HEADLINES
Pat Sanders, Editor
Kirklin Clinic Head & Neck Cancer Support Group, Birmingham, AL
distributed by American Cancer Society
September, 2001

Looking But Not Seeing      Dick Williams           RWill26014@aol.com

A while back, in a different lifetime, I had vocal chords, breathed through my nose and mouth, talked normally, sang poorly, and all the rest of that. Seems so long ago somehow.

During that other lifetime, I knew only one laryngectomee personally. I knew him for roughly ten years. We lived in the same town, shopped in the same supermarket and I would see him and speak with him there. On occasion, we would have a drink together at the local watering hole. One time, we worked a booth together selling beer at the Fireman's picnic. Another time we were on the same volunteer clean up crew when the river overflowed. It will suffice to say that I would see him anywhere from six to maybe a dozen times a month or so over the ten years that I knew him.

He spoke with an electrolarynx and did very well with it. One time he let my daughter try to speak with his electrolarynx; she was thrilled. I knew he had no vocal cords because he told me that much, but I knew little else about his circumstances. He always wore something that looked like a turtleneck blouse and I never saw any hint of surgery anywhere. To the locals, he was simply "Andy" or the guy that talked with that "funny sounding thing".

In all the ten years I knew of, and associated with Andy, I knew something about him was different, but I never realized that he had to breath through a hole in his neck to survive. It’s embarrassing. How could I not have known? Well, I didn’t know because no one ever told me and, in ten years or so, the subject just never came up.

Not until I had my own surgery in Feb 1998, and I got my own "funny sounding thing" to talk with, did the full extent of Andy’s situation finally dawn on me. Only then did I realize that Andy was a "Neckbreather", as I now was, and that he had dealt with the special compromises that come with being a laryngectomee.

Like I said, it’s embarrassing....now, but is a tall order for us to educate the public in general, who may not be embarrassed, just uneducated about what happens with a laryngectomy. There are a lot of people out there, looking but not seeing, just like I used to do in my other life. We can help them see.

TEP problems: Leakage

At first glance a tracheoesophageal puncture appears to be a "quick and easy" method of voice restoration after total laryngectomy. However, any experienced patient or clinician will verify that managing the TEP requires skill and patience. Leakage, that process whereby liquids pass either through or around the prosthesis is the most frequently occurring problem encountered by the TEP user. Leakage through the prosthesis results from failure of the one-way valve to fully close. Leakage around the prosthesis is a more complex event and should not occur if the tracheoesophageal tissue is healthy and the prosthesis is sized and seated appropriately. This article attempts to discuss the most common causes of TEP problems and provides simple management suggestions for the patient new to TEP voicing.

If you think you are experiencing leakage, it is important to observe the behavior of your prosthesis is a well-lit area as you drink water or another thin liquid. Leakage through the prosthesis typically comes out as small droplets suggesting that the inner flap valve is slightly ajar. If liquids gush out, that suggests that the flap valve is fully open. Frequently, cleaning the prosthesis will resolve the problem. Please repeat your swallowing observations after cleaning. If the problem has not resolved and you have an indwelling device, contact your clinician. If you use a traditional device, replace it with a newer one. Both Provox and InHealth produce plugs (for use with a 20 French prosthesis) that are inserted into the TEP, which prevent aspiration of leaked material. Leakage around the prosthesis is often more subtle and may be isolated to one side of the prosthesis. If you are using an indwelling or traditional device, contact your clinician forthwith.

Leakage through a new prosthesis that occurs immediately after insertion has a finite number of common causes:

  1. the valve mechanism may be defective,
  2. The flap valve inverted during the insertion process and is now "stuck" open or

3) A small piece of gelatin, from the gel cap, did not dissolve and is lodged between the seating ring and the flap valve. The solution to these scenarios is to simply remove the prosthesis, inspect the device for competence of closure and clean debris if present.

If leakage occurs after prosthesis has been in place for several weeks or longer, this may indicate the end of the valve’s natural life span. Rough cleaning may hasten the demise of prosthesis. Conversely, poor stoma and prosthesis hygiene may also reduced the life span of the device. TEP users should refer to the manufacturer’s recommendations for specific instructions. Appropriate care of the prosthesis can also fend off microbial colonization (Candida Albicans) of the valve. Candida growth on the valve will prevent full closure of the flap valve to the seating ring. Recurrent candida failures are often treated by a protocol of 1 tsp. of Nystatin swished in the mouth for FOUR or more minutes. This is repeated twice a day. TEP users who have a traditional prosthesis can simply rotate between two prostheses every two days. The prosthesis not in use should be cleaned and submerged in hydrogen peroxide.

