Reflux and Alaryngeal Speech Commercials for reflux medications are everywhere these days. The pharmaceutical industry has made sure that we all are aware of the possible signs and symptoms, as well as the treatments — at least the treatments they happen to be peddling! In the most colloquial terms, reflux refers to stomach contents that head north rather than south. Most folks who have had a total laryngectomy are fairly in tune with the throat and esophagus. This personal knowledge, along with what has been picked up in the lay literature, the internet, and reflux medication advertisements have gone a long way to helping the general public know something about this condition. As a reminder, the esophagus is a tube of muscle that serves as the connection between the throat and stomach. This muscular tube has a sphincteric muscle at each end. The upper esophageal sphincter (UES) (post-laryngectomy, this is often referred to as the pharyngo-esophageal, or PE, segment) is a region of tightness between the lower throat and upper esophagus that must relax when swallowing so that food, liquid, or saliva can enter the esophagus. The tissue making up this PE tissue also can be set into vibration when we produce esophageal (ES) or tracheoesophageal (TE) voice, or when we belch to relieve stomach gas. Material that enters the esophagus from the mouth is propelled down the length of the tube toward the stomach by an orchestrated sequence of muscle contractions that squeeze the food or liquid. At the bottom of the esophagus is another sphincter called the lower esophageal sphincter (LES) that must relax so that swallowed material can pass into the stomach. So, should people with a total laryngectomy be concerned with reflux any more than the general adult population? Are there particular issues or concerns involving reflux that are unique to those with a total larygnectomy? We certainly know that pharyngo-esophageal reflux (that is, stomach contents moving up the full length of the esophagus and into the throat) can cause voice changes in those who have a larynx if the stomach contents make contact with the vocal folds. The same may be true for the person with a laryngectomy. There is a fair body of research indicating that the tightness of the UES in people with a laryngectomy tends to be less than that of people who still have their larynx. Less tightness in this UES (or PE) region is a good thing in most instances as far as ES or TE voice production is concerned. When the PE segment is too tight, the resulting voice can be strained, effortful or even non-existent. Less tightness in the UES at rest has been found, even in most laryngectomees who have a UES that is overly tight, during attempts at ES or TE voice. Such folks are typically still able to swallow (the difference is really a matter of what happens to the UES when putting air into the esophagus vs. what the UES does when at rest). Although the UES tends to be less tight following total laryngectomy, as long as the LES is in working order, reflux should still be prevented. Most of the time it is. However, there are reports that reflux occurs more frequently post-laryngectomy and there might be several issues to consider in terms of alaryngeal voice production that could be impacted by reflux. In the most extreme cases, reflux can cause severe tissue irritation in mucosa lining the esophagus any where along its length. In some individuals this can cause significant pain. A small percentage of individuals with severe esophageal mucosal injuries high up in the esophagus may report that using TE voice is uncomfortable. Presumably this is because of the added air pressure in the esophagus that either distends (stretches) or presses on the already irritated tissue. In other individuals for whom the reflux occurs all the way up to the UES tissue itself, there may be pain during voicing. The UES tissue will be set into vibration for those who use TE or ES voice. The vibration involves tissues moving away from and then toward one another such that tissues in the UES may "slap" against one another. Because the TE and ES voice tend to be somewhat hoarse anyway in most folks, a change in the voice quality towards hoarseness (as may be noticed in non-laryngectomized speakers) is not always perceptible, but the pain is. Discomfort or pain during voice is a matter that deserves immediate attention from the physician and therapist in order to begin working back to the cause. In other individuals, reflux up to the UES could cause another type of voice quality change. There may be a wet-gurgly voice quality. The refluxed material that reaches the UES region may be responsible for this change directly if it is set into motion along with the UES tissue. However, the volume of refluxed material is often small and likely to coat tissue rather than pool in places. Still, the refluxed material can cause a changed saliva for some