distributed by American Cancer Society, edited by Pat Sanders
Headlines is now 4 years old and has grown from being mailed out just to the fairly small local group to having 400 on the mailing list. In addition, it is placed monthly on the email lists WebWhispers http://webwhispers.org , which has about 400 laryngectomee members, plus professionals, and Larynx-C, about 160 people who are interested in cancer of the larynx. It is now available online all the time on the new IAL site (International Association of Laryngectomees) at http://www.larynxlink.com and the site for the National Association of Laryngectomee Clubs of the United Kingdom http://www.laryngectomees.inuk.com
Every month I receive several newsletters from other areas with reprints of one or more of our articles. Many people report that they print them out to share with their support groups. A good idea and one we welcome. Some SLPs share them with their patients.
The personal stories of laryngectomees and caregivers are loved by new laryngectomees and their own caregivers. They learn from what you write about your experiences and sometimes it saves them pain or gives them hope. The articles by Dr. Peters and the other medical personnel are used over and over to explain the what and why of our treatments and to help us all understand.
Since we keep the early issues available, we have to keep new and different stories coming. So if you have a story to tell or thoughts to share on being a laryngectomee, write it up and send it in. Doesn't matter if it is a little ragged. We'll clean it up, shine it up, and put it on display in HeadLines.
Send to: firstname.lastname@example.org
Doctor, I hear people talking about a fistula. Exactly what is a fistula, why do some people get one and what can be done to help it to heal?
All right, let's talk about fistulae. By the strictest definition, a "fistula" is a connection between two epithelial surfaces. Epithelium is the lining of an organ or the covering of a body part such as the skin. The organs of most concern in the head and neck are the mouth, the throat, and the esophagus. Therefore, a fistula in our area represents a connection between the mouth, throat, or esophagus and the skin of the neck.
What's the problem with a fistula? Well the most obvious problem is the leakage of saliva and anything else you swallow through the fistula onto the neck. The ramifications of this are obvious on social, convenience, and nutritional levels. Nobody wants to go around draining onto your neck all the time. Also, if the fistula is near your stoma some of this stuff can go down into the lungs and possibly lead to pneumonia or a lung abscess. All of this leads up to the fact that we try to do everything we can to avoid a fistula.
What are the main causes of a fistula? At the time of surgery we try our best to close the inside of the throat and esophagus to avoid a leak. We use antibiotics during and shortly after your surgery to cut down on the chance of infection. The main thing that leads to a fistula is poor wound healing. Things such as too much tension on the wound, a wound infection after surgery, poor nutrition, continued use of alcohol and tobacco, and prior radiation are the usual things that lead to problems with wound healing and the formation of a fistula.
So if a fistula develops, what can we do about it? The first thing we, as surgeons, do is to encourage it to drain into an area that will minimize the chances of infection in the rest of the neck and keep the drainage out of the stoma. Given enough time most fistulae will heal on their own without additional surgery. There is of course the hassle factor of dealing with external drainage and needing to use an alternative method of feeding such as a PEG during the healing phase. Surgical closure is reserved for those fistulae which do not close on their own and those that pose some danger particularly to the stoma and the lungs.
What are the long term side effects of a fistula? The most commonly encountered problem is a stricture or narrowing in the upper esophagus which may affect the ease of swallowing. Most patients that develop a fistula do not experience any long term problems.
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
THIS IS A DAY TO CELEBRATE. I HAD A LARYNGECTOMY WHEN I WAS 60 YEARS OLD AND NOBODY THOUGHT I WOULD MAKE IT...SIX WEEKS IN THE HOSPITAL, TWO OF THEM IN INTENSIVE CARE. WELL, TODAY IS MY BIRTHDAY AND FOR A LADY TO TELL IS IMPORTANT NOW BECAUSE I AM 80 TODAY. THESE HAVE BEEN WONDERFUL PRODUCTIVE YEARS. I WANT TO TELL ALL OF YOU WHO ARE NEW TO THIS GAME THAT THERE ARE STUMBLING BLOCKS ALONG THE WAY BUT IN THE LONG RUN NOTHING IS IMPOSSIBLE. I AM STILL GOING STRONG IN SPITE OF POOR VISION, WHICH IS AGE RELATED AND NOTHING TO DO WITH CANCER. SO TAKE HEART, Y'ALL, AND KEEP SMILING. MARTHA REED 12/3/1999
What Did Happen To Us? by Pat Sanders
I remember someone asking me what I would do in retirement and suggesting that I might like to find a charity where I could volunteer. I answered that, having been in sales for years, any charity would want me to sell something or do fund raising and, if I were going to do that, I might as well keep working part time and get paid for it. HA! Fate was sitting there smiling, as in, "Just you wait and see!"
A recent message on WebWhispers from Parnell Stratton of Conway, SC, asks, "Is there a conspiracy among the doctors who operate on us? Are they replacing the larynx with something that makes us want to help others? I mean, I can understand wanting to help others with our problems but why do I feel the need to help others that that are not laryngectomees? Or am I the only one that feels that way? It isn't the holiday season that is causing me to feel this. I've had it ever since my recovery from surgery. I don't feel I am obligated to do something to pay back for having my life span extended or saved. It's just something I want to do. I sense from many of the messages that I am not alone in this. Since my becoming a laryngectomee and getting connected with WebWhispers, I have witnessed more care and giving of help from a small group of people than ever before. Perhaps I am more attuned to it now, I don't know. I do know I want to do more than I have done. Larys have my first priority, but if I can help others along the way, I will do it." Par :-)o
So, when they removed the larynx, did they add a little bit on to the heart? Of course not,
but then why are we out there at the schools, giving talks to other cancer groups, helping the new people in our support group, giving what we can of both money and time when anyone is needing help. What happens to us emotionally when we go through this surgery that we come out of it finding ourselves reaching out to help others, feeling emotional at family gatherings, having tears in our eyes when our country's flag is raised, crying over things we handled with dry eyes before our surgeries? Why am I blinking back tears as I read what I just wrote?
So many of us say we wouldn't go back. We have been through a huge learning experience that changed us forever and there is no way to go back and be exactly the same. Is it because we felt close to death? Possibly, but many of us found our cancer early and, as long as we removed it, our chances were extremely good to live a full life.
One answer came from Paul Galioni of Susanville, CA, who said, "When we found out we had cancer we faced our own mortality. It was an internal enemy that was bent upon destroying us, thus it is fundamentally different from facing an external enemy—as we have all done to one degree or another our entire lives. This forced us into a spiritual crisis and we had to take a fundamental look at our 'essence'. When this happens, it can be said that we have had an peak experience, an epiphany, and our life forever changed."
Is it the period of silence? Do we, of necessity, learn to be more patient? Maybe, but I haven't really noticed having a great deal of forbearance for people who waste my time. Maybe that's because I have discovered how valuable my time can be since I found no experience in my "former" life that equals the satisfaction of offering someone hope.
Jim Lauder of Lauder Enterprises has shared a couple of great hints for the Servox.
If you should lose the wand that you use as an oral adapter, see your dentist!! The tubes that are used in the oral adapters are saliva ejectors that can be purchased at a dental supply house. You can probably get a supply of them from your dentist for free if you ask real nice.
Another tip for keeping your Servox in shape. Change the O-ring to a thicker O-ring. The one that comes stock with the Servox is thin and allows the head to be tightened down too much, causing the machine to work too hard to get the same sound that you would if the head were a little looser. The Servox is more likely to require early service if the head is not adjusted properly. O-rings cost about $0.22 at your local hardware store. Check the plumbing dept. Every Servox that comes to our shop leaves with a new thicker O-ring, except for new machines that are under warranty. We do nothing to these machines if they are under warranty as to not void the warranty. We send them to Siemens and have Siemens return them to the customer.
A little background, I was operated on in August 1993 for a total laryngectomy and while in the hospital, as I remember, was not told in no uncertain terms, that I should irrigate on a regular basis and that I should wear a stoma cover.
Having worked in a white collar job for some 30+ years and wearing a tie each day, I had retired and had gone the sport shirt way, so I was not really impressed with the idea of tying a bib around my neck and breathing through it. So for some 6 years I did not do this. I failed to heed the information which I learned during the monthly meetings at the Kirklin Clinic Support Group and the pleadings of my good buddy, Pat.
Well, this past Christmas, my wife and I decided to spend this holiday with our daughter and her family in Florence, Alabama. Since the other grandmother would be there also, my wife and I elected to ease the sleeping arrangements by staying in a motel some 15 minutes away. With the excitement of seeing granddaughters having Christmas and the fun of eating Christmas brunch with some of our daughter's friends, I failed to irrigate and properly take care of my stoma. About 4 p.m. on Christmas day, I attempted to irrigate and had no success. Well, I wound up in the Emergency Room at the Hospital in Florence getting 2 breathing treatments 2 suction treatments. Well that solved the immediate problem.
That evening, things were much better and prior to going to bed, I irrigated and things seemed back to normal. Well, on Sunday morning, the situation was getting worse. I irrigated again and got some mucus out but not enough to really be comfortable. We decided to come home and got here mid-morning. By 3 p.m. I was sitting in the back of an ambulance irrigating and getting suctioned. This cleared up the problem and I was able to irrigate in a normal manner, however come Monday a.m., the same problem came back to haunt me, could not get the built up mucus out and mid-morning was again sitting in the back of an ambulance getting irrigated and suctioned.
I was able to get to see a local ENT here in Tuscaloosa, AL, and he ordered breathing treatments which I could do at home and also a suction machine. By mid-afternoon these machines were on hand and since then I have been able to give myself the breathing treatments and to suction as necessary. Incidentally, these machines and supplies are covered by Medicare.
I am now being faithful in irrigating, sleeping under a cool mist humidifier and wearing a stoma cover when leaving the house. All of this, along with the unseasonable warm weather, has really helped. I am breathing better than I have in sometime. However with the return of cold weather and turning on the heat and its drying effect, I can just hope that I will not return to having problems.
Lessons learned: Irrigate even if you feel that you do not need to, wear a stoma cover ( I use the foam filters from Lauder Enterprises), keep the heat turned down to 70 degrees and monitor the humidity in the house.
Since my wife and I like to travel, I have ordered the dual power humidifier from Bruce Medical and through the local Home medical supply house, obtaining a dual powered suction machine. Will carry these items and also a good supply of sterile water.
I will state that this is the first time since my surgery that I have had this type of problem and I sure do not want to have it again, so irrigating and stoma covers will now become a part of my daily life.
LARYNGECTOMY – A laryngectomy is surgical removal of the larynx, also called the
voice box since it contains the vocal cords. It is located at the point where a division occurs from the single tube that makes up the throat (also called the pharynx) into separate tubes for food going to the stomach (the esophagus) and air going to the lungs (trachea, or windpipe). The larynx is the organ in the throat that, through the use of the vocal cords, enables us to create speech. At the top of the larynx is the epiglottis. It is a valve, located at the top of the windpipe, that prevents food from entering the airway during swallowing.
STOMA - Also known as a tracheostoma. It is the hole in the neck made by redirecting your windpipe forward and creating a permanent opening. After the surgery, your air will move in and out of your lungs through the stoma instead of through your mouth, nose and throat.
VENT - is called button, tube or vent and is worn in the stoma. They come in all shapes and sizes. Curved or straight; long or short; different diameters and made of different materials. They sometimes have a place to tie a band around your neck to keep it in place and some have a ridge around the back edge to hold it in your stoma without a tie. They all have some kind of a flange or collar on the outside to keep them from slipping into the trachea. The main purposes are to keep your stoma nicely shaped and stretched out to the size they need to be for comfortable breathing.
PUNCTURE - TracheoEsophageal Puncture (TEP) is the opening which is surgically created between the trachea and esophagus. A voice prosthesis is inserted in this puncture to connect your windpipe and esophagus.
