of my bed and I took medication so it has been better.

I learned to talk and played with my new computer, installed the day I came in from the hospital, but I did not have a service provider until 6 months later. Even after I got Compuserve (with a limit of 5 hours a month!), there was no big Internet with a Google search engine in 1995. I learned to chase down information on the fairly new World Wide Web, in which you had to find a site that related to what you were looking for and from there try a connected (linked) site. I ran into a lot of dead ends in my searches and particularly so in my search for what happens when stomach acid hits the throat and vocal cords.

During all this time, I had been calling on patients at UAB Hospital and, in addition to teaching them to talk or showing them equipment and answering questions, I would always ask if they had been bothered by heartburn. Almost before I could get the question out, the caregiver would jump in to say, "Oh, Boy, does he ever! He ate TUMS all the time." I would always tell them to be sure the doctor knew about that because there were some one-a-day medicines that could help a lot and they did not want to start having acid come up into the new throat.

Finally, I found the Voice Center at Wake Forest University where there was a great deal of research and their conclusion was: there was a different kind of reflux, one that usually did not cause heartburn, and it did cause throat cancers. Then, I saw a brochure, put out by the drug company AstraZeneca with information developed by The Center For Voice Disorders of Wake Forest University and the Department of Otolaryngology, Bowman Gray School of Medicine. I rejoiced that the word was out.

Next, I found from the American Academy of Otolaryngology:

What is GERD?

Gastroesophageal reflux, often referred to as GERD, occurs when acid from the stomach backs up into the esophagus. Normally, food travels from the mouth, down through the esophagus and into the stomach. A ring of muscle at the bottom of the esophagus, the lower esophageal sphincter (LES), contracts to keep the acidic contents of the stomach from "refluxing" or coming back up into the esophagus. In those who have GERD, the LES does not close properly, allowing acid to move up the esophagus.

When stomach acid touches the sensitive tissue lining the esophagus and throat, it causes a reaction similar to squirting lemon juice in your eye. This is why GERD is often characterized by the burning sensation known as heartburn.

In some cases, reflux can be SILENT, with no symptoms until a problem arises. Almost all individuals have experienced reflux (GER), but the disease (GERD) occurs when reflux happens on a frequent basis often over a long period of time.

What is LPR?

During gastroesophageal reflux, the acidic stomach contents may reflux all the way up the esophagus, beyond the upper esophageal sphincter (a ring of muscle at the top of the esophagus), and into the back of the throat and possibly the back of the nasal airway. This is known as laryngopharyngeal reflux (LPR), which can affect anyone. Adults with LPR often complain that the back of their throat has a bitter taste, a sensation of burning, or something "stuck." Some may have difficulty breathing if the voice box is affected.

At last, GERD and LPR was being recognized...   

Pat


 

 

 

 

 

 


 

Always Get A Second Opinion!!

 

The following article (lifted from the HuffPost) reminded me of my own near-miss nightmare a few years ago.

 

“A New Zealand dental hospital is under fire for a lab mix-up that led surgeons to remove part of a jaw from a woman who had been misdiagnosed with mouth cancer. A pathologist at Medlab Dental, part of the University of Otago Dental Hospital, dropped two tissue samples on the floor and then mixed them up, according to the Otago Daily Times, which published an investigation on medical labs last week.

The 63-year-old patient -- who was suffering mere swelling from a tooth implant -- was mistakenly told she had mouth cancer. The right side of her upper jaw was removed. Bone and blood vessels were taken from her leg to help reconstruct her jaw. Now the woman has trouble walking.


"I can't for the life of me understand how you can get tissue samples mixed up," said Dr. Iain Wilson, the oral surgeon who sent her biopsy to the lab, to the Herald on Sunday. "I am astonished and horrified by these lab mix-ups."


The hospital has apologized to the patient, who has contacted a lawyer. Meanwhile, New Zealand's Health and Disability Commissioner is investigating, 3 News reported.”


ALWAYS … ALWAYS … GET A SECOND OR EVEN THIRD OPINION OF DIAGNOSIS!


About seven years ago I went to my primary doctor about the raspy voice and coughing I had experienced for a month or so. He diagnosed it as esophagitis and gave me an inhaler to treat it. Things got worse over the next couple of weeks until he called one day to tell me (while choking back tears) that he had misread my x-rays and needed me to come in for further checks immediately.


I did so, and after scans and other tests it turned out I had two kinds of lung cancer, both the fast and slow mover. They were inoperable and would have to be treated with radiation and chemo. After travelling to M.D. Anderson for confirmation of that diagnosis, I underwent treatments which have kept those cancers in remission for six years now.
Sadly, my personal doctor, who was so honest in revealing his mistake, confessed to me that after being diagnosed with advanced Alzheimer’s at the Mayo Clinic, he had returned home and had all of his recent diagnoses checked by other physicians … thus the call to me. He has since died of that affliction, but I would have died too, were it not for his courage and honesty, as well as Anderson's second opinion.