individuals such that the volume is increased, or more likely, that the consistency is different (usually thicker, frothy). This saliva may pool atop the UES and vibrate with this tissue creating a wet-gurgly sound. Those who use TE speech may have an additional concern related to reflux. One end of the voice prosthesis rests within the esophagus itself. Severe reflux that makes it all the way up the length of the esophagus to the UES would also bathe this valved portion of the prosthesis. Some have suggested that severe and persistent reflux might contribute to valve degradation. From my own caseload, I have a handful of patients for whom valve life appeared to be extended notably once reflux was under pharmaceutical control (these were just impressions from myself and the patients, not from a controlled investigation of the issue). In another valve-related situation, a TE patient had a valve that failed because of yeast infection who then experienced a major episode of nighttime reflux that passed from the esophagus through the TE valve and into the trachea. The individual awoke with severe coughing and difficulty breathing. Subsequently, the doctors were able to document caustic injury to the lungs. The case highlighted for me the need for both careful control of TE-valve yeast issues as well as control of reflux in those with suspected problems. Those who undergo a more extended laryngectomy that involves the esophagus (that is, some degree of esophagectomy) deserve brief comment. In some patients, the esophagus may be resected and the remaining esophagus and attached stomach pulled up. In others with greater resections, the esophagus may be reconstructed with other tissue from the lower GI tract such as the jejunum or even the colon. A functioning LES becomes particularly critical for these folks because the former UES tissue is removed. Material that is refluxed into the esophagus may tend to pool in certain places (for example, along suture lines from the esophageal reconstruction) and not be easily moved back into the esophagus with saliva or other swallows. These folks also are the ones who are more likely to already have a wet-gurgly sounding voice. They also may not have the same sensitivies within the newly reconstructed esophagus and as such may be less capable of detecting pain or discomfort that might usually be associated with reflux. These patients pose a host of challenges in care from the perspective of the speech therapist and medical providers — control of reflux is one of those. Even though they may not be symptomatic in terms of voice or discomfort issues, the reflux might be important for TE valve life (if they are a TE user) and also because of the more general concern that persistent reflux can be harmful to the esophageal mucosa. Fortunately these days, the doctors have a host of medications and procedures that can be considered for treatment. Medications are a primary line of treatment, with surgeries to tighten the LES reserved for only the more involved cases. There also are behavioral changes that can be made to help manage reflux and these are usually tried in conjunction with medications. The behavioral changes that are often recommended include not eating or drinking for 2-3 hours prior to bedtime, diet changes (eliminating alcohol and caffeine, limiting fatty foods, etc.), elevating the head of the bed, losing weight, and avoiding restrictive clothing among other things. The behavioral plan may need to be tailored to the given individual and so the involvement of the physician (and possibly the speech-language pathologist) is important. Reflux is often viewed as a relatively minor medical issue. While that may be true in most cases, there are reports that the tissue changes caused by on-going reflux may be a precursor to esophageal cancer cell formation. In addition, for the laryngectomy speaker, there may be very direct impacts on voice production. For that reason alone, the speech-language pathologist, physician, and patient should all be concerned about identifying when reflux is occurring and then doing what is needed to take care of the problem.
1996 - 2006 For the people who were not with us during those early years, here is how our group started. Almost 10 years ago, in the summer of 1996, Dutch Helms, a laryngectomee from 1994 and a fairly new computer user, started a special section of web pages, called Cancer of the Larynx, as part of his own personal web site. He added information as he could find it and suggested that when other larynx cancer patients found him, they join him in being listed on the site so they could all begin exchanging e-mails and ideas. A few years later, Dutch wrote about that time:
It is interesting to see that we started, not as a local group, but as a world wide organization with the first ten Email addressees. We had two from England, and the eight from the US were scattered around the country.