PROSTHESIS - A voice prosthesis is a small removable silicone tube that connects the lungs and esophagus by way of the TracheoEsophageal Puncture. It has a one way valve at the interior (esophageal) end which prevents liquids or foods from coming back into the trachea. When you cover (or occlude) the stoma, this redirects exhaled lung air through the prosthesis into your esophagus. This airflow causes the upper part of the esophagus to vibrate, and we use the sound this produces, modified by the tongue, teeth, and lips, to form sounds which make up words and speech.
OCCLUDE - Seal off the stoma by using a finger or thumb so air can be redirected from the lungs into the esophagus through the prosthesis.
STENT or CATHETER - A catheter is a hollow rubber tube with a rounded end that comes in different sizes. A stent is usually tapered and solid. Either is used to hold the puncture open or to stretch it gently when changing to another prosthesis. The puncture will close in a remarkably short period of time if one of these is not used when the prosthesis is removed.
HANDS-FREE VALVE - Adjustable Tracheostoma Valve, when used in conjunction with a voice prosthesis, allows hands free operation of the stoma, eliminating the need to use a finger or thumb to control the air passage. It enables hands-free, conversational speech. There are several ways of using a valve but the most common one is using a housing which is glued to the neck around the stoma. The valve fits into the housing and rests in an open position. A slight increase in pressure while exhaling causes the diaphragm to close and divert air through the prosthesis. At the completion of speech, the diaphragm automatically reopens as exhalation decreases.
Ask The Doctor? As laryngectomees, what do we need to watch for in our breathing, wheezing, coughing, sneezing, or running noses, that means we should see the doctor?
People are often concerned that as a laryngectomee you are somehow different in how you deal with your respiratory tract. Well, the short and the long of it is "yes" you are different, but "different" is not necessarily bad. Removing your larynx and diverting your breathing through your stoma has removed the filtration and humidification provided by breathing through your nose, mouth and throat. That means you are breathing in, through your stoma, air that is drier and has more particulate matter. All of this dirty, dry, air can make you susceptible to lower respiratory tract problems.
We have talked at considerable length about proper stoma hygiene to improve the filtration and humidification of your inspired air. Prevention is the absolute best form of staying in good shape. Humidify, irrigate, drink water, wear a stoma cover, spend some time carefully cleaning the area around and just inside your stoma and have clean hands when touching your stoma. Stay moist, use good sense and good hygiene.
Now for the good news about having a stoma -- Your airway is directly accessible for troubleshooting, diagnostic evaluation and treatment. Normal nose breathers don't have that luxury. So what is it you need to look for?
1. A cough which is productive of blood may indicate anything from bronchitis to pneumonia to lung cancer. This needs to be looked into. Sure you may have a little blood streaking in your sputum, particularly if you slip up on your humidification, but if this persists, don't hesitate to check in with your nearest health care professional!
2. A cough which produces discolored mucous usually indicates an infection of some sort. This is the second big issue as it may indicate the need for a chest x-ray to look for a pneumonia. It also may indicate the need for some antibiotics.
3. More crusts in the stoma—add more humidity.
4. Increasing difficulty with breathing, particularly if it comes on suddenly, usually is caused by a crust lodged in the trachea. This calls for some tracheal first aid such as irrigating the stoma more frequently until the crust loosens up and becomes dislodged with coughing. If you are unsuccessful and are still having difficulty, GET SOME HELP!
5. Wheezing which is new in onset and noisy breathing is also usually caused by a crust narrowing the airway. You know what to do here.
6. Lastly, there is such a thing as having no problems and doing just fine. So what is wrong here? Did you get your chest x-ray this year? Remember that your laryngeal cancer puts you in a higher risk group for lung cancer, which can often get to a very advanced stage without the slightest hint of a symptom. Bottom line is an x-ray once a year.
Now for my disclaimer. Many of these breathing problems can mimic more serious health problems having to do with the lungs or the heart. As always, when in doubt check it out (with your doctor).
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
Double Bubble Trouble
The first time I took what was to be a relaxing bath, after my surgery, was when we moved to our new home, after getting married in 1998. We have a beautiful bedroom/bath combination with a huge, mirrored garden tub. I couldn't wait to get everything in place, unpacked, and put up, so I could try out that beautiful tub, with my favorite aromatherapy bubble bath and a tub full of very warm snugly water. I slid my tired aches and sore muscles down into what was the most comforting feeling I had had in weeks. I totally forgot I was a laryngectomee, slid down in the water clear to my chin, and nearly drowned myself. Thank heavens my husband was home and heard me! He came running in there, got me out of the tub and stood me on my head, and I spent the rest of the blasted night coughing my lungs out!
So much for the beautiful, mirrored, garden tub, I take showers now, with a carefully placed shower guard around my neck. Marlene Snider Stan2marl@aol.com
Lary to Lary - Hospital Visitation by Pat Wertz Sanders
Every hospital visit to a new laryngectomee is different and you must use your eyes, ears, and judgment in what to talk about to this patient and family. They all need reassurance that a laryngectomee can lead a good life and will be able to talk again. You will have a chance to tell about and perhaps demonstrate that there are several methods of voice restoration, one of which will be used to teach their loved one to speak again. You are there to answer their questions and let them know that you and the local support group will help and be available whenever possible. Since hospitals and doctors all have their own methods of post operative care, part of what I tell will not apply to your visits. You should understand that I am allowed a great deal of freedom in my visits and encouraged to work with the patients. This is some of my experience in calling on new laryngectomee patients at the University of Alabama in Birmingham, where most of the laryngectomy surgeries in this state are performed. Many of these patients live in small towns in other parts of AL, one or two hundred miles away, and do not know any other laryngectomees so I try to make my visit with them count.
I take with me any printed literature that I think might be helpful, such as some of the American Cancer Society booklets. Call ACS and ask them for supplies to use for this purpose. They have a booklet on CPR, another that suggest foods that will fight cancer or that will go down easy during radiation or chemo. The IAL also has literature. Call on them for whatever they have. I take the full booklet of the archives of HeadLines, our own newsletter which carries a lot of information from other laryngectomees, caretakers and professionals, along with information on our local support group. I recommend Lauder’s book, Self Help for the Laryngectomee, which is supplied here to every patient. Lauder Enterprises gives out pocket size emergency cards and he will send some to you for giving out on your visits. Inhealth gives Laryngectomy Needs Charts, and you might ask both of these suppliers, along with others, for catalogs and anything else you might give out to the patient. Our ACS has crocheted bibs, made by volunteers, and I usually take one or two of those depending on supplies. I also take a pattern for making the simple bibs (May 1999 HeadLines).
Most of the time, the SLP asks me to see the patient, and she tells them that I will be in to see them on usually the third or fourth day, so I don’t call and make an appointment. Before I get there, I stop at the rest room, clean my stoma and TEP, and try out my voice to be sure it is clear. I want my first words to be plainly understood. When I arrive on the floor, I check the room number and say hello to the nurses I know (although they have made no special requirement for me to check in). I rap on the door and then open it (remember the patient can’t talk). In introducing myself, I tell them I have been a laryngectomee since 1995. I ask to turn the TV down or off because I can’t talk over it and I want them to hear what I’m saying. Sometimes I get the nurse to turn off the humidifier if it is making a loud hiss. The quieter it is, the more effective the communication. The patient’s condition and the circumstances will indicate if I talk more to the caretaker or the patient. I usually stand by the patient’s bedside, or I may pull up a straight chair if the patient is sitting in a chair. I want to be near. I do not put down or build up the pain or discomfort they are having at the time. I empathize but don’t spend a lot of time on it because that is not what I am there for and it is not something I can do anything about. For instance, if someone has a coughing spell, I back off while they take care of that, and then I might comment... “I remember how that hurt to cough and it does get better soon. Later on, it won’t hurt at all to cough.” Then go on talking about what it is like to live as a laryngectomee.
Here are some of the things they want to know about themselves...When and what can I eat? Surprisingly, this question often comes before the one on talking. The caregiver is often worried about this and what they can do to help. I explain about the progression of liquid to soft foods and on to solid at their own rate of speed and I usually tell of some of the soft foods that I loved, soups and mashed potatoes with butter and sour cream.
How and when can I talk? Here at UAB, we are taught to talk with a Servox and TEP. There is no esophageal speech taught here and we have no instructors. A Servox is delivered usually the second day after surgery. Sometimes I am the one to open it and set it up. If so, I show them every step as I insert the battery and put the other one in to charge. I have my own Servox with me and demonstrate using the oral device. Then I show them how I speak with the Servox under my chin and explain how the swelling has to go down before it can be used that way. If I am there after the SLP has been in to show the patient how to use the Servox, I answer questions and show them what it can sound like. If they are already speaking, I get them to say a few things with it and I try to help with placement or clarity by demonstration. You have to use your own judgment about quality of speech, because, if someone has had extensive surgery or radiation in some areas, speech may not be clear. I do stress articulation and demonstrate words like BUT-TON accenting the T, and show them how slurred it gets, BUD-UN, if we don’t articulate. I tell them they have to pause between words or phrases, not for themselves, but for the listener, who can fit things together better if they are given a clue where one word or phase stops and another begins. I warn the caretakers and the new larys that they will have to be patient with each other and the caretaker has to stop to look at the patient because lip reading and pointing can be a large part of their communication. It also improves the concentration of the listener. They usually feel better about the “machine” after they hear it demonstrated. I do demonstrate that making a good contact with the head of the Servox makes a world of difference. This is easy to do in the palm of the hand with buzzing it while making a good contact and then tilting so it is not contacting properly. They immediately hear the difference, so I then do the same thing under my chin while I talk and, of course, they totally lose the words without the good contact.
They all want to see what a ‘well healed’ stoma looks like, so I show them and they want an explanation of what they see. It helps if I know the patient is going to be talking with a TEP so I can show them what one looks like in my stoma and I carry a little box with the longer sizes (both low-pressure and duckbill) and the insertion tool. That way they can see the valve at the esophageal end. I take it, put it to my lips and puff a little air through it so they can see the flap move. I show them a syringe that they can use for irrigation and for flushing out the TEP. In talking so much, I always end up with some mucous so I clear my throat in front of them. I don’t hide any problem since it gives me the opportunity to explain what it is and how to deal with it.
Often they ask when they can go home or have questions that have to be referred to the doctor. I explain their doctor will decide that and there are many reasons for stays of different lengths. Bodies heal at different rates and all surgeries are different.
Showering. I have a shower shield with me and show them what it looks like. Most are happy to hear they can shower again and I tell the story about cautiously wearing the shield and then one day being in the shower and realizing I didn’t have it on. I panicked before I realized it hadn’t killed me. After that, I left it off except when I washed my hair, and later left it off completely but everyone does what is comfortable for them. I suggest a hand-held shower massage for ease of directing the flow of water, and explain that a ‘little’ water in the stoma will be coughed out and it is just an unscheduled irrigation
When the new lary has good color and bright eyes, I mention it because they like to know they are looking good. Some patients like to have their hand held. If I feel this person is a toucher (like I am), I hold their hand and tell them they are going to be all right as I look them right in the eye. I want them to know I mean what I say and that they will have things to learn but will live a quite normal life, although with some differences from before. If they ask a question and I don’t know the answer, I tell them I don’t know. Sometimes they or the caregivers will be worried about things I’ve never heard of and I can usually ease their minds. I do not tell them about problems to expect because they may never have the ones that happened to me or to the larys I know. I do give them warnings about the importance of irrigation and humidity and I stress the importance of keeping enough moisture to keep the stoma clean, trachea clear, and mucous softened.
I talk about support group meetings and how important it is for them to join with others where we all exchange information and learn about how others care for themselves. I ask if they are online and, if they are, leave the URL for WebWhispers as well as my e-mail address and my telephone number. I ask for their name, mailing address, and telephone number so I can contact them later and add them to the mailing list for meetings and HeadLines.
