HEADLINES
Pat Sanders, Editor
Kirklin Clinic Head & Neck Cancer Support Group, Birmingham, AL
distributed by American Cancer Society
February, 2002

Visitation – Four in a Row                                    by Murray Allan,  argus@shaw.ca

Up bright and early this morning and checking the email. Why do I keep getting these ads from people that want to increase the size of one of my body parts? Looked at WebWhispers and it's doing fine with all the mucus and stoma problems solved for another day. It’s Tuesday and almost time to play racquetball with my feisty Irish neighbor who always has to win. Sometimes I let him!

The phone is ringing and it’s my friendly SLP from Vancouver General Hospital. Would I look in on two new laryngectomees? Certainly, I’ll be down a quickly as I can.

I first visited "Thelma". What a lovely lady, 90 years young, and bright as a button. She had broken her hip and was to have her laryngectomy in a few days. We talked of many things and I gave her a pre-laryngectomy kit which I had put together with the help of Herb Simon and Pat Sanders. "Thelma" and her daughter were grateful for the visit because they knew that, after the surgery, she would be able to voice again with a prosthesis.

Next visit was with "Karl" who is 61 and unable to read or write. He had just never learned and he was the first illiterate laryngectomy I had ever met. He is a roofer and has great support from his wife, "Jean". The amazing thing about "Karl" is that he is only a week post-op and he is using oesophageal speech! I can understand him when he tells where he lives and his telephone number. Truly amazing. However, if you can’t read or write what’s a guy to do. It certainly shows how adaptable we humans can be, when required.

It’s Wednesday, early, and what’s this? Another call from a different SLP at a different hospital. Can I see "Linda" who is scheduled to have a laryngectomy plus a forearm free flap? You bet. I’ll be right down as soon as I feed Rusty, the big orange cat, who helps me at the computer. "Linda" is tall, thin and 60. She looks like she has led the good life and could pass for 70. But I’m not a judge nor an angel myself. When the SLP and I started the visit, "Linda" asked to see my stoma and I obliged. The first words that came out of her mouth (in a very low whisper) was, "How will I be able to kiss?" We all have our priorities, folks! I explained to "Linda" that, as a laryngectomee, she would be able to kiss 'til the cows come home! She was greatly relieved but still a very nervous lady with lots of good questions. She is now 5 days post-op and doing just fine and waiting for her first new Lary kiss!

Another call and back to the hospital to visit "Isabelle" who is one week post-op. What a sweet lady of 82, who had radiation two years ago but the Dragon came back with a vengeance so a laryngectomy was necessary! "Isabelle" was alone when I entered her room. I introduced myself and the tears welled in her eyes. I asked what was wrong? She wrote, "I was never so happy to hear anyone speak in my life. Now I know I can talk again". Being a guy I don’t cry - but I came very close to it this time. She is going home shortly to her loving family with a TEP and she will be chatting away like it never happened.

Whew!! This is a busy week and different in that there were 3 ladies out of the 4 visits. Usually there are more men than women.

People often say, "It’s so good of you to visit these people." Believe me, it benefits me 100 times more than it helps them. I’ve been there, done that, and unless you’re a laryngectomee yourself, despite all the degrees and training, no one can truly understand the feeling of utter helplessness of waking up with a hole in your throat and being speechless. It is an honor to be asked to visit and everyone that can should.

Stomach Gas and Acid Reflux in Laryngectomees

by Carla DeLassus Gress, ScD,  Email:   carlag@email.his.ucsf.edu

Two conditions which may develop or worsen following the removal of the larynx are increased stomach gas, which can produce uncomfortable pressure and belching; and an increase in stomach acid reflux, which causes the sensation of "heartburn" or acid taste, and may be severe enough to require medical attention. Patients who are fitted with the TEP prosthesis often develop more problems with stomach gas than those who use the artificial larynx for several reasons.

If you are able to look into the opening of the prosthesis while it is in place, sometimes you can see the valve opening inadvertently during quiet breathing. You may also be able to hear a "click" with each breath when the prosthesis valve opens and shuts. Small amounts of air may be entering the esophagus with each breath and move downward into the stomach, coming back up later as a belch. The solution to this problem is to go to a higher resistance prosthesis that isn’t as susceptible to the changing air pressures. Because of design differences, the Provox prosthesis does not cause this problem to the same degree as the standard InHealth and Bivona low pressure/low resistance prostheses and the InHealth Indwelling devices. A duckbill style prosthesis will frequently correct the problem, but the increased resistance of this design can be too great to get a very good voice for some individuals. The 20 French duckbill made by Bivona can in some instances provide a good balance, offering extra airflow for speech because of the larger diameter, but increased resistance of the valve to prevent inadvertent opening during quiet breathing. So, one approach to reducing air moving down into the stomach of laryngectomees who use the TEP prosthesis is changing the type of prosthesis.

