Internet Laryngectomee Support
The Lary is a Preacher
For whom would becoming a laryngectomee be the worst thing which could befall them in terms of carrying on with their previous lives? Are there any occupations people cannot perform after becoming laryngectomees?
Such questions have occurred to many laryngectomees over the years as we compared our own loss to that of others. It is a natural process as we seek to discover what to fill in the blank, "Well, things could have been worse, I could have been _____". Logically, our thoughts might go to people who earn their livings from their voices such as professional singers, preachers, teachers, telephone dispatchers, salesmen, auctioneers, etc.
But newsletters aimed at us such as the IAL News have enjoyed bringing stories to us over the years of individuals who have defied the odds and continued in almost all of these careers. So far, we have still not discovered any laryngectomee who was a professional singer and continued after the laryngectomy. But we certainly have discovered individuals who continued as professional performers including musicians and actors, as well as teachers, auctioneers, soldiers, pilots, and preachers. Two of our laryngectomee preacher members are William O. Willham and Tom Holcomb. This month we profile W.O.W.
William O. Willham, known to many by his initials W.O.W., had been a preacher for over three decades and was serving as Director of Missions for over 43 Baptist churches in central Kentucky when the problems which would lead him to becoming a laryngectomee emerged. For a non-smoker, WOW has had more than his share of bouts with cancer which are usually associated with tobacco use. He had his larynx removed at age 65 in 1993, but was back at work within three months, and back preaching within nine. A cancer recurrence then cost him his esophagus, and a piece of his colon was moved to replace it. Next he developed lung cancer and lost part of a lung. But as William says, “with every surgery the Lord has opened additional doors to witness and minister”.
William has served as the President of the central Kentucky "Lost Chord of the Bluegrass" club. He and his wife live in Danville, Kentucky. Regarding his communication, he says, “ I use the Servox EL and love it. The way my new swallowing tube is installed, I cannot use the TEP, but do not feel slighted in the least.” Regarding how he feels about talking he said, “Old preachers never die, they just talk themselves to death."
Proper Dilation of the Puncture
by Dr. Carla Gress, SLP
You can't park a Cadillac in a parking spot that is made for a Volkswagen...unless you are willing to accept some damage. Who would argue with that? But that's exactly what happens when people try to force a prosthesis into a puncture that is not sufficiently dilated.
Now, it's true that the puncture tissue will usually stretch a little, but for the easiest insertion, the puncture should be slightly larger than the prosthesis. And this requires dilation, and for an adequate amount of time. The problem is that we get in a hurry, especially inexperienced or uneducated medical professionals. Dilating a puncture is akin to producing a fine wine - it can't be rushed, and the schedule may vary from one individual to the next.
One problem in some laryngectomees is that the puncture may be located where fibrous scar tissue developed, either because it is on a suture line, or due to repeated traumatic prosthesis insertions. Or the other culprit can be a granulomatous tissue "donut" that forms around the puncture. These can require prolonged dilation to get the puncture of an adequate diameter to easily insert the prosthesis. I have one patient whom we routinely dilate to 24 Fr to get in a 20 Fr indwelling prosthesis. When I schedule him I know we are looking at a minimum of an hour.
Rotating prostheses will help, as will the use of a gel cap for the standard low pressures (if someone isn't already doing that), use of KY (or other water soluble) lubricant, and making certain that you are directing the prosthesis at the same angle as the puncture tract. The “chandelier” puncture (which is a vertical tract in the top of the stoma) is best handled with the patient lying flat and someone else inserting the device.
In some cases, there can be over-dilation or expansion of the puncture due to crusting or an accumulation of candida on the stem of the prosthesis, which essentially has increased the diameter of the device over time. I have seen this in several individuals, so don't discount it because it hasn't happened to you. Usually the scenario is that the patient has left the prosthesis in place for a long period of time, perhaps a year or more; and after it is removed the new one goes in without any need for dilation because the puncture is already dilated bigger than what is needed. The new one fits loosely, and on more than one occasion I've had patients return the next day because the new one dislodged.
In one case, the patient couldn't return for several days so after a phone call to me he put in a "white thing" (I assumed a dilator) for a few days until he could get back to the office. Well, the white thing was a pipe cleaner and he ended up with a nasty infection, although he did not lose the puncture. I'm smarter now, and when someone comes in who hasn't had the prosthesis changed for a long time, there is crusting on the stem which visibly increases the diameter of the prosthesis, and the new one fits loosely; the prosthesis is replaced with a smaller diameter catheter taped securely to the neck for a few days until the puncture downsizes. Better to sacrifice the voice for a few days than to risk dislodgement, closure of the puncture, and/or aspiration of the prosthesis.