(Editor's Note: This is not written BY one of our members but it is ABOUT one of our members. Proud of you, John!) MEDIA ADVISORY - May 16, 2006 For more information, contact Tom Jacobs at 775-843-4302 or tjacobsrno@aol.com. John's not going to run the Bay to Breakers on May 21 dressed as a chicken, naked and painted in Celtic symbols or backwards with sparklers attached to his heels. John is going to run the Bay to Breakers while breathing through a hole in his throat. "John" is John Ready, a sales representative from Redwood City who is one of perhaps 50,000 laryngectomees in this country. His story is one of incredible survival and transformation. John was diagnosed with throat cancer in 1996. Surgery took his larynx, left interior jugular vein and almost 100 lymph nodes, leaving him a survivor who could neither talk, smell or taste. For some who suffered John's fate, it was a handicap that required adjustment: sign language, vibrating devices, notepads. To John, it was a situation to be conquered. Today, he talks without his hands in a voice described as "someone with a bad cold." When John runs the Bay to Breakers on May 21, it won't be funny or weird or a political statement. It will be a man proving that, despite a catastrophic illness, one can not only do what others do, one can still do what others can't. John's life and work is testimony to the fact that a laryngectomy does not have to mean the beginning of a diminished life. John's message is there's a life after throat cancer that may be different but is equal. If you think it would be worthwhile to learn more about John, let us know. John will be at the pre-race event on May 19 and, of course, sporting an official number at the Bay to Breakers starting line when the gun goes off. Note: Tom Jacobs is the lead public information officer for the Nevada Department of Motor Vehicles, a friend of John's for 25 years and a volunteer for the Foundation for Voice Restoration.
TEN TIPS FOR DONATING A COMPUTER Author: Jim Lynch (Reprinted courtesy of CompuMentor, a provider of technology assistance to other nonprofits and the home of TechSoup.org) As more companies, organizations, and individuals find reasons to upgrade their computers, the problem of how to safely discard used equipment continues to grow. The ramifications of this phenomenon are widespread: (1) According to the U.S. Environmental Protection Agency (EPA), nearly 250 million computers will become obsolete in the next five years. In 2001, only 11 percent of personal computers retired in the United States were recycled. (2) Every computer dumped into a landfill represents a missed opportunity to provide Information-Age tools to individuals and organizations across the digital divide. (3) Well-meaning folks that donate out-of-date computer systems directly to schools and nonprofits -- rather than through a recyler or a refurbisher -- can end up passing on more of a burden than a blessing. It costs as much as $400 to upgrade a pre-Pentium computer to today's standards. Ten Tips for Donating a Computer 2. Recycle old and broken hardware. Any equipment that is not working or is more than five years old should be tagged for recycling, i.e. responsible destruction. A computer recycler is a business or organization that salvages useful computer parts before breaking down what's left, safely removing hazardous materials in the process. Note that some recyclers will charge a fee to accept old computer equipment, especially monitors. For listings of recyclers in your area, visit: 3. Contact the refurbisher or recycler before donating. Call the organization or check its Web site to ensure that it accepts the type of computer you plan to give away. Some refurbishing organizations, for example, will refuse anything older than a Pentium II. While you may be tempted to donate equipment directly to a favorite local school or charity, remember that refurbishers are generally better equipped to repair and upgrade computers. They will then pass on ready-to-use equipment to those who need it, often at little or no cost. 4. Remember the accessories. If you can, include the keyboard, mouse, printer, modem, packaged software, or any other accessories you use with the computer. Schools and nonprofits can almost always put them to good use, and most organizations only accept complete systems. 5. If possible, keep the operating system intact. If you are donating hardware with a preinstalled Microsoft operating system, keep in mind that the license is only valid when used with the machine on which it was originally installed. Since charitable organizations usually cannot afford to purchase and license new operating systems, a legal transfer (whereby the computer and operating system stay together) is always preferable. While Linux and Macintosh operating systems have different requirements, as a general rule, try to include the operating system software with all donated computers whenever possible. 