Even though I am making new friends, my visit is not casual. It is to teach and answer. I chat with the whole family as well as the patient, but I try not to get distracted from the purpose, except momentarily. My visits vary in length, sometimes lasting an hour. If the patient doses off (remember they are still on painkillers), I spend time with the family, sometimes in the hall. I have made calls when it was obviously not the right time, and I leave the packet of literature and get out of the way.
Here is another interesting thing that can happen. If they are dreading or not looking forward to the visit, their whole attitude changes after they realize we can be healthy, happy and understood! I have had patients who, as soon as they hear me speak, lock their eyes on me and never look away. I have had others that I was able to help form their first words. What a thrill that is! I called on one man whose wife had gone to get lunch. When I walked in, he was playing with the Servox and, before his wife got back, I taught him to say, "I Love You". When she came back in the door with her father, the new lary held his hand up in a “Halt” command and, using the Servox, said slowly, “I….Love…You”. Believe me there was not a dry eye in the room.
Sometimes the visit is ‘cut and dried’ but when it works right and a good connection is made with the patient, it is one of the most satisfying moments I could ever have. Sometimes the patient is so obviously different by the time I leave that it is exciting to know that my visit helped to bring about that change. Occasionally, family members follow me out to hug me and say they now have hope. They often cry with relief.
If I am ever let into Heaven, it will be because of the time spent with these patients when they needed to be shown how to live again.
ADVICE FROM A SPEECH PATHOLOGIST/LARYNGECTOMEE
As a laryngectomee of over 45 years and a retired speech pathologist, I can tell you what I’ve told my laryngectomee patients and friends. Before surgery, your nose and mouth filtered and conditioned the air you breathed. Now the air goes directly to your lungs. The body’s protective measure produces mucus to filter the air and you cough to expel it. As your body adjusts to it’s altered state, you will notice that the coughing decreases. This takes time, six months to a year and you’ll notice that you’re not coughing much at all. Let other people tell you about their experiences. The more you learn the easier it is to adjust.
Because your sense of smell is affected, your won’t notice the odors (gasoline, perfume, strong smells) but these will make you cough without your knowing why. Humidity is so very important as you adjust. If it’s hot and dry, I advocate a humidity gauge in the house with the most comfortable around 40 to 45 degrees. If the air is too dry, there could be crusting and a little bleeding. Don’t panic! The capillaries in the trachea break from the dryness and scare the hell out of you. Just put some moisture in the air, put a warm, wet washcloth up to your neck and breathe normally. People who have plants in their homes usually do well because they have to water the plants to keep them alive.
As a professional, I can tell if your stoma is shrinking, but you can keep a check on it yourself. If your stoma is smaller than the diameter of your pinkie finger, don’t hesitate to tell your Doctor and be sure he checks it out. This is not unusual. I always told my people to keep their stoma tubes and insert them once a week, every week for six months. If it’s too tight, leave it in until it loosens up. After six months, try it once a month. If you do this, you should not have a problem. Hope this is helpful!
Frances Stack,MA,CCC ret. Voiceless1@aol.com
After getting over the "hump" of surgery and recovery, I had very few problems with my job as an auto technician. Working under dashes after three neck surgeries is not easy since the neck isn't as flexible as it once was. Due to muscle and nerve damage, working with my arms over my head for long periods is a bit difficult but I can do 80% of what I did before. It was summer and the weather was warm and humid when I went back to work and I had no idea what changes were to come. As fall arrived, it still wasn't too bad and I plodded along like normal. Then winter! The doors came down, the heat came on and my frustrations started to take over. I had a problem with fumes and dust and dirt floating around with the doors closed.
I have been a "Lary" for less than a year and wasn't sure what I was going through. I started to get doubts about being able to do my work, which led to more frustration. I guess frustration breeds frustration because I started "looking" for other stuff I couldn't do.
It got so bad, I looked into the possibility of SSI. I am only 46 and was ready to give up. I wrote to the WebWhispers group and received a lot of inspirational answers that basically told me that only "I" could decide what to do about my future and my job. One reply that stands out is a letter I got from Ron Stepan, from Canada, also in the automotive field. He told me to "accept what I can do and do what I can accept."
That really hit home. I am now working with a better attitude and trying to do things in a smarter way. I am concentrating on my ability, not my disability.
Sometimes we all need a bit of encouragement to keep going, we just have to ask for it.
Waiting for summer. Steve
Those Who Can, Teach! David Blevins (David6511@aol.com)
I teach. It is what I do. It is what I am. While there are many other, frequently more effective ways to teach than talking, I need to talk to do my job.
"Cancer of the vocal cords". What terrible words these are for anyone. But they are especially terrible words to hear for one who earns his living by speaking. I was too young to retire and I could not imagine life without teaching even though my employer would have kept me on the payroll in a desk job. With the loss of my vocal cords, I needed to find a way to talk to be clearly understood by all of my students, and the sooner the better. I was no administrator, and I loved teaching.
I have been a laryngectomee since October 1998 and I have heard and read the stories of so many others that my own basic story sounds so "ordinary"; so "typical". But at the time, it was, of course, all brand new to me, and a living nightmare.
As is so often the case, it began as a case of laryngitis which would just not go away. Three courses of antibiotics and my hyperactive gag reflex, which kept my family MD from getting a look down my throat with his little mirror, sent me to an ENT (ear, nose and throat specialist - otolaryngologist), and his down-the-nose scope.
What seems so disturbing in retrospect is that more than eight months had passed from my first trip to my family MD with my "laryngitis" complaint, until the biopsy reported those terrible sounding and unfamiliar words: Stage 1, NO MO squamous cell carcinoma of the left true vocal cord. I have since learned that this kind of passage of time before a proper diagnosis is not all that unusual, and quickly learned that a Stage 1, NO MO squamous cell cancer was, if you must have a larynx cancer, about the "best" diagnosis you can have.
The radiation technicians have heard them all, especially the question you might have asked, designed to ease your anxiety and perhaps bring a smile, "After this, will I glow in the dark?" But they were kind and acted as though I were the first to think of that one. On my second visit , I tried, "Will I need a nightlight afterwards?" The technician asked if I wanted any special design to the tattoo she was putting on my neck which would serve as the aiming point for the x-ray machine. She had probably asked a hundred patients that same question. I asked for a butterfly, as I recall.
The mask. I hated it. Despite the fact that it was 95% air surrounding thin plastic mesh, it still felt like I couldn't breathe through it. And I had to fight feelings of claustrophobia, as the mask held my head tightly to the table for what seemed like forever, as that nasty looking machine buzzed and shot radiation through the right side of my neck, and then the left. Laryngectomees always seem to remember exactly how many radiation treatments they received. I had thirty-four. My ENT said that the odds were over 95% that the radiation would kill the cancer.
I taught the entire time during my radiation treatments. My voice was weak and I sounded like someone with laryngitis. The only concession I asked was I found myself saying on several occasions when students were talking out of turn, "I cannot compete", and had to wait for them to get quiet. I made my summertime message on my answering machine in that voice. When I hear it now it sounds to me like the very sound of cancer.
Six months later my symptoms were back and a biopsy revealed that my Stage 1 tumor had now “graduated” to Stage 3 (invasive). A second opinion by Dr. Peters at the University of Alabama in Birmingham, Kirklin Clinic, confirmed the diagnosis. He had a sober look on his face when he said that a total laryngectomy would have to be done since the left vocal cord was no longer functioning, the tumor had become invasive, and the cancer was right next to the other vocal cord. He had hoped that a partial laryngectomy would be enough, since he knew I was a teacher and what the loss of my voice might mean to me. But along with the bad news, I also recall the words of a medical student who accompanied Dr. Peters. He said, "This is not the end of the world. We know laryngectomees who continue to be teachers, preachers, and salesmen." This is among the most important messages I received as a laryngectomee and I pass it on to the next person diagnosed.
"Give him a copy of Self-Help", Dr. Peters told the SLP. We all knew I was not going to have him do the surgery since I wanted to have my operation close to home so that my children might visit me. She asked for confirmation since they provide that book only to those who would be having their operations at UAB. "Yes", he said. I read it three times before going into the hospital.
I actually thought I would be able to return to work within a couple of weeks of the operation. Silly, although I know of people who do. My employer somehow knew better and obtained a substitute for me for the rest of the Fall semester. I was kept on the payroll and given research to conduct with much of it on the Internet which I could do from home.
I worked on learning the artificial larynx since my ENT insisted on the stoma healing before doing the tracheoesophageal puncture procedure in preparation for inserting the voice prosthesis. I was uncertain whether my insurance would pay for an AL, so I got a refurbished AT&T one from the phone company for $130, and had that amount stretched over three or four payments on my phone bill. It would be some time later that I would discover how much better a Servox was after being loaned one for several months. I have heard the Servox called the "Cadillac of ALs”. Actually, since it is made in Germany, "Mercedes" might fit better. By comparison, my AT&T was a “Yugo", with a few miles on it; however, it did run on an ordinary nine volt battery and had more tone variation.
I was not very good with the AL at first. I tried too hard. I guess I thought it must be difficult, so I needed to try harder. Wrong. I made that same mistake years earlier trying to learn how to play golf. Smooth and easy does it. But I made an almost instantaneous improvement over a weekend when I finally relaxed and allowed that vibration and buzz to penetrate deeply into my throat, esophagus, and mouth. I had always spoken distinctly, so careful articulation was natural and I learned that sometimes not trying so hard pays off. I eventually got very good with the Servox but my trip all the way back to the classroom took a little longer.
I haven't seen the showering tip that helps me avoid getting water into my stoma when showering---I leave the foam square on until I'm almost done with the shower. It gets wet, but so far in 4 and ½ years it has served me well.
One other thing, instead of a standard shower head I found an extension that drops the shower head down about 14 inches with a swivel head and a shut off right before the shower head. I found it at one of the home center stores.. Al Keneda
Using Foam Filters with Sensitive Skin
To prevent skin irritation from foam filter adhesive, I use "Micropore", The Paper First Aid Tape" made by 3M. It is for sensitive skin, easy to remove, lets skin breathe, is hypoallergenic, and is available in most drug stores.
This tape is approximately the same width as the adhesive strip on the filters. I place a piece of the tape on my neck in the position where I am going to place the filter. Then attach the foam filter to the tape. It works like a charm. Karl Bowles
"THE SOUND OF SILENCE"
When I saw you in Intensive Care, after your operation, your body looked like it had been through a war. It had. Your face and neck were so swollen, tubes everywhere, eyes shut, bags of medications going into you and some coming out of you! I couldn't get close to you to kiss you and tell you that all had gone well... because the bedrails held you hostage. I could barely reach your hand to hold and I wondered how you must feel, having lost such important parts of your identity....the thing that made you "you". For a few moments I saw your eyes flutter and you squeezed my hand tightly. I felt your precious grasp, and in return I gave you all my energy and love. I knew you were in there somewhere and you knew I was there with you, too. The silence was deafening.
Your struggle to come to terms with your new way to breathe was painful to witness. You were frantic and so sure that you were not getting enough air in your lungs, even though you were breathing very well through your new stoma.....but it took time for your brain to adjust to a different point of entry. As you calmed down, I leaned over to you, so you could "whisper" your feeling to me. It was at that moment that I realized I would never hear your voice again! This completely devastated me and I felt so lonely and afraid. Could I be strong? Could I make it alone? Was this a taste of that "someday" no one wants to think about? I needed you. You were always my rock, my strength. What would I do now? How could I live without you? The sound of silence was deafening.
Days later, I remember the nurses would call me at home ( 2 hours away), to come and comfort you because you were having bad reactions to every drug they gave you. You had no sleep, no food, for 18 days straight. Your 10 day hospital stay turned into 30 days. Finally I decided I would stay with you and sleep in a chair in your room for the next seven days, hoping that my presence would soothe and quiet you and allow you that much needed, healing, sleep, while I watched over you and became your advocate, monitoring "what" you were given (and NOT given). Your face told me you were glad I was there, but your voice still said nothing.....the silence was deafening.
