Internet Laryngectomee Support
March 2000


What's In A Name?

    The WebWhispers Newsletter is now the WebWhispers Journal.  While we will continue to bring you timely announcements and information, we will now publish a higher percentage of topics of a more "timeless" or lasting nature.  Our monthly publications are archived on the WebWhispers site, and we want the Journal to be just as readable and full of useful information a few years from now as it is today. 

    One of the true wonders of our time or any other is the Internet.  It allows us to instantaneously communicate with each other around the world.  For example, we know immediately through our e-mail grapevine of the "news" of experimental cancer treatments, the death of a member, or changes in the world which affect laryngectomees. 

    And the Internet also offers possibilities which newsletters made of paper and mailed out cannot, and we hope to make use of these newer media to better inform us all.  An example is the sound samples included in this issue of the WebWhispers Journal.  We are planning future issues to include short video clips of interest to the laryngectomee community.

    We hope the name more accurately reflects what this publication has become and can be.

Panel Discussion - Who Makes the Voice Choice?
Compiled by Pat Wertz Sanders

PAT PETRONE pointed out in a recent e-mail message to WebWhispers the problem some patients have in getting good information or follow-up care after the laryngectomy.

     Pat wrote about stopping to shop in a local market and being approached by the wife of a laryngectomee after she heard Pat speak to the cashier in her good, clear TEP voice.  The lady explained that her husband was six months past surgery, had two fistulas, and was still on a feeding tube.  He had been told NOTHING about communication choices.  They had never heard of a TEP (tracheoesophageal puncture) or ES (esophageal) speech.  He had no training with his AL and didn't want to use it.  Of course. He didn't know how. 

    Pat went out to the car where the husband was waiting, and talked with both of them about speech choices and where they might get some help from local SLPs.  One of these SLPs Pat credits with saving her mental health by being there to inform her of her options and assure her that she would be back at work and leading a normal life.  Pat commented, "The wife was in tears after I spoke with her husband and they saw that there is the possibility of light at the end of the tunnel." 
(Pat can be reached at pmpet@aol.com)

CARL STRAND, a laryngectomee and newsletter editor from Mystic, Connecticut, writes on the shifting of roles of health professionals in the treatment of laryngectomees:

    Whether it's a managed care, insurance issues or other reasons, what matters is that too many patients are not getting the best care and the best answers.  Too often we are hearing from or about:

People with no choice of speech method.

People getting a primary puncture (at the time of laryngectomy) rather than a choice.

Laryngectomees getting indwelling voice prostheses when they are perfectly able to handle a standard duckbill or low pressure prosthesis, and don't even know the difference.

People being fitted (incorrectly in some cases) with a voice prosthesis and sent home without knowing how to handle a problem when they have one.

ENTs selecting ELs (electrolarynxes) for patients.

A doctor who is trying to resolve a prosthesis difficulty with no tests, no troubleshooting.

Others who think anyone who doesn't speak with esophageal speech isn't really trying.

Doctors who perform a myotomy without knowing it's needed, possibly subjecting their patient to a lifetime of unnecessarily quiet speech.

     This is an uphill battle, but it's time that we get the SLP into the equation early on.  Most of us had time to see a speech pathologist before our surgery, if we knew what one was and what they did.

    All prospective laryngectomees should be able to try out different models of electrolarynxes before committing personal or insurance dollars.  A speech pathologist should explain the different types of alaryngeal speech.  The positive and negative sides of primary puncture should be explained.  The speech pathologist and the patient should decide together if a prosthesis is to be indwelling or removable, if this is the chosen speech method.  Ideally, a laryngectomee visitor should be in the picture as well.

    There is also a presumption in the ENT community (ear, nose, and throat specialist medical doctor) that once a patient has an electrolarynx or a voice prosthesis - - that's it.  There's no speech therapy, there's no attempt to really restore communications.  We all know who is a good speaker and who is not and that we each can improve our articulation, phrasing, emphasis, and, if esophageal or tracheoesophageal, the pitch of our speech.  We need therapy. 

