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«April 2005 3/31/08 9:35 AM April 2005 Name Of Column Author Title Article Type Musings From The President Murray Allan Webmaster Gets Big Break News ...»

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Whispers on the Web - April 2005 3/31/08 9:35 AM

April 2005

Name Of Column Author Title Article Type

Musings From The President Murray Allan Webmaster Gets Big Break News & Events

VoicePoints Corina Van As-Brooks Lary& Sense Of Smell Education-Med

Musings From The President Murray Allan Casey-Cooper Nominations News & Events WebWhispers Columnist Maggie H. Geehan My Dream Is Realized Experiences LivingThe Lary Lifestyle Joan G. Burnside Chapter Two Education-Med Between Friends Donna McGary Canary In Coal Mine Experiences Bits, Buts, & Bytes Dutch Computer Tips Experiences Welcome New Members Listing Welcome News & Events Murray's Mumbles... Musings from the President Webmaster gets his big break in El Lago, TX Now that I have your attention I must say that there is bad news and good news in El Lago, TX, the home town of our Founder and Webmaster, Lt. Col. David L. Helms, USAF (Ret.), who is known to us all as Dutch. "What", you may ask, "could have occurred in this sleepy Texas village which nestles on the shores of Clear Lake and Galveston Bay?" Well here is the BAD news from February 28th, 2005.

While Dutch was running a quick errand so he could immediately return to WW Central, in order that those all important emails that we all read could be checked for authenticity and rerouted, he had an unfortunate accident.

While skipping down a rain covered staircase in his apartment complex, a terrible thing happened. While just a third of the way down the stairs, Dutch slipped and tumbled the rest of the way, losing his right shoe in the process and banging his shoeless right foot into two of the metal stair rails.

http://www.webwhispers.org/news/apr2005.htm Page 1 of 20 Whispers on the Web - April 2005 3/31/08 9:35 AM Fortunately, a neighbor heard the noise and was there in a heartbeat. Dutch was heard to say "My foot

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The loss of the sense of smell (or loss of olfaction as it is also called) is one of the consequences of total laryngectomy that does not receive much attention. Nevertheless, olfaction is an important sense in daily life. For instance, if you think of smelling gas, fire, or spoiled foods to alarm you, or smelling a nice perfume, or food that is so good it makes your mouth water, it is not hard to imagine that the loss of this sense has a considerable impact on daily life.

Olfaction

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odors is then sent to the brain via the nerves and the odor is recognized.

For this mechanism to work, it is essential that the air containing the odor molecules passes the olfactory organ. Normally, air passes the olfactory organ each time someone breathes in through the nose (see Figure 1).

–  –  –

Olfaction after laryngectomy Research has shown that following a laryngectomy, people are not able to smell as well as before the operation. In a study at the Netherlands Cancer Institute, with 63 patients participating, odor tests showed that 68% of the laryngectomees in that study were considered non-smellers.

The underlying reason for this problem is the absence of airflow into the nose (see Figure 2). Since laryngectomees are breathing in and out through the tracheostoma, the air simply does not reach the olfactory organ high up in the nose. The olfactory organ itself is unaffected by the surgery. This means that when the odor can reach the olfactory organ, you will smell it. This happens for instance when the odor is literally blown into the nose, or when the odor is extremely strong or vaporizing.

–  –  –

Rehabilitation of olfaction There may be situations in which it is actually an advantage not to be able to smell automatically but in most situations it would be nice to be able to smell. At the Netherlands Cancer Institute a technique has been developed that can help laryngectomees to learn to smell again. The method is called the Nasal Airflow Inducing Maneuver or Polite Yawning Technique. Research of the technique has shown that quite a high percentage (89%) of the participating laryngectomees were able to learn to use the technique in one therapy session. An evaluation after 6 weeks showed that 46% of the laryngectomees that could not smell had mastered the technique and now were able to smell again. A long-term evaluation showed that not all laryngectomees were able to carry out the maneuver correctly even after a longer period of time. The results of further investigations suggest that initial intensive training and using a water manometer (see Figure 3) for biofeedback, improves the results and increases the number of laryngectomees that are able to successfully use the technique. As with many things, practice is the word!!