Your "J" tube feedings distressed you so much that trying to eat again, after your stomach "pull up" was almost impossible, because you were so uncomfortably full. So I convinced the doctor to stop the feedings and let us concentrate on regular food (your ultimate goal, after all), with Ensure in between. I could take care of you. I am very capable. "Show me what I need to know ", I pleaded. He agreed, but the "J" tube stayed in....just in case it didn't work out. Home was what you needed, we all knew.
When we got home again, I washed, shaved, and bathed you......made mini meals, little and often, gave you your meds, flushed your "J" tube 3 times a day, took you to all your doctor appointments (four in one week!), encouraged you, loved you, ...jumped when you wanted something. My whole world revolved around your every need because I am the strong one now, your rock, your strength. I encouraged you to speak to me with your new voice. You did so well at the hospital with the speech therapist. You caught on immediately........ but you had nothing to say. Perhaps 41 years of marriage doesn't help that part of it. We get to know each other too well. Could you at least make some noise in this house, so I'll know you're here? The silence is deafening.
Now you're not eating, you're sleeping, sleeping, sleeping. You've become so weak and despondent. Your depression affects all of us, especially me. But I know that you can't comprehend this until you are able to totally heal yourself inside. I thought you would "blossom" at home but this was not the case. What am I doing wrong? What have I forgotten? Tell me. Talk to me! Still you have so little to say. Are you actually here with me? Are you really in there somewhere? Squeeze my hand. Look at me. Make a noise. Let me know that all my love and caring is wanted. Get well! Get strong! Don't you see…, I miss you. Talk to me, please. I can't stand the quiet. I'm so lonely and fearful and emotionally exhausted. You must realize that I, too, have lost my identity. But it's all right, because I'm the strong one now. I AM the strong one. I can hang in there....just show me how. Don't stay in your silent world....come back to mine. The silence is deafening.
AVIS KAESELAU, Cape Cod , Mass. "avis kaeselau" <email@example.com>
Comments On Irrigation:
From just my observations and reading, it is amazing how often raising humidity turns out to solve so many of our mucous problems, helping to prevent crusting, plugs, and even mild bleeding.
But there is a disagreement among some professionals regarding tracheal irrigation. There are some laryngectomees who start out irrigating daily, keep doing so indefinitely, and do very well. Of course there is the question whether someone does well 'because' of doing some procedure, or 'despite' doing it. This is the problem with anecdotal or testimonial evidence, and why research is needed to answer these kinds of questions with more confidence.
There are others who cut back on irrigation to an as-needed basis, or stop doing it altogether as they (1) find other ways (such as good filtration) to keep things out of their lungs which might need to otherwise be coughed up and (2) keep up the humidity in their lungs through adding humidity and/or conserving it.
We can get lazy or careless regarding the first, and doing the second is not at all easy. It requires (depending on where you live, the season of the year, and your home design) adding humidity to the air generally, and further adding to that at the stoma level through the use of an HME or always dampened stoma cover. It is hard to get too much moisture into your lungs via water vapor.
One final thought: you would not have thought before your laryngectomy that squirting water into your lungs was a good thing to do. If you can keep the humidity up in them without doing so, it would logically seem preferable. Mother Nature's designs are usually pretty good.
David's points are actually quite valid. He emphasizes the role of humidification and actually reserves irrigation for more emergent situations. I think that as you get further out from your surgery that scenario actually becomes the reality of stoma care. WE tend to emphasize irrigation in the new laryngectomee because we feel that it probably represents the best way of dealing with stoma related emergencies, the most common of which are a mucous plug or a large crust. If we fail to stress the importance of irrigation while you are in the learning stages of your new life then you might neglect it as a useful tool when you really could benefit from it's application. Bottom line here is "wetter is better".
Dr. Glenn E. Peters
You are unlikely to be around a laryngectomee for 5 minutes without hearing the word mucous and if you get two or more of us together, we talk more about mucous than we do about our new voices.
Excess or thickened mucous is a problem for most of us. It is secreted by the mucous membranes for protection of the esophagus and the trachea. Too little and we are all dried up; too much and we cough it out from the stoma, cough it up from the throat, have trouble swallowing and have trouble talking through it with TEP or ES speech. The thicker it is, the worse our problems become but we can't be without it, so what do we do? We THIN it.
Saliva, another problem of - too much, too little, or too thick, is a clear, viscous, alkaline secretion from the salivary glands. It will normally decrease as we age and, as it lessens, the sense of taste is affected, speech can be more difficult, food is not digested as well, and overall dental health deteriorates. Saliva contains an enzyme that helps digest food, keeps the mouth moist, and eases swallowing, and it contains antimicrobial and antifungal agents. It is easy to see why we need saliva to stay healthy. In addition, we all know that having a dry mouth is a miserable feeling.
We who have had either chemotherapy and/or radiation, may precipitate these natural "old age" symptoms and our salivary glands might not work as well as they used to, if at all. The amount of damage depends on the type and quantity of chemotherapy or radiation and the fields included in radiation. Some medications, such as antihistamines, will reduce the flow of saliva so we should be careful how many and how often we take these.
We all know about humidifiers, dampened stoma covers, and irrigation, so, what else can we do to help the situation?
If someone told you about a product that is calorie-free, would keep your skin in a healthy condition, lower your risk of urinary cancers and perhaps colon cancer, hydrate your tissues, prevent kidney stones and, very important to laryngectomees, thin mucous and saliva, you would say, "I want some of that medicine. I don't care what it costs!" That medicine comes right out of your water tap and the cost, even if you prefer to buy bottled water, is one of the cheapest "medicines" around. Feeling tired? You may be dehydrated. Have a few glasses of water! If you wait for thirst, you may have already started to dehydrate.
The problem here is that hardly any of us drink enough water and the only way we can know for sure is to measure. Take a favorite glass and a measuring cup. Don't cheat. Fill the glass 'appropriately' and, pour it into the measuring cup to note how much it takes to fill it to that level. Then it will be easy to calculate how much you are drinking daily. Juice glasses are usually 4 to 6 oz. Tea and water glasses are probably 10oz or 12oz. How many of these do you need? For years we have heard that we should drink 8 glasses of water a day and they are talking about 8 oz glasses. That's 64 ounces or ½ gallon and doesn't sound so bad if you get to count coffee, tea, and colas, but you can't count that way. These other drinks are dehydrating so you have to drink more to come out even. Count these drink as about 2/3's of actual liquid content. A 6oz cup of tea would count as 4oz. Any noncaffeinated beverage counts as water. Foods have water content, but not enough to add much to your list. To make it even worse, Mayo Health says to divide your body weight by half and that's how many ounces you really need each day. That means the ½ gallon would only be enough if you weighed 128 pounds! So, if you weigh 200 pounds, drink 100oz of water a day. Think how important it is to a laryngectomee that water carries oxygen to your cells and helps to thin mucous.
Keep a jug in the refrigerator, carry a bottle around with you, and keep a glass at the kitchen sink. Drink a glass as soon as you get up in the morning and drink water with your meals. Swig a little extra when you take your medicines, especially vitamins, which need water to dissolve and be accessible to your body. Flavor it with lemon or lime or make a juice spritzer with carbonated water. Substitute some Gatorade but no more than a glass or two a day. It was meant for drinking after heavy exercise.
Any moisture that you can put "in", "on", or "around" your body will help to moisturize. Use your humidifier, dampen your stoma bib, hold your hot drink up so you are breathing in some of the rising steam, carry the water glass or bottle around with you and sip often. Water is an excellent expectorant and it may be that water alone is the medicine you need for thinning mucous.
There is a medication, an expectorant called guaifenesin, for thinning mucous. It has been approved by the FDA for almost 50 years and is sold both over the counter and by prescription for stronger dosages. It reduces the thickness and stickiness of mucous but must be taken with a full glass of water for it to be most effective.
You will have to read labels of cough syrups, but the one that has just guaifenesin is called Tussin or Robitussin Plain and is 100 mg per teaspoonful. Your doctor might have prescribed this for you, when you were having respiratory problems, under the name Humibid (600mg sustained release tablets usually prescribed 2 tablets in the morning and two at night) or under the generic name G-Bid. If you have trouble swallowing tablets, you might talk with your doctor about Humibid capsules (300mg) that are often called Sprinkles, because you can open the capsules and sprinkle these on your food or in liquid.
WHAT ON EARTH HAPPENED TO MY THYROID GLAND?
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
KIDS ARE SO COOL!
My niece, Joy, who just turned 7 years old, was born after my surgery. She has attended our support group, been to a few CAL meetings and was there when the IAL met in San Francisco. Most of her friends have no idea I was ever any different. The subject never came up.
This year, she invited some little girls, that I had never met, to her birthday party. I went by to give her a present and to say, “Hi” to the others and then I left on a short trip.
One of the mothers heard a new girl ask about the hole in my throat. Joy asked her if she didn’t have an aunt with one and the answer was, “No”. So Joy asked about an uncle or grandparent. Again, the answer was, “No”. The little girls that knew me looked at the ones who didn’t and said, with pity, “Wow, that’s just terrible.”
Deborah Austin firstname.lastname@example.org
Q & A online
What is the difference in a hemilaryngectomy and a partial laryngectomy?
A hemilaryngectomy is a type of partial laryngectomy, but there are other types. A hemilaryngectomy involves removal of one vocal cord. It is sometimes referred to as a vertical laryngectomy.
The other most common partial laryngectomy is a supraglottic (horizontal) laryngectomy, where the tissues above the vocal cords (epiglottis and false vocal cords are removed. There are several other partial or near-total procedures, which are too numerous to mention and are typically named after the exact structures that are removed, or the surgeon who developed the technique.
Candidacy for all of these depend on the exact location and size of the tumor, as well as the surgeon’s skill/knowledge ion performing them. Criteria for success is:
2) good airway with no need for a tracheostomy tube;
3) ability to swallow;
4) ability to speak.
Carla DeLassus Gress, ScD, CCC-Slp
UCSF Voice Center
San Francisco, CA 94143-1703
I knew I wanted TEP speech as soon as I telephoned Pat Morgan. She was and is the president of my local laryngectomee support group, and I had obtained her name from the website of the International Association of Laryngectomees. “This is not the end of the world” was among the most important messages I received as a soon-to-be laryngectomee, and certainly among the most important actions I took was to get in touch with my local support group. I needed to hear a recovered lary speak well to prove to me it was possible. And Pat, who had been a TEP pioneer with Dr. Blom in Indiana in the 1970s, has an excellent voice. She gave me something I desperately needed. What she gave me is referred to by a word many larys have a problem pronouncing since it starts with an “h” . . . hope. I needed hope that I would not only survive, but also speak again.
I was scheduled to have the tracheal-esophageal puncture procedure three months after the laryngectomy. On my pre-op visit, and seemingly as an afterthought, the ENT did an insufflation test. He pumped air into my esophagus looking for a segment which would vibrate. He didn’t get the intended result, but said not to be concerned about it. Two days later the procedure was done on an out-patient basis, and a red catheter was inserted in the puncture.
The next day was long in coming and anxiously awaited. My ENT installed a duckbill prosthesis and I covered my stoma with my thumb. Nothing. No sound at all. He removed it, verified that it was functional, and then tried a longer size. Nothing. I was trying as hard as I could to move air through it. He occluded (or covered) my stoma himself and tried a Bivona Ultra Low Resistance prosthesis. Nothing.
He then mechanically injected air through the prosthesis, but it went down instead of up. My stomach felt like an over-inflated balloon. What little air moved through the prosthesis and upwards caused heavy salivation and what felt like a gag reflex. Getting nowhere, he asked me to return in a few days because he wanted to confer with some more experienced colleagues. I spent the rest of the day belching and using that to speak. But no air moved through the prosthesis, and the belches arrived on their own schedule and not under control.
The following week he tried to get me to voice without a prosthesis, the insufflation test was repeated, and he tried other prostheses. At some point he said, “You are my first failure with TEP.” But neither of us was ready to quit. He referred me again to Dr. Peters in Birmingham.