    There's been some discussion about doctors not wanting to overwhelm their patients with choices.  Overwhelm us!!  Unless he is in a teaching hospital, a doctor who may perform one or two laryngectomies a year is going to make lifetime decisions about us and for us?  I don't think so!!!  All patients need to be able to make informed decisions about their medical treatment.  If you are going to voluntarily submit to a medical procedure that's going to change your life forever, the medical profession has the duty and obligation to give you choices.

    I think it's time that we and the organizations we belong to take a stand, not just for ourselves, but for those coming behind us. 
(Carl can be reached at CStrandJr@cs.com) 

CARLA DELASSUS GRESS is an SLP at the UCSF Voice Center.

    In general, I am in favor of laryngectomees making their own decisions about the method of communication.  However, one thing to consider is that not all options are feasible for all laryngectomees because of their reconstructed anatomy, cognitive abilities, access to medical care, etc.  For example, I have never met anyone with a gastric pull-up who has been successful at learning usable esophageal speech.  If there IS someone out there, I would like to know about it.  Consequently, I would not suggest to a patient who has had this procedure that esophageal speech is a viable option.

    I am of the opinion that we need to do whatever will enable the patient to rapidly regain speech.  This helps the laryngectomee get back to the business of living, back to work, to social interactions, feeling like a PERSON and not just a PATIENT, and that will help prevent depression.  Consequently, I tend to favor the use of the artificial larynx and TEP over esophageal speech, since typically these methods are more quickly learned.  That is not to say that I don't offer that as an option, because if esophageal speech is a physiological possibility for an individual, it can always be learned at a later time after speech via TEP or the artificial larynx is functional.

    It is not unusual, in the few days before surgery and immediately after surgery, for the patient to be totally overwhelmed with the entire situation.  First and foremost, the patient is trying to deal with the fact that they have cancer, then with other worries, some of which are concerns over potential loss of income, adjusting to the changes in physical appearance, caring for the stoma, and regaining their strength.  To expect them to make an informed decision about the communication options at that time may not be realistic. 

    But I firmly believe that medical professionals need to do what is necessary to get the patient back to their daily routine as soon as possible.  For that reason, a primary TEP, if it can be done without compromise of the surgical procedure, makes a lot of sense.  If that doesn't suit the patient's needs, it can be reversed at a later time after successful esophageal speech or use of the artificial larynx has developed.

    The beauty of the modern world is that you do have choices, and that one method doesn't prevent you from using another.  Many of you changed your primary method along the path of recovery, and that is testament to your strong determination to improve your own situation. 
(Carla can be reached at carlag@rosewood.his.ucsf.edu)

PAT W. SANDERS is a laryngectomee, editor of HeadLines, and Chair of the WW Communications and Publications Committee.

    Do you have a choice?  You may and you may not, and either answer can be right for you in your special circumstances.  Many otolaryngologists or SLPs make the "voice choice" by ordering the EL (electrolarynx) at the time of surgery, doing a primary TEP puncture during the original laryngectomy surgery, or scheduling esophageal speech lessons as soon as the laryngectomy is done while the patient is still in the hospital. 

    Your first prosthesis or electrolarynx will be ordered for you and the SLP will get the brand or type that they have found works well for most of their patients.  It could be that you will have a special circumstance and they will order something different. 

    Ordering for you is not necessarily bad since the doctor or SLP is accustomed to using equipment that has earned their confidence.  At that early time, we don't have any experience with use, durability, or effectiveness of speech equipment and can't offer much, if any, input on the subject.

     We may also have a problem with lack of time to study and learn. If we have the time, it is wonderful to meet other larys, be shown how equipment works, or listen to the difference in voices.  But, when I was told I was to have a complete laryngectomy, I had one week!  I barely had time to call family, make arrangements for someone to stay with me, make sure I had everything I would need in the house, pack for the hospital, get a magic slate, notepads and pencils to go with me.  I had to organize my caregivers, make sure someone could take care of my cats, that my clothes were clean and sheets changed.  I could fill this page with etc., etc. 