–  –  –

Polite yawning technique The name of the technique already indicates the core of this method: it looks like polite yawning. By making a movement that is similar to yawning with closed lips, the oral cavity is enlarged and the vacuum that is created causes air to flow into the nose. This airflow reaches the olfactory organ and you can smell!

The pictures in Figure 4 and 5 show you how to make the movement. These are the key

points:

Close your lips (and keep closed) Hold your tongue against the roof of your mouth In one movement, simultaneously lower your jaw, floor of mouth and tongue downwards Repeat the movement

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It is important not to breathe in too heavily simultaneously with performing the movement.

Many laryngectomees initially do breathe in during the movement simply because they are used to taking a breath when trying to smell something. It is not necessary at all and can make you dizzy.

Refined polite yawning technique

Some laryngectomees are able to learn to make the movement somewhat smaller, which is usually appreciated because it makes the movement less visible. In general, it is advised to start with the regular polite yawning at first, to develop a good feel for the movement. As a second step one can try to use an isolated pumping movement of the back of the tongue and the floor of the mouth and eliminate the downward movement of the jaw (this looks like the movement frogs and turtles make with their floor of mouth!). The key points for this

movement:

Close the lips (and keep closed) Hold your tongue against the roof of your mouth Stabilize the tip of your tongue against your teeth or against the ridge on your palate right behind your upper teeth Move the back of the tongue downwards (compare with tongue clacking) Repeat the movement

Water manometer for visual feedback

As mentioned earlier, we have found that the use of a water manometer (see Figure 3) has been very helpful to see the immediate results of the movement (the water will move towards your nose if you are carrying out the movement correctly). It will also help you to improve the movement, to make it smaller and more efficient. The manometer that you see in the picture may be hard to make, but you can simply make one yourself by taping a plastic tube onto a piece of cardboard in a U-shape.

Teamwork

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teamwork and I did not want to write this article without acknowledging my colleagues who all played an active role in this project: Prof. Dr. Frans JM Hilgers, Prof. Dr. Frits van Dam, and Rianne Polak. This project has been a lot of fun and we have enjoyed working on it. We hope you will enjoy regaining your sense of smell!

A part of this project was funded by the Dutch Cancer Society and they enabled us to write a manual about this technique in Dutch. This manual has now been translated into English and we have made a CD-ROM containing the manual and many other documents and video clips. This CD-ROM may help you in learning to smell again and may help your Speech Language Pathologist in understanding the technique and training you.

The CD-ROM is titled ?Olfaction regained, using the Polite Yawning Technique? (ISBN 90Editor: Frans JM Hilgers). Atos Medical has been kind enough to distribute this CD-ROM for us and help us reach our goal in making this method available to many laryngectomees around the world. The CD-ROM is free and you can obtain a copy by sending an e-mail or give a phone call to Brenda Martin (Brenda.Martin@atosmedical.com, 414-750-8398).

–  –  –

My name is Maggie, sixty-one years young, a laryngectomee, and I live in Florida. One of my goals as a lary was to be able to talk hands free using the Barton Mayo Button. I had two main challenges preventing me from reaching my goal: my stoma did not have a ridge all the way around to hold the button in and my stoma was too big. This is my story of how M.D. Anderson Cancer Center (MDACC) in Houston, Texas made my dream come true as they performed reconstructive plastic surgery on my stoma and then made a customized BM Button to fit my ?new? stoma. What I am sharing worked for me but that is not a guarantee that it will work for everyone. Each of us has different challenges and each requires different solutions I had my laryngectomy April 18, 2001. I was blessed with the gift of being able to have a TEP. For the next year, I used my thumb to occlude my stoma to talk. After many months of trying different glues and discs so I could talk hands free, my SLP and I finally found a system that worked, but only for several hours. So I would spend one and a half hours every morning cleaning, prepping, and gluing a disc with other self adaptations to keep the disc from leaking. Within several hours, the disc always leaked and I would have to use my finger to cover the leak. Some days, I would go through three discs. While this was better then always occluding with my thumb to talk, it still wasn?t where I wanted to be.