By this time I had become familiar with a number of Internet resources for laryngectomees. One was WebWhispers, an online support group. I quickly learned to use these resources to educate myself and, perhaps more importantly, to reach out since another important message for every laryngectomee is, “You are not alone.”
From these sites I obtained the names of otolaryngologists and speech-language pathologists who had agreed to respond to problem cases. I put my case history together and sent it out in an e-mail. I was astounded with the number of responses from these prominent professionals. Almost all suggested that my symptoms were consistent with pharyngeoesophageal spasm, spasm of the PE segment, or hypertonicity. You might visualize this as a cramp in the section of the esophagus which needs to vibrate in order to speak, or too much resistance to air moving through the prosthesis and upwards. Another possibility which needed to be ruled out was a stricture, or the narrowing of the esophagus which occurs in some laryngectomees.
I returned for a barium swallow exam. In it, a liquid is swallowed which shows up on a kind of x-ray machine, a fluoroscope. Neither this test nor a visual exam under anesthesia explained why I wasn’t getting voice. Two weeks later I was back again. I did not know it, but I was about to be a pioneer -- at least in Alabama. I was about to be the second person in Alabama injected with Botox for hypertonicity, and the first went in just a few minutes before I did. Botox is a weakened and diluted form of botulism toxin and is the same poison which comes from potentially deadly food poisoning. It relaxes muscles in spasm.
When my turn came, I lay on the table as they probed with an instrument to locate muscle, and then I was injected in three sites in my throat. As the Botox went in I closed my eyes and I asked my mother, who had passed away more than a year before, to help me if she could.
Botox does not take effect immediately, so I returned two days later. Nothing. Barry, the other Botox patient, had been successful and had obtained TEP voice. A myotomy, an operation where the muscles surrounding the esophagus are cut, was scheduled as my last surgical/medical option to obtain TEP speech. “I gave you a good myotomy”, Dr. Peters said afterwards. Of this I had no doubt. But there was no noticeable improvement.
I was about out of options. The SLP in Birmingham said, “We don’t know what else to do.” To me this sounded like “We give up, and perhaps you should too.” Pat Morgan suggested that I go to see Dr. Blom in Indianapolis, but I was saving that as my last resort. My feeling was that after I saw Dr. Blom and if that did not work, then that was the end of the line. I had one more thing to try before that.
I applied to be a guinea pig at the Voice Institute as part of the IAL convention in Reno. I received a scholarship from the Batten Scholarship Fund which paid my registration fee and hotel bill. I couldn’t really afford the plane ticket, but I had to go. I am the kind of person who must be able to tell myself that I did everything I knew how to do. I felt that TEP speech was the only way to guarantee that I was going to be allowed to continue to teach. I was running out of options.
SLPs Dan Kelly and Carla Gress had responded via email to my request for ideas. Both had suggested that my problem probably involved hypertonicity which should have been cured by the Botox or myotomy. In Reno I told them of the problems I had in getting TEP voice and they suggested that one of my problems was that my prosthesis was probably too long. It was hard for me to believe, but Dan got a shorter prosthesis from the Inhealth representative and showed up with Carla at my hotel room door. To me, this was incredible. Here were two of the most prominent SLPs in the country who were volunteering to help me for free. A question kept going through my mind, “What would you be willing to pay for this?” The answer kept coming back, “If you had to pay what it is worth, you couldn’t afford it.”
“Say Ahhhhhhh. Relax. You are trying too hard.” Finally, I got a sound out. “Lower the pitch. Give me a deeper tone. Now reduce the amount of pressure you are using . . . still less. See how little pressure you can use and still keep the sound going.” Relaxing was a very difficult thing to do and, when I became tense, the voice would falter and cut out. Finally, I found a mental image which would keep me relaxed. I looked Carla in the eyes, half closed my eyelids, and imagined I was saying to her “I love you, baby”, as I continued voicing the “ahhhhhh.” I wonder today if she noticed my “bedroom eyes?” But it worked.
For the first time I believed I would get TEP voice. Before, I had hoped for it and was determined to try. But now I knew it would happen even if it would be difficult.
When I returned home I applied for and received speech therapy as part of a vocational rehabilitation program run through the Easter Seals organization. The program is designed to help individuals obtain skills necessary to get a job, or to keep one they already have. I made good progress as I continued to teach with a combination of the Servox and TEP.
I continue to work on my TEP voice and often forget and leave the Servox at home. Relaxing and not pushing too hard in an attempt to speak more loudly is still difficult.
To whom do I owe thanks? There are so many. If I begin to list them, surely I would inadvertently leave a name out. How do you say thank you for the gift of speech? What words could describe my gratitude?
But there are many ways to say “thank you” in addition to spoken words. A most powerful one is to help those who come after us. I needed hope and help. I got both. Now it is my turn to do what I can to help others as they make this healing journey. And you already know one specific way I do this I teach. It is what I do. It is what I am.
Four Generations of Laryngectomees
by Frances Stack, MA,CCC ret. Voiceless1@aol.com
Imagine, if you will, being a witness to the progress from no speech at all to ES, then AL, then TEP! This is the fourth generation of laryngectomees in my time.
The first generation was no speech at all. Before antibiotics, laryngectomees did not survive, if they did, there were all kinds of weird instruments that people used to try to talk again. I remember when I was about sixteen years old, seeing an old gentleman using a pipe with a vibrator in it Of course, at the time, I never dreamed I would join his world.
The second generation was where I came in. Esophageal speech or no speech! The location of the tumor and skill of the surgeon determined whether the patient would produce esophageal voice. Then who knew how to teach it? There weren’t many professionals who were knowledgeable about it. The artificial voice instruments at that time were cumbersome and sounded awful and both doctors and speech therapists discouraged the use of these instruments. They were convinced that every laryngectomee could develop esophageal voice, regardless of how much effort it took or how it sounded, which was certainly not true! A few, a very few, would be able to produce voice shortly after the surgery but I contend that the location of the tumor and skill of the surgeon were responsible along with the age of the patient.
The third generation, AL or instrument voice. When I was in graduate school in 1975, I was supposed to give a talk to the class about laryngectomees and voice. I brought a Western Electric instrument intending to demonstrate it. When the instructor saw the instrument, she got up and dismissed the class before I had a chance to say a word. Obviously, she was very biased against instruments. I was very angry but I couldn’t challenge her because I could see my degree going out the window if I did. She taught esophageal voice and the people sounded so horrible, gulping, clunking and grimacing that they certainly would have been better off with an instrument! The good ES speakers in my club would also make me angry when they would tell AL speakers to “throw that thing away and do what I’m doing”! They never realized how lucky they were and that the AL method was not a choice but a necessity. I guess some of this still goes on today.
About five years later, I was asked to be on a program for our state group in Champaign, IL, and the biased instructor was going to be there. She retired shortly after I finished Graduate school but I had prepared my lecture with her in mind. I made a video with four instrument users who extolled the virtues of their instruments and how having them changed their recovery period from one of despair to hope for a “normal” life.
I was told she was going to be late and would miss my presentation. I threw a fit and refused to speak until she was there! I had carried this ache in my heart for all this time and wanted to “show” her! When she came in, this little old shriveled up lady held out her arms to me and whispered, “Oh, Frances, how little we knew back then”. The ache disappeared along with any anger and I melted.
Then the fourth generation and the TEP came into being. I remember Eric Blom begging for subjects in Bloomington, where he was a guest of our state group. He needed twenty TEP laryngectomees so he and Mark Singer could present this procedure to the medical community. I sent him one fellow who was a real character but, unfortunately, this man did not do well with the procedure. We must remember that not every one is a candidate.
By this time, I was a guest lecturer at Mayo Clinic and Bob Keith, Clinic Director, let me insert a prosthesis in a patient. This was a first for me and I was excited and elated!
Using lung power instead of esophageal power makes a difference because it is more natural. After all, young kids can “burp” until they grow up and then our society tells us it’s rude. What amazes me is that there are so few ES teachers left. TEP speech, when it works is certainly so much easier.
In reading four years of HeadLines, the concerns and pain haven’t changed. The fears, anger and turmoil are still the same. I read the bound copy that I just received, then read it again. In some instances, it was déjà vu. It made me laugh and cry. Because the elation, happiness, and desire to be a better person doing for others are also still the same.
Q. Dr. Peters, there was a big discussion recently in our WebWhispers online group about using ointments inside or around the stoma. What do you recommend in the use of antibiotic or antibacterial ointments?
A. That’s a very interesting question. I think that if the stoma has “matured” or completely healed that nothing is needed. If a raw area develops from say using your speech prosthesis then a short course of an antibacterial is indicated until the area heals. I would not recommend a routine daily use of such products when nothing is wrong with the stoma.
I can think of three reasons that routine use should be discouraged. The first thing that comes to mind is that most antibiotic ointments have a petrolatum (i.e. petroleum) base. If a big “glop” of that stuff gets aspirated and finds its way into the lungs then a lung abscess could result. The second has to do with the fact that the main function of having petrolatum in a medicine is that it makes a seal on the surface. That is why we use it on a fresh wound, 'cause it seals the bad guys out. The other thing it does though is to seal moisture and any surface bacteria IN as well. This will create a situation that is chronically "wet" and actually damage normal skin. The last thing has to do with resistant bacteria. When bacteria are chronically exposed to an antibiotic they mutate in such a fashion that they become immune or resistant to that drug. That is why antibiotics should always be used sparingly and only when truly indicated. The classic example of this is the horrible practice of prescribing antibiotics to treat a cold which is generally caused by a virus.
So, when you have to use an antibacterial medication to treat an area of irritation around your stoma, use it sparingly and use a water soluble CREAM that won’t risk damaging the lungs.
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
HELPFUL EQUIPMENT FOR LARYS
There are many suppliers selling different brands of the types of equipment mentioned here. Do some research to be sure what kind you want, and if the one you really want costs a few dollars extra, it is worth it since this equipment lasts for years and can make life easier for you on a daily basis.
At our last meeting, we displayed some of the equipment we use that helps us to be comfortable with some everyday problems. Charles brought a small humidifier and a portable suction machine. I brought some amplifiers and telephones and Scotty brought a new flashlight. We have had requests for information on how they work, where to buy them and what they cost.
SUCTION MACHINE (Charles Lamar)
A brief recap of my previous story, which I wrote for the February, 2000 issue of HeadLines: On Christmas Day, 1999 while my wife and I were visiting our daughter and family, I experienced difficulty in breathing. I irrigated the stoma, no help, and the breathing became more difficult. Got my wife and son-in-law to take me to the local Hospital. We called before we left the house and when we arrived, my breathing became much more difficult. Having called before we got there certainly helped with the admission process. I was immediately admitted to the ER, seen by a doctor and treatment started.
Having worked in a hospital for some 30+ years, I was really impressed by the doctor and the respiratory therapist. A chest x-ray, two breathing treatments and I was breathing rather freely. No more problems that night and we came home to Tuscaloosa on Sunday. I had two more spells of having to get help before I was able to see a local ENT on Tuesday and at that time, he ordered a suction machine and a nebulizer with medicine. I visited the local medical equipment dealer and got the suction machine and nebulizer but the medicine had to be ordered and it arrived the next day. After several days of treatment and suctioning mucus, I returned to normal in my breathing.
I kept the suction machine for another month or so and then turned it in. I still have the nebulizer, which is being paid for by Medicare. Knowing that I travel and not wanting to go through this again, I inquired if there was a portable machine, which I could purchase to take with me. Through the local manager of American Homepatient Company I was able to purchase a portable machine that works off of a battery, has a connection which can be plugged in the cigarette lighter in your car or can be used with a converter to a 110 volt electrical outlet. I have not attempted to learn if I could be reimbursed by Medicare for the machine.