Another problem that can cause stomach gas is related to the surgery itself and how the throat was reconstructed after the larynx was removed. Prior to surgery, there is a more or less concentric valve (sphincter) at the junction of the lower pharynx with the esophagus that helps to keep the entrance of the esophagus closed. The sphincter relaxes during the swallow to open the esophagus for the passage of food or liquid. The fact that it is ordinarily closed helps prevent stomach acid from gurgling back up into the esophagus and throat. If the surgery left this area without much of a protective sphincter then the laryngectomee may not only suffer from acid gurgling back up into the esophagus and throat (known as "gastroesophageal reflux disease" or GERD), but also swallow a considerable amount of air. Try eating slowly so as not to swallow so much air. The recommendations for diet modification, head of the bed elevation, etc., can alleviate mild gastric reflux. A chronic or severe acid reflux condition requires medications (prescription brand names include Prilosec, Prevacid) for effective control.

An additional problem can be related to almost the opposite extreme, where the reconstructed throat offers too much resistance to the air column moving upwards as it exits the prosthesis for speech production. As a consequence of the operation, scar tissue formation, or radiation, the pharynx or upper esophagus can be too narrow or constricted, in some cases to the extent that solid food is not easily swallowed. In some instances the muscles have too much tone (rigidity, tightness, or "hypertonicity"), or go into spasm (cramping). If there is increased tone or spasm, the voice is strained and requires extra effort, or there may be intermittent breaks in the voice where no sound comes out at all. As the air exits the prosthesis into the pharyngoesophagus, it can’t easily exit upwards through the mouth (because of the narrowed area or the hypertonicity) and instead moves down to the stomach. If the patient is pushing to make the TEP speech louder, it can exacerbate the problem. For this reason it is important to try to speak effortlessly and use gentle pressure of the finger for stoma occlusion. The pressure for occlusion should eliminate stoma air leakage around your finger or heat-and-moisture exchange device (InHealth Humidifilter, Provox stomafilter, StomVent), but not so tight that the entrance to the prosthesis is blocked or that the esophagus is kinked.

Determining the cause of the problem often takes some detective work. The sound of the voice can give some clues. If the voice is weak and breathy, almost a whisper, it may be related to a "loose throat". But if the voice sounds tight or strained or high pitched, it may be due to a "tight throat". Laryngectomees who are in the beginning stages of learning esophageal speech may also experience excess stomach gas and frequent belching as they learn to trap air and release it with the muscles of the throat. This is particularly true if the laryngectomee develops a "double pump" to initiate the intake of air into the esophagus. As speech proficiency develops, this problem decreases significantly. While excessive stomach gas and acid reflux are not uncommon conditions for many laryngectomees, help in addressing these problems is available from your physician and speech/language pathologist.

This article was originally published in the WebWhispers Journal.

http://webwhispers.org/news/nov99-3.htm

A couple of articles from 1996 HeadLines.

COMMUNICATION

Communication is a two way street and often we are expected to call out from another room or speak to someone’s back. We’ve always done this, but things have changed. We need face to face conversation. Our expression, a nod of the head or pointing may help to get a message across. When people turn their ear toward us, thinking to hear better, they lose the natural lip reading ability that we all have. Early on, my favorite expression became, "Look at me!". We have always communicated across the room with a nod of the head or a movement of the thumb in the direction of the door. Now, we need more of this personal sign language. In a crowded store or at a party, it helps us if our partner wears something bright, so that we can find them. Remember, we can’t call out as loudly as we used to.

Noise is a factor in our lives that needs to be controlled. We can no longer talk over televisions and radios, and we need to get in the habit of turning the volume down before we speak. The telephone presents special problems. Instead of immediately launching into what we wish to ask, we should start with a sentence that gives them a chance to realize that they need to pay special attention. At first, it is not out of line to ask, "Do you understand me?", and later, you might just say, "I need to get some information about.....", or "Would you be able to help me with....?" Speak slowly and distinctly. Once they get tuned in to your sound, you can be more natural.

Most of us tend to keep the buzzer going and it is much clearer to others if we phrase our sentences with breaks in the buzzing. Otherwise, we sound like a rambling paragraph without punctuation.

Why foods don’t taste the same                                                                  by Rick Rivenbark

At our recent throat cancer support group meeting, there was a discussion of the loss of or alteration in taste that everyone had experienced. While these changes were most profound in those with full laryngectomies, even those with partial laryngectomies or radiation/chemotherapy without surgery had noticed some difference. There are two reasons for this. The first is the big decrease in the sense of smell which happens to a person who breathes through a stoma. A major portion of what we experience as taste is actually a combination of taste and smell. When we are eating that freshly baked roll or sipping that morning coffee, our nose is busy inhaling the aroma just below it. Our "taste memory" includes that aroma as well. With no air coming in through the nose, there is a loss of the aroma component of that experience.

The second reason has to do with what happens to the taste buds on our tongues. Four different types of receptors, located in different parts of our tongues, provide the sensations of sweet, salty, sour, and bitter. The various combinations and strengths of these sensations make up the actual " taste" of things. When we have surgery, radiation, and/or chemotherapy in the head and neck area, our taste buds can be temporarily or permanently impaired or even destroyed. The damage may also affect some types of buds more than others, so that one person may not taste sweet as well while another may lose bitter sensations.

You’ll learn to season your food differently or to like different foods. Over a period of time, you either regain some of your lost taste sense or you adapt to more delicate tastes.