If you change your own prostheses, rotate them every few days or according to the schedule that your clinician suggests, with one soaking in peroxide while you wear the other. And follow the directions for dilating your puncture. The appropriate sized catheter or dilator should slide easily before inserting the prosthesis. This is a very important step in properly inserting the prosthesis, and should be done with care in order to avoid problems.
Dr. Carla Gress can be contacted at: firstname.lastname@example.org
Swallowing Problems and the Shaker Exercise
There are a number of reasons why people develop swallowing problems. And even among head and neck cancer patients there can be a number of problems which cause difficulties in swallowing to develop. Since there are, there is no single approach to addressing them all.
However, there is one simple exercise which has proven beneficial in improving or even restoring swallowing function in some patients who thought they were destined to only receive nutrition by way of a surgically implanted tube in their sides.
Difficulty swallowing, which includes such symptoms as coughing and throat clearing during eating, as well as actual choking, affects one out of 17 Americans. As many as half of nursing home patients have the problem, and it is becoming a major part of the workload of many SLPs (speech-language pathologists), according to SLP, and laryngectomee, Joanne Fenn.
A simple exercise which shows promise and is undergoing further testing is called the "Shaker Exercise". It is named after its inventor, Reza Shaker, MD. The exercise has been reported in several medical journals over the past several years, but has not found its way into universal application at the patient level.
It turns out that the seemingly uncomplicated act of swallowing is actually quite complicated. It involves whole groups of muscles which open and close the sphincter muscle which is on top of the esophagus. Some laryngectomees lose part or even all of this muscle depending on the location of the cancer and the surgical technique used. For others, we develop spasms in those muscles which can make it difficult for us to speak using esophageal speech (traditional or TEP), as well as swallowing problems.
For someone who has lost the ability to swallow, restoring it is desirable if at all possible since tube feeding can lead to health problems such as malnutrition, additional reflux, and infection around the site where the tube enters the body. And, obviously, the deprivation of taste also lessens the patient's quality of life. If you experienced loss of taste following radiation or surgery, you might remember what it is like when everything tasted like Styrofoam or cardboard. Taste and the sensations of cold or warmth and differing textures in food is a pleasurable source of sensory input we miss.
So what is this mysterious exercise which can restore swallowing, at least in some people? Patients are simply required to lie on their backs and raise their heads until they can see their feet, but without lifting their shoulders. In the pilot study carried out by researchers at the Medical College of Wisconsin, the patients, including those whose swallowing problems were linked to radiation to the neck and surgery, performed the exercise three times a day for six weeks. The results were significant in the pilot group, and all patients returned to eating, at least to soft foods.
More extensive research is being carried out, and one of the benefits is that a better understanding is being developed of the complicated processes which allow us to swallow. Certainly the "Shaker Exercise" is not going to cure the swallowing problems of all, but it is nice to have a method developed which works for some which does not involve more surgery or pills.
(Based on information from a Medical College of Wisconsin news release, Gastroenterology, and the Journal of Rehabilitation Research and Development).
New Universal Telephone Relay Number
Beginning October 1, 2001, the three digit number 711 can be used as a shortcut to access all Telecommunications Relay Services (TRS). TRS facilitates telephone conversations between people who do and who do not have speech and hearing disabilities. All telecommunications carriers in the United States, including wireline, wireless and payphone providers must provide 711 service.
Rx for Doused ALs
by Tom Lennox
Since we manufacture and repair artificial larynges, I’d like to offer some practical advice about what to do if your artificial larynx is dropped into water, mud, spaghetti sauce, dishwater, the toilet, etc., etc.
Proper attention on your part may reduce damage and mean that you do not have to send your AL for repair. And even if you do have to send it away, your actions can help keep down the cost of repair or may leave you with an AL that is repairable instead of something that has to be thrown in the trash.
Whether or not your AL is under warranty or not, a quick phone call to the manufacturer can verify whether they agree with the procedures I describe. However, most warranties only cover defects in manufacture and not accidents. And, if the accident with your AL occurs at night, on the weekend, or when you are away from a telephone, prompt action may be required. If you drop your AL in the clambake pot on Friday night, you are probably on your own anyway. Some substances are particularly deadly on ALs, including cola drinks, and these definitely will not wait until Monday morning to flush out. Most of us are flexible with warranties and if it is not too expensive to fix we will often do it for reasons other than defects, or make a nominal charge.
(Ed. Note: Servox does have a comprehensive warranty available which covers accidents, but it costs extra except on new units purchased between now and December 31st. See page 18 of the September issue of the IAL News).
The main thing to think of is the fact that clean tap water does NOT damage an AL unless it is left to sit inside it for a period of time, and therefore in an emergency you can use plain tap water to rinse anything water soluble out of your AL. (Do NOT use detergents, oils, solvents or any cleaning material other than plain, clean water. The exception would be a removable safety cord. It would be OK to wash that part in soap or detergent and water. Rinse and dry it before reinserting into the AL.)