(If you are in Alabama and are interested in purchasing one of these machine, contact Glenn Bonnet, Manager, Tuscaloosa, American Homepatient Store, phone number 1-205-349-1204. Do not speak to anyone else other than Glenn and you can order this for the same price I paid $345.00 and some change. This is less that this same unit can be purchased from other Medical Supply Companies that I checked.)
TELEPHONES (Pat Sanders)
Last Christmas I received the gift of a portable telephone with a headset that plugs into it. It can be used with or without the headset. You will find a similar one in other brands wherever telephones are sold. I’m very pleased with mine and will give you the description and pricing.
GE Digital Spread Spectrum 900MHz Cordless Telephone, # 2-913SST
The telephone has a handset with beltclip and attachable headset
This one is cheaper now by about $30 than it was: GE 2913SST $89.99 and can be purchased by telephone at 800-221-8180 or online at http://WWW.JANDR.COM/
click on Home Office and then under the category, click on Telephones, and then Portable. They have a number of brands at different prices and I have ordered from them before with good results.
Look in the stores, ads or catalogs at any of the portables and be sure they have the headset as an accessory. Sometimes one comes with it and sometimes you can buy it separately, but the telephone must have a place to plug in the headset.. They are advertised all the time and they are wonderful for us. Clip the phone on the belt and wear the headset. Gives us a free hand that would have been holding the handset. We get sore shoulders when using one hand to voice and the other to hold a telephone receiver.
In addition to the portable telephone, I have a headset that plugs into a regular telephone and has a switch to change it back and forth from headset to handset. This one is next to my computer and the headset hangs on a ‘glue-on’ hook that I stuck on the side of the computer. I purchased this one right after my surgery (5 years ago) from Radio Shack.
I also have from Radio Shack (I was lucky enough to find this one at a garage sale) a headset telephone that has a base with the number pad but no handset. It is plugged into the wall instead of being a portable but the base will clip on your belt so if you have a long cord, it moves around the room with you.
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
Is that Kojak? G. Gordon Liddy? Or is it Robocop?
By Scott Bachman Tepfuzz@aol.com
I have been a police officer since 1983, and chose this profession because it was so easy to figure out what to wear on a daily basis. As long as I had a clean pair of socks, the rest was easy. I have been called Kojak but I think I look more like G. Gordon Liddy. Anytime I go into a Seven-Eleven someone invariably asks me if I know who I look like! I suggest that "he" is out in the limo if they really want to meet him.
In 1986, I left a department in Pennsylvania when I was hired by the Baltimore County Police and I have been stationed at the White Marsh Precinct, in various capacities, for my entire career. I am assigned to a uniformed unit which handles crime and community complaints, as they develop, and to maintain enforcement, and crime prevention in areas where we may have already been.
I started the new school year in a recently created position as a School Resource Officer at Overlea High School, one of our county's 24 high schools. We had 2 officers in a pilot program for two years at two high schools, and now we are in 10 high schools. Our particular precinct has three high schools with over 5000 kids. This fall, all high schools here will have a SRO. My peers want no part of being a SRO. Too Dangerous? Too Hectic? Those of us who made it through the initial selection process attended a 40 hour course taught by NASRO. We received a great 2 day training from Street Law on pertinent issues in today's society, and how they relate to students. In April, SROs completed a superb 2 day seminar, "Bombs, Bomb Threats, and Booby Traps" put on by Ralph Williams and his Explosive Device Technologies organization. I learned two important aspects, or shall we say, had them drilled into my head. One, "don't touch anything", and two, I don't want to be "DRT" (dead right there). I also found time to be on the Board of Directors for our Fraternal Order of Police, Baltimore County Lodge #4, for two years. I am a member of our department's Critical Incident Support Team, which is called upon to assist in the emotional debriefing of police officers and civilians that have been involved in trauma related incidents. And, oh, yes, I am a laryngectomee. Life can provide many opportunities, that you didn't expect, to learn and promote positive issues to others.
I was diagnosed with squamous cell carcinoma of the larynx in May 1992, after having not been diagnosed properly for about a year prior to that. It was a moment when time stood still but fighting a disease is like any battle. You need a plan, and an army. I had a plan: survive. My army was lead by a surgeon who was not satisfied to do things the easy way, and coincidentally, her father had been a police officer too. The "troops" were the personnel of the Greater Baltimore Medical Center, and the staff of the Milton J. Dance Head and Neck Rehabilitation Center located there.
Things were not going well in the early part of September 1992, or at least it seemed that way. Forty-two sessions of maximum, pre-op radiation did nothing more than give me a good sunburn, and allow me to lose fifty pounds in less than three weeks. Of course, eating was the least of my worries once a gastrostomy tube was inserted. That would remain for a year. I did not need a Richard Simmons video to look thin! My surgeon made a decision which would in fact save my life. On November 5, 1992, I had a total laryngectomy, along with a radical neck dissection. There was a bit of "dark humor" only 2 hours into the prep surgery. Seems someone failed to have me sign the surgical consent form. Hello? It is to this day humorous with all who know me at GBMC (except the lawyers!). I dunno, I thought I was going in for a vasectomy! Seriously, I knew all was well when I woke up in the ICU and saw nurses (or were they angels?) all around the bed at 2:00 A.M. Being at a "loss for words" I decided not to ask anyone for a date!
My road back to better health, and the potential for full duty, had begun. I was made acutely aware that my career as a police officer was more than likely over but from the time I was diagnosed, I knew I would not let this disease take away all that I loved, including my job. My primary caretakers at GBMC were intrigued, if not uplifted, by my determination, and dedication to task. Yes, there would be quite a few complications, and another twenty-some medical procedures to ready myself for my return to full duty. I had gone back to work part-time only 2 months after my initial surgery. It was difficult for me, and emotional for my peers. My nickname quickly became "ROBOCOP" due to my use of an electrolarynx to speak. I would answer the phone at the station, and all too often they wanted to speak to "a real person". Some were rude, and cruel. Often in public, I would be stared at, even when I was with my sons. I was glad my boys were very young and couldn't understand how discouraged their father was during those moments. These days, both my sons tell anyone who will listen all about my surgery. Time does heal wounds, emotional, physical, and professional. In my life, the most important words, in order, are God, Daddy, and Police Officer. There are days when they all get mixed up, but I try to do what is right.
My attitude has been founded in a philosophy of "You can be or do anything. Never give up". My surgeon and speech pathologist were my best buddies. We never moved forward with a procedure unless all agreed. In January of 1995 I had another surgery which would pretty much decide my professional fate (and my singing career!). The procedure is known as a TracheoEsophageal Puncture, or TEP. It affords the opportunity for voice through a rather simple, non-mechanical, vibration of the esophagus and most people think I have a bad cold or laryngitis. My mother would be proud of me due to the fact that I no longer eat and talk at the same time.
My job was on the line in June of 1995, when I was officially notified that I was to be retired. The facts surrounding that situation is "old news" now. I went back on the street feeling like a "rookie" again after two very demanding physical exams, and quite a bit of trepidation. Years later, I am more mellow (NOT!), and satisfied about the challenge that was placed before me. Last October I received an award from the Baltimore County Commission on Disabilities. I was recognized as their Baltimore County Employee of the Year. Wow! Life is good. Heck, I don't feel disabled!
Perspective and perseverance are the key. As I reflect on every "cancer free" anniversary date, it is hard to explain what comes with that. As painful as it is to admit, all this has taken a toll. I am finally absolved of routine blood work and x-rays, and my six month oncological exams are actually "routine". I also am beginning to understand I need to slow down. My profession does have a way of "cheating" you out of a few good years of a healthy lifestyle, as well. My worst enemy now is stress, and too many pizzas!
I continue to do what I feel I am best at. Quite simply, it is surviving, and enhancing my life. I continue to assist in the counseling of cancer patients, as well as being a motivational speaker, on and off the job. That is a cool thing considering I "lost my voice".
I have a strong belief that our Lord would not have given me all this energy if there wasn't a reason to use it. Actually, I think my life is great right now. Giving one's time is often a more powerful contribution and commitment than any amount of money or goods
Thank you for listening, and may your life be blessed with the realization that there is always hope.
When do you know if radiation "worked"?
In general, XRT is like a sunburn: you don’t feel the effects until after you get home from the beach and you don’t get the full kill by radiation until a few weeks later. We frequently see “tumor” in radiated larynges a couple of weeks after radiation has ended. This is secretly discouraging to the doctor but a month later the tumor may be gone. For similar reasons, biopsies of tumor following radiation before 6 weeks has passed may reveal cancer cells but no one can predict if they are viable (able to grow and spread). Therefore, unless the tumor is LARGER, we avoid early biopsies.
Actually, we expect 95% of the patients that are destined to recur to do it within 2 years. The frequent exams may or may not help us detect that recurrence earlier while we can still affect the course of this disease.
Cancer anywhere in your body tries to rob you of your life and frequently robs you of your confidence. If you stop smoking and drinking, eat healthier and get some spiritual peace, you’ve done all you can do. Instead of worrying, try to enjoy life.
I find that a speaker phone is very handy when the other party might have a little trouble understanding me. My husband, Eric, is the “third party” to the conversation, hearing both ends and making the conversation less confusing by repeating my words to the other party when necessary. It keeps my hands free for writing notes and it works great when dealing with matters that I need to do myself but Eric can be there to make my point or thoughts clearly understood. I’m sure you are all familiar with that “dead silence” on the other end of the line after you have said something.....this eliminates that as there is a “naturally voiced” person hearing the conversation and able make it clear.
Ellen Heyniger email@example.com
This last weekend several friends and I had a garage sale. Trash and treasure. Things were going slow when an older gentleman came in and as he said "hello", his voice sounded like my TEP voice. I immediately started tracking him with my eyes; was he like me? Was this a new lary in town? His physiology was such that I could not see his neck and assumed he was wearing a hands free unit. As he shopped, other people stopped by, had questions or were friends that I engaged in conversation. A few minutes later, as the gentleman was leaving, he came over to where I was and said he was luckier than I . Went on to explain that he'd had a partial 20 years ago, no recurrence of cancer, just an impaired voice. Funny that he considered the sound of his voice to be impaired. I thought the sound of his impairment was my blessing… my treasure.
While my spelling is fairly decent and I have a pretty good eye for words, I did make the mistake early on of spelling mucus, that stuff we are all familiar with, as mucous, which is an adjective, as in, Mucous Membrane (a mucus-secreting membrane lining body cavities and canals connecting with the external air). Mucus, a noun, is the viscid watery secretion of the mucous membranes, that moistens and protects them.
I stumbled across the difference several years ago when I was looking for an exact meaning of mucus for an article I was writing, and did not change it in my usage because mucous seemed to be the more common spelling in use by everyone and, besides, it 'looked' right. Not to everyone, it seems, because I received a teasing note from a doctor friend on the Larynx-C email list. Seems he was a spelling champion in school and it has stuck with him. I answered his email that I love words and I know better than to mistreat them so I would immediately start spelling this correctly.
Thought I'd better explain my loss of the "o", because the next time I write about mucus, that "o" will be long gone! Editor
Bio….Terry G. Duga
I am a 50 year old attorney for the State of Indiana. My main interest is theater, primarily as a stage manager and as an actor. About eleven years ago, while stage managing and performing in "The Tempest", I had problems with my voice and I had to wear a microphone to be heard. The Doctor thought that my voice problem was caused by allergies and, eventually, the problem faded, then it would recur. Finally, after having these problems for about a year, I went to see an ENT. He found cancer on the vocal cord. I underwent a month of radiation, which seemed to take care of the problem.
About a year later problems with my voice recurred. A biopsy revealed that the cancer was back and that I would need a partial laryngectomy. I had this done at IU hospital in Indianapolis. After the operation, I went to Eric Blom for speech therapy (a friend, who was a physical therapist, had checked with her voice therapist contacts and they recommended Dr. Blom). I had been dissatisfied with the surgeon who performed the partial laryngectomy and a few months after the operation, I fired him and became a patient of Ronald Hamaker's. Dr. Blom works with Dr. Hamaker in Indianapolis.