Always, Always, get a second, or even a third opinion of diagnosis!


Nuf-Sed
Bob Keiningham

 

 

 

 


 

 

More Pics from the 2012 IAL in Durham

Awards and Program pics from our WW Dinner.

These were sent to us by the newly appointed IAL News Editor and BOD member, Charles Moore, also a long time WebWhispers member, so thanks to the IAL we have these:

Top row: Charles M & Pat S; Jeff VH, Pat & Mike; Chatting in the Lobby
Middle row: Guest Speaker, Jan Lewin of M D Anderson; Certificate Awards
Bottom row: Dutch Helms Travel Grant, VI Scholarship, Awards Time

 

Up Close and Personal

Marlene Haynes, our fair and charming lady who works with us as WW Forum Manager took some member pics for us:

Top row: Susan Reeves; Wilma Husak; C Mike Clark
Middle row: Herb & Sally Simon; Mike Rosenkranz & Hank Luniewski; Viv & Jeff Vanden Hogen
Bottom row: Bob Herbst; Tony & Laura Talmich; Elizabeth Finchem

 

 

 

 

 


 

It’s Mother Nature’s Way

 

I have been a laryngectomee for eight years now, and my life has been transformed in that time. I went from a young lad to a man as a soldier for King George VI, serving in the vast desert lands of Egypt and the Sudan. Having awesome responsibilities at times, amongst a simple, poverty- stricken people, where life was held so cheaply by many, I can honestly say my initial character was formed.

Then, in many years as a police officer in London, dealing with the worst our society can produce, duty, honesty and truth were my main pillars of strength. In both of those positions, I was trained to report and write about things factually, never to “gild the lily” as they say. By the same token, when giving evidence at either a court martial or civilian court, never to show any emotion in the spoken word.

But how all that was to change, when I became a laryngectomee. I went for several months before artificial speech became available to me, and I could only communicate by writing. As you all know, that is so terribly frustrating. Everyone is normally talking about something else by the time you have written your words of wisdom down. I wanted to say, “Thank-you.” to those wonderful nurses who cared for me, so I wrote notes to them. I was amazed to discover that I could put emotion into those words by way of poetry, a thing I had never even thought of before the operation.

I went to an Adult Education Class at College, really to find a way of increasing the speed of my writing, but found the Creative Writing and Poetry Classes fascinating and spent a lot of spare time reading the history of prose and poetry in every part of the world. I was quite frankly amazed when one of my poems was being read out loud by another student. This very silent old age pensioner, hearing my work for the first time, saw students wiping tears from their eyes. My writing was affecting them, something which my old voice certainly could not have done.

I was advised to go on to University, which I thought ridiculous at the age of 74, having been forced to leave school at the age of 12 through the London bombing during WWII. But Tilly, my wife, thought it an excellent idea, however daunting the prospect to me. So, with trepidation, I enrolled. Luckily, at about that time I had the TEP valve installed, and acquired this robotic voice. To cut a long story short, I graduated three years later in Creative Writing, Poetry and Writing for Stage and Screen. At the ceremony in Canterbury Cathedral, as I approached the Chancellor in his magnificent gown and cap of green and gold, he spotted the white bib at my throat and, on shaking hands, asked if I had a sore throat. I explained that I had no vocal cords through throat cancer and was talking with an artificial valve in the throat, little realising that my words were being broadcast via his microphone to the vast audience. The clapping was immense.

It wasn’t just for me; it was for every one of you, who has survived cancer, and is speaking again and living life normally.

My first public speaking role came when I went with an ENT Nursing Sister, to help with a lecture to Red Cross Nurses and Cadets, and quite enjoyed it. I then helped out at a workshop for medical professionals, who knew nothing really of laryngectomees. I had a full speech there and made them all laugh with several jokes about larys. I belong to five Head and Neck Cancer groups in the county of Kent and am the patient representative in my county for all Head and Neck Cancers on the Kent & Medway Cancer Partnership Group. In addition, the government funded the high-powered Disease Oriented Group, with cancer consultants from throughout the county and little old me as the patient representative.

I was the delegate this year at the National Club of Laryngectomees for our county and gave a speech, which received a great ovation. Not only was I approached by people afterwards from Scotland to Cornwall, who had read my WebWhispers’ monthly columns, but the treasurer of the National Club, who lives in Belfast, asked if I would be interested in doing a double act with him around the UK Universities.

By belonging to these responsible groups, I feel I have been of use in making life easier and safer for us laryngectomees, in that the county police training school and the county fire brigade training school now include resuscitation for neck breathers in their first aid training. We must look after each other. That is why support groups are so essential, and why WebWhispers has such a vital part to play.

I now write for WebWhispers regularly, the IAL occasionally, ten clubs in Australia, one in India and four organisations in the UK.

Who says there is no life after cancer?

 

 

 

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