For a neck held device, immediately rinse the outside of the device in fresh tap water. Then remove the battery cap and remove the batteries. Rinse off the batteries and the battery cap, dry them with a towel, and set them aside.
If the device has an oral adapter, remove it and wash it as you would occasionally anyway. Make sure that there is no food or foreign material in the end of the tube or in the slots if you use a capped tube. Depending on what it’s been dropped into, you may very well want to discard the tube and put on a fresh one.
For instruments that have a removable head such as the JedCom, Nu-Vois, Optivox, Romet, Servox, TruTone, SolaTone, and even the old AT&T, simply remove the head. Be careful not to lose O-Rings, gaskets or spacers. Do NOT remove the rubber diaphragm from the top of the body of the instrument.
For the Servox and Optivox, remove the metal sleeve, too. On the Denrick 3, the head is factory sealed and it is more water-resistant than most units, so do not try to take the head off. With the SPRK AL, the head does not come off.
Rinse all parts of the unit inside and out in tap water. Then carefully shake as much water as possible from the AL and carefully pat everything dry where you can. Set all parts of the disassembled unit in a clean, dry, safe place where nothing will roll off or get bumped off, and let them dry for 24 hours.
With the Cooper-Rand Pulse Generator (gold box), unplug the Tone Generator and the cord. Take off the back cover and batteries and also take off the front cover. Rinse the circuit board, covers and batteries in clean tap water, carefully shake water off and dry with a towel. Leave all parts disassembled and spread out to dry in the open air for 24 hours.
With the Cooper-Rand Tone Generator hand-held piece, remove the cord and tube. Rinse the device, especially in the opening where the plug is, and then shake hard with the stem (tube connector) in the downward position. Put it aside to dry.
If you have a hair drier that can be set on cool only, no heat, you can help the process along a bit on any instrument by blowing air gently into the parts. (Do NOT use heat. Warm to hot temperatures can damage your AL).
Be sure to leave the unit completely disassembled for 24 hours. Do not put the battery into your AL until you reassemble it after 24 hours. After 24 hours, carefully reassemble the unit and insert the batteries.
If your AL works and sound OK, great - use it! If it has problems in sound or operation, make arrangements with your dealer or manufacturer to send it for repair. But at least you will have stopped any corrosion from occurring while your AL was on the way to be repaired, so a repair may be possible, and be quicker, easier, and less expensive, and certainly more pleasant for the technician!
Of course, I hope you never need this advice. Do anything you can to keep your AL attached to yourself or your clothes in such a way that it cannot fall very far no matter what. But if an accident happens, rinse the bad stuff off right way and good luck.
Tom Lennox is the owner of Luminaud, Inc. He can be reached at www.luminaud.com
WW/IAL Member Dr. Jerry Newman Dies
Dr. Jerry Newman was a physician, laryngectomee, and active member of the IAL as well as a member of WebWhispers. When asked for his biography some time back and to respond to a question we were discussing at the time about "the worst advice anyone gave you as a laryngectomee" and about larynx transplants, he replied with the following:
"I know laryngectomized physicians are not many in number, for that matter neither are laryngectomees, but there are a few. I have personally known two others who were on the IAL Board with me. One is now deceased and the other resigned due to health reasons.
I am originally from Ohio, born in Canton in 1922. Received my BA and MD from Ohio State University in 1946. Did my graduate training at St. Luke's Hospital in Chicago and Cleveland Clinic. Spent two years in the Air Force as a Flight Surgeon. Practiced Internal Medicine in Florida and Ohio from 1952-1971. Joined the University of Ill. in 71 as the Associate Dean of the College of Medicine at Peoria and became Dean in 1979. Retired in 1992.
Cancer of both vocal cords diagnosed in 1974-75 and treated with radiation. Recurred in 1984 and had a laryngectomy, with a TEP later that year. Recurrence in 1986 (14 mos. after original surgery) and had a pharyngoesophageal resection with a gastric pull-up and a right radical neck dissection. A TEP was again done later that year. I should note that this is really a TGP since it is in my stomach and not esophagus. The following January a node was found in my neck and another resection was carried out. Other than corrective surgery for stomach emptying problems, I have not had surgery since (not counting a cataract this fall).
In your email you asked about transplants. Not much more to be said. The one at the Clinic was for a patient with trauma - a far different situation than a cancerous larynx which probably has had radiation and possibly spread to surrounding tissues. I think the research is fine but not something to get too excited about at this point. The results of reestablishing the nerve function remains to be evaluated. Once again the small numbers of laryngectomees will make the monies for research difficult to come by, and since it is not life saving, as are many other organ transplants, the priority will be down the list.