Two years later, while stage managing a play, I noticed that I became seriously short of breath when walking the length of the theater. I went to see the doctor between weekend performances. He scoped me, found a tumor, and scraped enough of the tumor away to allow me to breath without a trach tube. A few weeks later, I had a total laryngectomy.
I use a Blom-Singer indwelling prosthesis because my puncture is difficult to see and access, and because I have a very active gag reflex that makes it difficult for me to worry about changing the prosthesis myself. I also use a silicon trach tube at night to keep the stoma open, and use nystatin to control yeast. I use the valve and hydro-filter for speaking. It took a few months to get used to cleaning around the stoma and applying the housing so that it wouldn't leak. It also took a while to learn to clean the mess. I have had very good success with the valve and filter.
I still practice law, and am in court frequently. While most of my hearings are short, I have been active with longer trials. When I need to be in court, I tape around the housing to give extra strength to the seal. I also continue stage managing community theater. I have an amplifier to help actors hear me and, when necessary, will use a helpers voice to get attention. For the first several years, Dr. Blom used me as an exhibit when he conducted classes for speech therapists to show them how to use the Blom-Singer equipment. I found that I learn something at every session.
Since my total laryngectomy five years ago, I have stage managed eight productions and worked as a crew member for 3 more. I haven't started acting again, but the bug is biting, and I may have to look for a play that I can read for. Duga1@webtv.net (Terry Duga)
Dr. Peters, when you perform a laryngectomy and cut the nerve that affects the trapezius, what problems can that cause for us later?
The nerve that you 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.
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.
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
Esophageal voice is produced when air, drawn down into the PE segment through the mouth and nose, is released. The esophagus acts as a reservoir of air for voice production. Proficient, sentence length esophageal speech requires time, good coordination and consistent practice.
Voice after Tracheoesophageal puncture (TEP) is produced when air, exhaled from the lungs, is diverted into the upper esophagus and passes through the PE segment. The air is shunted into the esophagus through a surgically created fistula, often called a puncture. The fistula is placed near the top of the back wall of the trachea into the anterior (front) wall of the esophagus, below the (PE) segment. This puncture is held open by a 1-way silicone valve called a prosthesis. The valve opens during speech to allow air into the PE segment. It remains closed at other times, to prevent food and liquid from entering the trachea. The prosthesis needs daily maintenance, which requires adequate vision, dexterity and the ability to do a little troubleshooting. Prostheses, even "indwelling" models, malfunction and require changing.
Katie Dietrich, M.S. CCC-SLP
Senior Speech Pathologist
The Milton J. Dance, Jr. Head and Neck Rehabilitation Center
Hello, Helloooo! Is anybody there? By Vance Redden
It was just recently that I found out about the availability of the loan closet offered through the WebWhispers organization and I immediately took advantage of it by borrowing an electrolarynx (Servox). Darlene, the wonderful lady in charge of the closet, sent me the box and when I opened it, it was one of the most exciting days of my life. I was gong to have the ability to speak again. The moment finally came. The mailman left and I almost ran upstairs to my bedroom and tore the box open. There it was. I eagerly read the instructions, and was ready to go.
I couldn’t find a spot on my neck to use. I was too sore, the operation being less than two weeks past. I found one spot high up on the right side of my neck, but after a few minutes the pain made me decide to look elsewhere. The cheek didn’t work at all. It was then that I noticed the mouth attachment. I figured out how to put it on and stuck it in my mouth. My first tentative words were, “Hello, how are you?” Eureka! Success! Fascinating! I was off to the races.
After almost four hours of practice, I could control myself no longer. I picked up the phone and called my wife at work. The following conversation ensued:
“Good afternoon, may I help you?”
“Hello, how are you?”
“What? Hello? Is anybody there?
“Hello, how are you?”
“Jerk,” she replied, and hung up the phone.
I was stunned. Well, what could I expect. She had no idea that I would be calling and that box did make me sound like a robot, so I pulled myself together, took my Servox in hand and hit redial.
“Good afternoon, may I help you?”
“Hello, how are you?”
“Hello, how are you?” Steam was beginning to come out of my ears.
“Vance! Is that you? Are you all right?”
“Of course I’m all right!”
“Oh my God, do you want me to come home?”
“Are you all right?”
“Oh dear God, do you want me to call 911?”
“NO! I screamed. The Servox buzzed.
“Let’s do it this way. If you want to say yes, tap once. For no, tap twice. Now, are you all right?”
“I looked contemplatively at the Servox in my hand and dutifully tapped it once against the phone.”
“Good,” she sounded relieved, “Do you need me to come home?”
“No,” I tapped twice.
“Good. I’ll see you later. I have to go.” She hung up the phone.
I placed the phone on the receiver and looked thoughtfully at the Servox. Hundreds of dollars worth of equipment and technology brought down to the level of tapping yes and no. I felt humiliated. This would never happen again. I would send the damn thing back and just wait for the TEP procedure. That was supposed to let you talk more normally, or so I had heard.
I don’t know how long I sat there, but finally the self pity began to be replaced with anger and determination. I picked up the Servox, stuck the thing back into my mouth and began to practice slowly. Shortly, I picked up the phone and dialed a different number. The voice came on the line:
“Hello, this is Rhonda, may I help you?”
“Hello, how are you?”
“Hello? Hello? Is anybody there?”
“Hello Rhonda, I love you.”
“Dad! Is that you? It is, isn’t it. Did you just say I love you?”
“Yes I did.”
“Oh Dad,” she blurted, “I love you too. You can talk. You just need to practice a little bit. I’ll call you when I get home, OK?
“Bye now. I love you, Dad.”
“Bye, bye,” I buzzed, and I felt the tears roll down my face.
"Vance Redden" firstname.lastname@example.org - Laryngectomee since August 29, 2000
Stan Hesley (SilentStan@aol.com) sent an email recently with a comment: "In the last HeadLines, you used the phrase, "laryngectomee trainee". What is that? I just don't understand how someone trains to become a laryngectomee.
Answer: That comes from the Voice Institute, where they state, "You may attend the Voice Institute as a Laryngectomee Pupil or as a Laryngectomee Trainee. (Laryngectomee Trainees must be well rehabilitated with a good voice and at least two years post-op)." It refers to a laryngectomee who attends the VI and studies with the SLPs, even taking the same test. Perhaps there could be a better word or phrase for that. Anyone have suggestions?
Congratulations!! You’ve had laryngectomy surgery and have enjoyed a comfortable and uneventful recovery. You have pretty well mastered the use of your electrolarynx and you’re making steady progress in learning esophageal speech. Everything is really progressing well. Your family and friends have accepted your changed voice and your relationships with them have not been affected.
You have returned to work on a part time basis and fill in the balance of your days by giving talks to schoolchildren on the hazards of using tobacco and helping out new laryngectomees whenever and however you can. You’ve really got things under control --- or have you??
You always enjoyed an occasional alcoholic beverage and never had a problem with excessive drinking. So now you’re forced to ask yourself, “When did it happen?? How did it happen?? Why did it happen??”. The questions all relate to that one day, maybe as long as several years after your surgery, when you suddenly find yourself drinking in a manner you never expected.
It started gradually – first the mixed drinks became a little stronger than usual, then you started drinking earlier in the day, then you noticed that your weekly alcohol consumption almost equaled the milk consumption of your teenage son. You realize that your wife and family would surely be upset if they realized how much you were drinking so now you look forward to the house being empty so you don’t have to be quite as sneaky. It has become common practice for you to drink “around the clock”.
You’re really having a good time, right?? WRONG!! If you stop and take inventory of your life, the only one you’re fooling is yourself. Your family and friends can smell the alcohol ten feet away, your health has started to slip, you’re losing weight, you have little appetite for anything except booze. Gee, aren’t these symptoms familiar?? Isn’t this about the way you felt just before your cancer diagnosis?? I would feel safe in saying the symptoms are pretty close.
We laryngectomees must bear in mind that while tobacco use is the main cause of our cancer, it is not alone. Medical studies have proven that alcohol use is a significant contributing factor. Does this mean that if you continue to drink after surgery that the cancer will recur?? Not necessarily, but there are so many other detrimental side effects to drinking that it should be at the top of the list of “NO-NOs” for laryngectomees.
The point is that while we may experience an uneventful and perhaps, even a fulfilling recovery, we can slip into an alcohol problem without being aware of it. Some of us may develop a form of Delayed Stress Syndrome in that it takes a lengthy period of time before we realize that a major change has taken place in our lives. We start to feel sorry for ourselves and we may not even be aware of it. Of course, some of us fall into self-pity from the day we come out of surgery. But the specific reason is really immaterial. What is important is that that alcohol, be it beer, whisky, mixed drinks or wine, has absolutely no beneficial purpose. As we may have told other people about tobacco – the easiest way to break the habit is to never start.
By now you’re asking yourself who is this “Know It All” writer who is telling me what to do with my life. The name doesn’t matter. I have been a laryngectomee for sometime now and I have a drinking problem. I’m working very hard to beat it and I like to think I'm succeeding. If telling my story can help one or two people, then the effort becomes worthwhile. Please try to remember what I temporarily forgot - becoming a laryngectomee gave us all a second lease on life – why screw it up with booze. If you need to talk, you can reach me, Stan Mruk, at SMruk454@aol.com
Yeast, My Experience Max Hoyt <email@example.com>
“From the day when Dr. Blom introduced me to the TEP voice prosthesis, he also introduced me to the now famous nemesis, yeast. He showed it to me on a prosthesis he had in his office and I vowed at that time that I would never want to have anything like that. Within 6 months my prosthesis started to leak water and other fluids. I took the prosthesis out and was devastated when I saw little white bumps all over the esophagus side of it. It couldn’t happen to me.
As I remember, I called Dr. Blom and after telling him what was happening, he wrote a prescription for me. It was for Nystatin and had very specific instructions. Although I found it a pain to follow those instructions, I did so for several months. Then I went to my ENT surgeon for a routine checkup and announced to him what I was doing to control the yeast problem. He was emphatic that I was not to continue taking Nystatin. He was opposed to long term usage of that medication. That sat me back on my heels a little.
My travels as a Laryngectomee found me in Cherry Hill, Pa attending an IAL meeting. It was here that I first heard of the use of Clorox. I remember clearly the caution about using Clorox i.e. to thoroughly rinse the spare before inserting it in the tissue. For about the next two years, I alternated prosthesis and didn’t have any yeast problem. I wasn’t out of the woods yet however as I was finding my prosthesis getting soft very rapidly and would leak after a very short time.
About this time along came the WebWhispers into my life. Sure enough yeast control became the subject matter very soon after signing onto the system. Someone brought up the discussion of the possible long term effects of Clorox. By then, I believed that the prosthesis absorbed enough of the Clorox to inhibit yeast. There seemed to be some thought about Clorox having long term deleterious effect on the tissue in the punch.
I came back and asked the question to the WW if there was anything other than Nystatin and Clorox that worked on yeast. It seemed to me that it would be better to control the yeast in my body than try to control it on the prosthesis. This is when Pat came to my rescue and suggested I try eating yogurt with Acidophilus. I went to the grocery store and bought 12 containers of yogurt. I started to eat and gag. I couldn’t get the yogurt down. I, like most Laryngectomees, have diminished taste and smell but that didn’t help me enough. I could taste and smell the yogurt and it wasn’t good.
Others on the WW picked up on my problem and started to offer suggestions. I was directed to a health food store and told to look for Acidophilus Capsules. This I found and bought what I thought sounded like a real potent dose, 5 million cells per capsule. I was also pointed to some sites on the internet that discussed the correlation of certain foods to yeast. I started to eat much less simple carbohydrates and more whole wheat. I drastically cut out eating sugar and sweets from any source. I also consciously started to ingest more fiber in my daily diet. For one year after being on this regime, I did not have a prosthesis lost to yeast.