In July of 2002, my SLP tried the B-M Button but it would not stay in place. She informed me that she was sorry but there was nothing else she could do to help me. Then, a few months later, I went to the Florida Laryngectomee Association Convention in Daytona Beach and Nancy Blair, SLP, tried some of the larger Buttons and they wouldn?t stay in either. She told me that maybe MDACC could help me. So, Nancy and I both contacted them and I went to MDACC in March, 2003, where I saw Julie Bishop-Leone, SLP, and Dr. Jan Lewin (in charge of Speech Dept). Julie and Dr. Lewin agreed that my stoma did not have a ridge all the way around. Next was Dr. Reece, Plastic Surgeon, who had two questions to ask me before he would even consider doing surgery. One - Did I still smoke cigarettes? No, http://www.webwhispers.org/news/apr2005.htm Page 7 of 20 Whispers on the Web - April 2005 3/31/08 9:35 AM ask me before he would even consider doing surgery. One - Did I still smoke cigarettes? No, I had stopped smoking. Then he wanted to know if I had any radiation. No. He said ok, that if I had been treated with radiation that he would have to make sure that my skin would be able to respond in a positive manner to reconstructive surgery. So, now I had to see Dr.

Lemon, an Oncologic Prosthodontics in the Head and Neck Dept. Dr. Lemon said that he would be willing to try to make a customized B-M Button for me if the stoma surgery was successful. Any adventure or journey takes time and patience :-) I saw Dr. Reece again and he wanted to be sure that I was physically ok to undergo surgery. Not an easy question to answer when you have a medical history like I have, which includes a history of tuberculosis, brain aneurysm surgery and an inoperable brain aneurysm, silent heart attack, history of strokes, seizures, and more. So, Dr. Reece ordered many tests, including heart stamina. What this meant was that I had to go back to Texas one more time before we could schedule the surgery. One of the tests was to have a psychiatric evaluation because I had attempted suicide when I was in my twenties (severe PMS). Dr. Rickman, who did the psychiatric evaluation, decided that there was a very slight chance that I might be ?normal? :-)? So, I passed all my tests. It was now July, 2003 and Dr.

Reece scheduled my surgery.

The surgery would involve making a two inch incision just above my right knee and removing a twelve inch tendon. He made an incision at three, six, nine and twelve o?clock of my stoma. He then inserted the tendon around the inside of my stoma, pulled it like a draw string and sewed it to my breast bone right there below the stoma. I did not have any pain in or around my stoma after my surgery. I spent the night in the hospital and then went back to the hotel, remaining in Houston for the next three weeks.

My recovery went very well. Dr. Reece removed the rest of the stitches ten days after the surgery. During this time, I used an electrolarynx to talk. Several weeks later when everything was healed, I went back to using the glue and disc so I could talk hands free again. When I first started to walk after the surgery, my right leg felt a little bit weird. Not painful. Just wobbly. Three days after the surgery, I was back to walking my three and a half miles in one hour each day for exercise. Three weeks after the surgery, Julie tried a regular B-M Button. It would stay in for almost two hours and then pop out. So, Julie, Dr. Lewin and Dr. Lemon measured my stoma to make a customized button. Then I went back home to Florida.

Four months later, December 2003, I received my customized BM Button and I wore it for two hours the first day, then up to three hours the next day. It wasn?t working and was popping out. I cried.

It had now been a year since I first contacted MDACC and maybe this wasn?t going to work after all. I called Julie and told her what was happening, that the top part of the button was pulling out. It seemed to be too long at the top. Julie is a beautiful and loving person, who was going out on a maternity leave, so we set up an appointment for me to see Jodi in February, 2004. I was so frustrated and was determined that I was not going back to using glue. So, I asked Spirit to help me figure out a way to keep the button in. With Spirit?s guidance, I was able to make, what I call ?

Maggie?s B-M Button Attachment (see photo at right). It was not perfect but it worked for me and I did not return to using glue and discs.



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