My series of frightening, stupid or unpleasant experiences with doctors, hospitals, etc., seems interminable. Everyone has and will continue to have them. My advice to the patient is to learn all you can since few physicians will have had the experience or the INTEREST to really understand life after laryngectomy. As you know, it is not only the voice loss but all the other physiological changes that occur due to loss of the glottic valve. These are often ignored or not understood as to how one's life is affected by the absence of abilities to smell, blow, sip, strain, etc., etc.
You asked for one of the dumbest bits of advice I have heard for laryngectomees. One would be not to use tissues to clean the stoma but only a cloth wipe to avoid inhaling paper. I only wish I had bought stock in Kleenex a few years ago. I have never had any difficulty".
Although he declined to discuss the issue when asked to do so some months ago, Dr. Newman was one of two IAL Directors to vote against the organization remaining independent from the ACS. Due to policy changes with the ACS at the national level, they had proposed that the IAL be merged into the ACS, it's treasury turned over to them, the structural organization done away with including officers and Delegates and control over decision-making, and with laryngectomees given one place on their patient services committee. Otherwise, the ACS would be withdrawing most of its financial support from the IAL. This decision to turn down that proposal and remain independent was probably second in importance for the IAL only to its founding in 1952.
Dr. Newman served three terms on the IAL Board of Directors and was chair of the Medical Affairs Committee. Our condolences to the Newman family and Jerry's many friends.
Younger Age No Advantage for Head and Neck Cancers
A report released at the 5th International Conference on Head and Neck Cancer held in San Francisco in August reported on the long term survival rates by age categories for patients who developed cancers in the head and neck regions. It reported that, while middle age patients can better tolerate aggressive therapies including surgery and radiation, this does not translate into longer survival rates.
The study, conducted in France, followed 4600 patients for a nine year period beginning in 1974 who had squamous cell cancers in the head and neck region. The five year survival rate ranged from 33% to 38%, although it should be noted this is for all cancers in the head and neck regions. The long term survival rate for laryngectomees alone is significantly higher.
Additional research is needed to find out why younger patients do not enjoy a long term survival rate over older ones.
Stenosis - No Laughing Matter (Mostly)
Stenosis, also called microstoma, is the shrinking of the diameter of the stoma many laryngectomees experience as healing from the operation takes place. It can become serious enough that it restricts air intake, and may make it impossible for the individual to be fitted with the TEP prosthesis since this could further block incoming air.
Stenosis is treated with surgical reconstruction of the stoma or the use of a series of ever increasing diameter stoma buttons (vents, tubes) until the desired size is obtained. Some ENT surgeons routinely recommend the use of a soft silicone tube post-operatively until the stoma "matures," or settles into a more or less permanent diameter and shape.
But on the lighter side, we recently asked the members to contribute ideas to this line: "You know you might have stenosis when _____".
You know you might have stenosis when:
a dot Band Aid doubles as a stoma cover.
your ENT recommends installing your TEP in your nostril.
you suddenly become a soprano.
you can occlude your stoma with a pencil eraser.
if you try to speak with your TEP, you pass gas instead.
you catch yourself whistling "Dixie" and you didn't intend to.
while climbing stairs the words in "The Little Engine that Could" come to mind.
the idea of breathing through a straw sounds like an improvement.
your worst enemy is now a mosquito rather than a butterfly.
friends ask about your new beauty mark.
your idea of a heavy physical workout is getting out of bed.
tweezers seem the size of salad tongs.
you've started using eyeglass repair tools to clean your stoma.
you no longer need your shower guard. Water drops are now too big to fit.
someone tells you that you look like Mama Smurf.
you dig out your old pea shooter to see if you can now use it.
your stoma can double as a pencil holder.
changing your mind leaves you light-headed.
you start sounding more like a tea kettle than a fog horn.
(Thanks for the punchlines ideas from James Cornish, Paul Galioni, Ron Gillette, Judy Greiwe, Bob Herbst, Stan Hesley, Joe Kelly, Carl Kilmer, Ron Langseth, Carla Lynch, Marianne Peereboom-Koojiman, Carol Rabin, Mary Glyn Spivey, Carol Turnbull).
Welcome New Members
We welcome the 24 new members who joined us in September:
|D. Wayne Ames
Fort Payne, AL
|Malcolm "Deeds" Bigelow
Calgary, AB, Canada
Calgary, AB, Canada
|Jessica Galgano - SLP
Bonney Lake, WA
Brooklyn Center, MN
|Pam Knight - Caregiver
|Lisa Luft - SLP
Vancouver, BC, Canada
|James R. Perry
Aransas Pass, TX
Kingston, Ont., Canada
El Paso, TX
|Randall Vaca - Caregiver