Then I was switched to the Indwelling prosthesis. My SLP suggested that I should take Nystatin but agreed to wait and see if the other routine I was accustomed to would work. I am pleased to report that it did work for 4 months. I then had a very small bubble of yeast on the prosthesis flap and of course it leaked fluids. Since then I have increased my Acidophilus intake to 1.5 Billion cells per day. I am waiting to see what these results will be.
As of today, I am a believer in the Acidophilus and dietary means of controlling yeast. Other medical tests I have had, such as colonoscopy, support my belief that a better diet is helping other areas in my body. I am a firm believer in the sharing process that takes place on the WebWhispers as well at the IAL meetings. I need a lot of people to tell me the same thing before it sinks in.
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Learning from a child CharlesLamar firstname.lastname@example.org
My wife and I have just returned from a five day "child sitting" stint with our twenty-two month old granddaughter, who lives in Florence, Al , some two and a half hours away from our home. We had not seen her in a month.
What does a child sitting stint have to do with Laryngectomees? Well, both of us were amazed at the changes which have occurred during this past month. We could understand many more of her words; she was responding to comments by PawPaw and Gran; she was much more stable on her feet (she was a late walker) and she ate her meals much better. This was, to us, an amazing improvement in just some 30 days.
Looking back at my surgery in August of 1993 and the recovery process which was made in the same length of time, it is truly amazing what this body can do in the healing process. I guess the lesson from this is that we cannot hurry the healing process, just as we cannot push the development process in a 22 month old. Time must be given for both to occur. The process which we must go through, learning to use an EL, having the TEP done, learning again to talk again, to change, to clean, to have the right size is, in my opinion, much like the developing process of a child in learning to walk, to talk and communicate, to eat with a fork or spoon or to drink out of a glass.
Laryngectomee? Is that a new Religion? by Murray Allan
For me, this has been an experience which, in my wildest dreams, I would never have expected. I had never heard the word laryngectomee before, never mind having seen one, and I have observed many other things in my career in law enforcement. I’m a Canadian, eh, born in Winnipeg. We moved to the west coast (Victoria) in 1945 when my father got out of the army at war's end. I served in the Air Force for 22+ years with the Special Investigation Unit (USAF- OSI), 5 years in Germany and at various bases across Canada. After the Air Force I worked for ITT(NYC) as their security manager for the Canadian operations which were spread from coast to coast. After 15 years, I left and opened a private investigation company which is still active.
I did not have any other symptoms than hoarseness, had not smoked for 20 years, and had no reason to think of cancer. After the usual antibiotics, prednisone, and other medications, I was referred to a good ENT who did a biopsy. Results - vocal cord cancer. Treatment - radiation. Next treatment - total laryngectomy with a simultaneous puncture.
After the surgery and the recovery period, I was fortunate in adapting very well. With the aid of a TEP, I am able to communicate without any difficulty. I think I was destined to become a Lary because it simply does not bother me. I have rarely encountered difficulty with a non-laryngectomee and, when it is explained to them, it is never a problem. In fact, I have found that most people go out of their way to be helpful. I particularly enjoy talking with medical personnel about this condition as many of them are barely aware of it and the fact that we are total neckbreathers. And, of course, we are instantly recognizable and never forgotten. That’s probably why I discarded my plans to rob a bank!
Becoming a Lary has made me think less about myself and more about others. I spend many hours visiting and calling pre and post- ops. I enjoy the feeling when I have assured some person who has awakened in recovery, speechless, and with a hole in the neck to breathe through, that all is not lost and that they will be voicing again soon. The gleam in their eyes is all the thanks that I need. I can feel their anguish and pain because I have been here and done that. I also believe that having good support from your family, a local support group, and/or the online group, WebWhispers, is absolutely essential in returning to a virtually normal life.
Because I am a Lary, I have had the opportunity to meet many fine individuals. I know a retired USAF jet fighter pilot, a MENSA member, a practicing and some retired attorneys, a retired IBM manager, a very successful realtor a sanitary engineer, a long-haul truckdriver, serving and retired police officers, a firefighter, a minister, a barber, a medical doctor, a hair stylist, a university professor, an electrical and chemical engineer, a mortician, and some folks on social assistance. That is the fascination of our group, we may have nothing in common but we are drawn together by a common bond - laryngeal cancer. In brief, I have had the opportunity to meet many great people from all walks of life because of my laryngectomy.
Prior to the cancer I was an active Red Cross blood donor (153). I miss being able to do that, but the thing I miss most is swimming. Singing is a close second; however, those that have heard me sing now are grateful that I use a TEP! I have found that I can continue to be active physically playing racquetball, cycling and walking. Naturally, I spend a lot of time at this computer. I am also busy at a shelter for homeless cats. I have a great fondness for animals. The cats find my voice a bit annoying but when I have a bag of chicken they don’t seem to care. One of these homeless cats, Rusty, decided I was his and he now resides with me and my wife, June. Those of you that know cats already realize that they do what they want in any case!
My motto is one day at a time and I now try to experience everything that I can because I realize that I have been given a second chance to live and that every moment is precious and important.
That Ole Devil Pineapple!
Egad! I pushed the envelope! I stepped right to the edge. I challenged death and spit in its face. Maybe I'd better start at the beginning. You see, for the last 36 days I've had this
tube stuck in my belly. It's is used for feeding purposes. Five times a day, I open a can of vanilla tasting goop, mix it with a little water, and inject it into the tube. The doctor tells me that I cannot even begin to think about swallowing anything until I receive an esophagram and he knows whether I am "leaking" or not. In fact, when he allowed me to go home from the hospital, he made me promise that I wouldn't attempt it. I agreed. And that brings us to the present crisis. Now, the doctor did say that I could rinse my mouth out with grape juice or something as long as I didn't swallow. This has been doing all right, but yesterday I came across the demon--- crushed pineapple. I opened the fridge and there it was. I stared at it for a few minutes then made the almost fatal mistake. I removed it from the fridge, brought it over to the sink, picked up a spoon and shoved it into my mouth. Just a couple of chews and spit it out. Nobody would ever know. It would never be missed. And then it happened. Somehow, seemingly of its own accord, the pineapple began to move to the rear of my mouth. I could feel the automatic swallow mechanism take over and I was within a second of committing suicide. With an almost inhuman effort, I stopped the swallow reflex and managed to spit out the demon pineapple.
So I live to see another day. When I realized I had beaten the odds, a calmness came over me. I picked up my newly acquired Servox, stuck the stick in my mouth, articulated perfectly, and advised my daughter, "Some people skydive for thrills. I chew crushed pineapple." "Wha'd he say?" asked my other daughter. "I think he has to go to the bathroom", she replied. (Vance Redden, email@example.com)
INTERNET SITES FOR LARYNGECTOMEES
Contains information on IAL membership with lists of member clubs, Voice Institute, Newsletters and Events.
· The International Association of Laryngectomees (IAL): its organization, officers, Board of Directors, and committees; its purposes, services and publications.
· Check out "What's New for Laryngectomees"
· The IAL's Annual Meetings and Voice Institutes
· Assistance in locating qualified Alaryngeal Speech Instructors/Therapists
· A worldwide listing of all current IAL-affiliated clubs and regional organizations
· The IAL News and other selected local newsletters of interest to laryngectomees
· Online forms to subscribe to the IAL News and to update/add club information
· A Directory of Distributors; products and services of interest to laryngectomees
· A Calendar of Events for laryngectomees and associated professionals
· A Library of laryngeal cancer information, inspirational articles and poems submitted by IAL members and an extensive list of "Laryngectomee FAQ's"
· Extensive links to other sites that deal with laryngectomy and larynx cancer issues, voice rehabilitation, and other useful laryngectomy-related resources.
· A Guide to Donations to the IAL; financial support and/or services.
· SEARCH this website for a subject/topic of your own choosing.
The National Association was inaugurated in 1976 with the sole objective of promoting the welfare, in any way possible, of laryngectomy patients and their families living throughout the British Isles and Eire. To this end NALC has concerned itself with various aspects of laryngectomy and thereby has grown to the National Charity it is today. Some of our activities: Proposed Development Plans, Clan - The Association Newsletter, UK & Eire Laryngectomee Clubs, Club News Letters, Speaking Again, Resources and Information available to laryngectomees and their families.
A monthly newsletter written for laryngectomees by laryngectomees, caregivers, and professionals with personal experiences and educational articles. HeadLines can be found on-line at two Internet sites:
IAL http://www.larynxlink.com under Newsletters
NALC http://www.laryngectomees.inuk.com/ under Letters From America
The WebWhispers Nu-Voice Club is the only IAL affiliated online support group and is the largest club in the IAL. It is available to it's 600+ members 24/7 through two email lists.
WEBWHISPERS MODERATED EMAIL LISTS
The purpose of both of the WebWhispers Email lists is the sharing of knowledge and experience among laryngectomees, caregivers, friends, and medical personnel. These are two separate and different lists- you may participate in either one or both but please read and heed the descriptions and rules for each before participating. Members are expected to comply with these guidelines.
The WebWhispers list has more relaxed rules than the WWHealthHelp list, although discussions on both should still relate to being, and learning to live as, a laryngectomee. Some of the appropriate topics would include such things as communication equipment, support groups, dealing with everyday problems, and discussions of International Association of Laryngectomees and WW issues. Questions and comments should be relevant to laryngectomee rehabilitation, support and assistance. NOTE: You may discuss medical problems on the WW list, but non-medical discussions will not be allowed on the WWHealthHelp list.
Explanation of terms, disease, symptoms and treatments; illustrations; over two dozen LINKS to: Otolaryngology Centers, healthcare providers, and sources of additional information and support.
Most of these suggestions have been submitted by laryngectomees in the hope of assisting "new" laryngectomees and making life a little easier for them. However, those with throat cancer who are or may be undergoing treatment will learn, also. In addition to the Helpful Hints specifically submitted by our members, we have also selected other topics from discussions held on our WebWhispers Email list.
Free Stuff for the Asking, Before Laryngectomy, Post-Laryngectomy, Stoma Care, Side Effects, Talking Again., Activities
A compilation of humorous anecdotes about life as a laryngectomee
RECIPES FOR LARYNGECTOMEES
A small collection of dietary hints and food recipes for laryngectomees
WEBWHISPERS MEMBER SERVICES
The Members Pages of the WebWhispers Nu-Voice Club. List of Members, Pictures, Bios, Archives, Club Notices, Bulletin Board, Remembrances, and our WebWhispers Journal, a monthly newsletter with news that pertains to WebWhispers and articles to keep us educated and "up to the minute".
The heart of ACOR is a large collection of cancer-related Internet resources and they host more than 100 listservs relating to cancer
HEAD AND NECK CANCERS ONLINE SUPPORT GROUP
THE LARYNX CANCER ONLINE SUPPORT GROUP
On the left side of the screen, click on any of these:
Symptoms and Diagnosis, Staging, Types of Head and Neck Cancer, New Treatments and Clinical Trials
Diseases & Conditions | Procedures & Tests | Medications | Medical Dictionary |
You need to join but there is no charge
Choose Diseases and then click on "L". Scroll down to Larynx Cancer to arrive
What is the larynx? What is cancer? What causes cancer of the larynx? What are symptoms? How is it diagnosed? What are treatment options? What are the side effects of treatment? What is involved in rehabilitation after surgery? What happens after treatment? What support is available? What resources are available to patients and their families?
General healthcare information and drug library
By using the word LARYNX in Search, you will have hundreds of documents relating to Larynx Cancer.
For the special section on Cancer of the Larynx http://search.nci.nih.gov/search97cgi/s97_cgi
The Larynx, What Is Cancer?, Symptoms, Diagnosis, Treatment Options, Getting a Second Opinion, Treatment Methods, Treatment Studies, Side Effects of Treatment, Radiation Therapy, Surgery, Chemotherapy, Effects of Treatment on Eating, Rehabilitation, Learning To Speak Again, Followup Care, Living With Cancer, Support for Cancer Patients, Cause and Prevention, Dictionary