6. Provide the original software media and documentation. To ensure that the software transfer is legal, pass along the original disks, media, Certificate of Authenticity sticker (usually on the computer), user manual, and other documentation that came with the equipment. 7. If you clear your computer of personal information yourself, it's best to use disk-cleaning software. "Personal information" includes your Internet browser's cache, cookies, history; your email contacts and messages; your documents; your recycle or trash folder; and all nontransferable software. The best way to clear this is with a disk-cleaning utility that overwrites all the sectors of your hard drives, making your data unrecoverable. Listed below are examples of recommended disk-cleaning utilities. Freeware Windows Disk-Cleaning Software: (All available at Shareware.com ) If the computer is still under a manufacturer's warranty, you can also call the company's technical services department and ask for specifics on how to delete personal files. 8. Follow computer delivery instructions. Many recycling and refurbishing organizations have specific locations where equipment can be donated, while others have delivery instructions they expect donors to follow. 9. Keep a list of what you donated for your records. Remember that tax season will always return -- and you are likely eligible for a deduction if you donate to a nonprofit refurbisher. Most school or nonprofit refurbishers can provide a tax receipt upon request. Business donors can deduct the un-depreciated value of the computer, and individuals can deduct the current market value of a computer. 10. Plan for future donations. Rescue a box from the recycling bin and use it to store the documents that came with your new computer, so that when the time comes to donate it, you'll have everything in one place.
"Georgia on My Mind" I had my surgery March of 2000, getting a TEP that now allows me to speak hands-free. What an interesting way to start a new century. A new beginning! What a journey! What a roller coaster! I hope to share with you, on those nights when I awake and know that further sleep will not happen, some of my experiences that are unique to being a lary. Many of them will be very familiar to you. It is my hope that by sharing, we all can have a greater sense of community and take pride in our accomplishments. And if I can make you smile, that would be the best of all. Why "Midnight Train from Georgia"? Well, I have left behind the life I knew and am trying to find a "simpler place and time". I had a choice to stay in Virginia or come on down to soft spring showers, winters that welcomed a fire in the fireplace, and summers that take your breath away with the flowers and bird songs, crickets and porch swings and even fireflies. Now that I am a lary, it is important to find the right place and to try to return to simple pleasures. I used to be a very successful consultant making more money than I deserved and always anticipating someone would figure out that I didn't have all the answers. It was a complicated, stressful time. If you looked from the outside, I had everything. But then one day I woke up from surgery and could not speak or smell or blow on my hot soup or lift my head without supporting my neck. As time went on, the adjustments multiplied. My wardrobe, one that covered my stoma. A timer for cooking because I couldn't smell the status of my cooking. Double checking the stove to make sure burners were off because I could not smell the gas. Asking if the food I fixed for others was ok because my taste was altered. Avoidance and denial that came from my siblings. Since my father had been a lary, they probably felt they couldn't handle it again so they withdrew and remained there. My grown children were frightened and angry. Discovering the number of folks in my life that prayed for me and did not avoid me and finding some that emailed me everyday. The constant, unfailing support and care given from my husband. Finding the Whisperers and learning so much from others. Dealing with no income. And that was just the first 6 months post-op! But it really was much simpler than getting on a plane and traveling 5 days a week, dealing with nice people who needed a variety of assistance that I always wondered if I could do adequately. Learning trach care and thinking before I attempted to speak was the ultimate in simplicity. No hidden agendas here! And knowing who was emotionally capable of dealing with me and who was not was a tremendous relief. It's called cleaning house. In order to survive, I had to return to the basics of life and pleasures. I had to focus on daily accomplishments like learning to love my stoma J and all that meant. Pacing myself because the old energy was gone. Accepting the lows that could hit at any time. And like Blanche in the Tennessee Williams play, I was "relying on the kindness of strangers." In many ways it has become liberating. Back to trains...I just plain love them! A hundred years ago in what seems to be a previous lifetime, when I was young, a very handsome young man who was a