Leakage around a TEP is relatively rare. It may occur when the open puncture, that the prosthesis is seated in, widens. This can happen if the prosthesis is too long for the user’s tract. The TEP moves back and forth in the tract thereby dilating the tract. The tract should be measured and a more appropriate length prosthesis inserted. In this circumstance leakage should resolve within 48 hours. If the tissue around the prosthesis does not heal down around the shaft within this time period, comprehensive medical evaluation is warranted to determine the cause of the problem. Causes of poor tissue integrity are potentially serious and include Radiation exceeding 6500 rad, uncontrolled diabetes, recurrence, or metastatic disease. Increasing the diameter of the prosthesis just to "fill the space" and relieve the symptom is contraindicated.

Katie Dietrich, M.S. CCC-SLP
Senior Speech Pathologist
Milton J. Dance, Jr. Head & Neck Rehabilitation Center
Greater Baltimore Medical Center
Baltimore, MD
Kdietric@gbmc.org

The Servox and Hearing Aids  Vicki Metz     <vmetz@hotmail.com>

I speak with a Servox and my husband wears two hearing aids. He does really quite well with hearing me. We did go to the hearing aid technician when he got new ones, and she fine tuned (or did something) so he would be able to understand me better. But, in that area, we really have no problems, except if we are in a noisy environment. I just say we make a good pair—I can’t talk (normally), my husband can’t hear. On asking my husband about this, he said he has a fairly new type of hearing aid—not the absolute latest, but he said if he had the original hearing aids he started out with, before my surgery, he probably wouldn’t be able to understand me very well.

Regarding people you run into. I was having trouble with a bakery. Every time I called them to place an order, they would hang up on me. I was having to have one of my daughters place the order for me. I got tired of that, so, one day, I went with my husband to the bakery so he could pick up the rolls he wanted. I explained to the people in the bakery that they kept hanging up on me. I told them I was a customer, and I needed to deal with them. I was talking to them with my Servox and said they were just going to have to get used to it so that I could place my orders. They said they would do better after that. After that, when I called them, after they heard my initial greeting, they would say, "Oh hello Mrs. Metz. And do you want your usual order of 3 dozen hard rolls for next Saturday?"—I didn’t even have to tell them. I just said yes, thank you, and good by. And smiled.

Another time, I was calling a CD store to pick up an order for my daughter. I heard the clerk who was on the phone with me, speak to someone in the background—saying that I sounded like a robot. That got my ire up. After I took care of the remainder of the phone conversation, in a day or two, I went to the store and asked to speak to the person who talked to me on the phone. The clerk said that person was not there that day. I asked to speak to the manager to which she replied she was the manager. I explained to her what happened. I said, as a customer, I expect to be treated with respect and in a professional manner. I told her that I know I sound like a robot, but I do not expect anyone, in a professional capacity, to be saying that in front of me (even if they thought I didn’t hear them). She got a bit rattled, apologized profusely, said it would never happen again, that she would talk to that employee, and gave me free coupons for store items.

You see, I am a wife and mother. When I am not working at the office, I am at home alone most of the time—as my husband works and my daughters are in school (during the school year). So I have to deal with the phone during the day. I can’t rely on my family to help me all the time. If I am really having trouble with someone on the phone understanding me, and I have a lot of details to tell them—numbers, words, etc., then I will go through my TTY. But, on the whole, I usually manage pretty well. I’ve had to actually drive to certain places, like where I get the car repaired, to talk to them in person, as it is so noisy there, and they can’t hear me well enough—but, again, a couple of them are used to me, and we deal quite well on the phone. I just insist on handling my life as normally as possible—pretty much like I did before my laryngectomy.

What I am saying is that, in certain instances, I have dealt with rude people—laughing at me over the phone, hanging up on me, others just not able to understand, and not seeming to even try, some people thinking I am a crank caller (I never call anyone I don’t know late at night). But most of the time I am able to get through to people. The minority that I have real trouble with, I figure, are just not worth it. I don’t know them and probably will never meet them. I know what is important to me and it is my family, friends, and acquaintances.

VOICE TOO WEAK?

Those who have weakness in the region of the pharyngeal-esophageal segment, leaving you with a voice that is weak sounding, may be interested in a pressure prosthesis introduced by Dr. Dan H. Kelly at the IAL Voice Institute this year in Myrtle Beach.

The neck support band is designed to protect the carotid arteries and jugular veins from excessive pressure while keeping pressure on the patient's segment, thus giving strength to the esophageal or TEP voice.

The pressure prosthesis is custom constructed from measurements provided by the patient's clinician. It is delivered with a fitted neck-support band, the designated pressure pad, extra elastic band and instructions for care and cleaning.

For clinicians who would like information on ordering either the professional model for testing and demonstration or the custom patient prosthesis, the contact address is:

P-E Segment Pressure Prosthesis
Attention: Clarence Huff'
1002 Washington Street
Concordia, KS 66901-4218
Chuff@dustdevil.com