train engineer, wanted to date me. However my parents said I was too young, not yet sixteen which was the magic age. But my father did accept a tour of the roundhouse and a short ride in the engine of a train!!!! Needless to say, my handsome young man did not wait for me. He did give my father a favorite memory however. Given my druthers, I would take a train anytime, anywhere. Every night I hear the whistle of at least one as they go through our small town outside of Atlanta. Always moving, always going around the next curve, always something to see. When you ride, always so many choices, sleep, read, watch, eat, walk, talk, or not. Trains multitask: some work by hauling the box cars while others are the passenger trains serving folks and still have just a glint of glamour from thirty years ago. Kind of like us, right? I have come to love Georgia. I am a transplanted Yankee and continue to feel blessed to be out of the Minnesota winters and to learn from the older population in this area. There is a lilt to their speech and a look in their eye when they talk about their "daddy" and their "mama", their favorite foods and "how things use to be", that is fascinating. I even tasted moonshine!!! The important word is "taste". Wow!!!! That sent my reflux into overdrive! Even though its makers swear it will cure whatever ails me, I think I will continue to pass on that one. I just learned this week that sausage gravy is not made with coffee. That is red-eye gravy! Ah, I love them both and can almost hear my arteries slam shut when I have them. But what moments of bliss to taste them! And when I am really depressed and feeling -what the heck--, a chicken fried steak with mashed potatoes on the side, well, what more can you ask for? After eating that, I know life is worth living, even if just for the next Southern dinner. What a far cry from Wonder Bread and the rather bland food where I came from. I am employed by a very large international company. But the local division/office is my work community. We provide services to State government by managing the Medicaid program. It is a job that is important to me. I was a nurse and have been in healthcare related industries for over thirty years. It is also important to me to work and add value with that work and to be accepted by my peers as a lary as well as a worker. I want to raise awareness of us. Under the ADA, we are classified as disabled but I don't feel that way and fight every temptation to fall back on that as long as I am able to work. For those of you who have had to make decisions that are different from mine, God love you! Until someone walks in our shoes, they can not make judgments about how we deal with things, especially those issues that impact our income. OK, as the song says, I got to go, I got to go. And the whistle blows until the next time ... when my topic will be medical providers and health care. Love and prayers to all, Vicki P.S. Please give feedback to editors and/or me ( VEorio@aol.com ) about "Vicki's Midnight Train to Georgia."
I am constantly amazed with the creative resilience of survivors. Case in point- a recent posting on the WW site regarding maintaining seals for hands-free devices. Apparently a recent lary had discovered that the glue he used on his hairpiece was particularly effective. Now, with no disrespect intended, I couldn't help but think, like Larry, the Cable Guy on Blue Collar Comedy says "I don't care who you are, that's funny!" You do have to admire the man. First off that he would admit it- knowing how guys are about their hair- that takes guts...but more importantly that "aha" moment he must have had one morning standing in front of the bathroom mirror getting ready to face his day and out of necessity thinking, "Why not try this?". That is creative thinking. I LOVE this guy and I have no idea who he is and sincerely hope he is not offended. He shouldn't be- he should be proud. It takes character and strength to play this hand with grace and humor.
THOUGHTS TO PONDER "The happiest of people don't necessarily have the best of everything; they just make the most "Only he who has seen better days, and lives to see them again, knows their value"
Mark Twain THE POSITIVES OF CANCER? NO. But, POSITIVES that result from a POSITIVE outlook!!!!
LARY WITH CAROTID ARTERY BLOCKAGE Carol Toner from Toronto, Canada writes: "My daughter has been a wonderful support and, because of my illness, she has become a volunteer at the cancer hospital to support others who have a family member with cancer."
Above courtesy of Mike Reed
We welcome the 32 new members who joined us during May 2006:
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Murray's Mumbles ... Musings from the President
John travels the country speaking to others who have suffered his fate and teaching others to speak as he does. He's also a consultant for the Foundation for Voice Restoration ( 
Dutch's Bits, Buts, & Bytes
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Murray Allan..............................President