    My son made another choice for me.  He ordered a computer that he thought would be best for me and all he asked was the maximum I could spend so he could get the most for my money.  I could not tell him what brand I wanted any more than I could tell my SLP what EL to order.  I had no choice and would not have known how to make a decision.

    My TEP surgery was almost 18 months later, and they did talk with me about choices.  We had time for these discussions.  Actually my "team," with me being a member, decided to try something different from most and we tried the Bivona Colorado since I wore a stoma vent all the time anyway and the Colorado was all built together, vent and prosthesis.  It never worked for me so I went with an Inhealth prosthesis.  By then I could make a choice and could make a change.

    Unless we have a lot of time to educate ourselves, and other larys to advise us and discuss the pros and cons, many of us must, of necessity, accept the suggestions of the medical professionals.  We are not only paying them for their care, but for their knowledge, experience and advice.  We can always try other things and make changes later after we learn what we are doing.  It does not have to be a lifetime decision. 
(Pat can be reached at pat@choralmusic.com)



In case your Japanese is a little rusty, we offer the following translation:

New AL to Debut in Nashville
    Still another good reason to attend the International Association of Laryngectomees convention (and WebWhispers activities) in Nashville, Tennessee this coming August is it should be your first opportunity to see and try out a new Japanese artificial larynx, the "Your Tone."  Most of the device has a similar appearance to other ALs, but with one exception.  Attached to the body of the device is a dish-shaped control mechanism.  According to information on their website, this is a tonal (inflection) control mechanism which alters the pitch by detecting air movement through the stoma.  It is not clear whether this feature would be functional if the stoma were covered with an HME (Heat and Moisture Exchange filter), foam filter or cloth stoma cover.

Click on the "Play" button to the left to hear a sample of the Your Tone.  If you have a problem hearing it refer to the note below.  As you listen to the sample try to only pay attention to the tone variation rather than try to understand what is being said since the individual is speaking English with a heavy accent.  The quality of the recording is also not perfect, but it ought to give you an idea of the tone variation possible with this device.

    Developed as a joint project between the Hokkaido University and Densei, Inc. in Japan, the Your Tone weighs in at five and a half ounces and uses a nine volt battery.  Reasonably inexpensive rechargeable nine volt batteries and chargers are available anyplace.  The price of the unit was not available at press time.

Click on the button on the left to listen to the song.  A very unusual feature of this instrument is that there are five melodies programmed into the device.  Switch one on and sing, for example, "Happy Birthday" where the AL supplies the tune, and you supply the words.

    For further information check their website:
http://www2.snowman.ne.jp/~yourtone/mokuji/index_e.htm

Note: If you cannot play the sound files you may not have the software on your computer you need.  For those using computers which use the Windows operating program, you may click on the following LINK to obtain a free program (WinAmp) which will play sound files. http://www.winamp.com/getwinamp/overview/
If you have a Macintosh computer, e-mail the WebWhispers Journal editor and he can provide you with information on how to get the free software you need.

Chat Room Changes

    Founder and webmaster Dutch Helms announced recently that the WebWhispers group has "moved" to a new chat room.  Many members had experienced problems with the old one, and some had given up in frustration.  A chat room is an Internet location where a number of people can occupy one "room" at a time and "chat", by typing.  What you type appears on the screen of everyone in the room, and you see what they are writing.

    The new chat room should be easier to get into, and the program is more stable and less likely to cause your computer to lock up as happened before.  The chat room is open 24 hours per day for anyone interested in using it, although a scheduled WW session takes place at 3 p.m. Eastern Time on Sunday afternoons.  You get into the room by first registering and creating a chat room name.  We suggest something obvious like BonnieF or JoeTex so people are more likely to remember who you are.  You can register and create a chat room name by going to:
http://mercury.beseen.com/chat/rooms/u/11976/Login.html

Lary Laughs

Welcome New Members

   We welcome the 30 new WebWhispers members who joined us in February:

Jerry Alexander
Naples, FL
JAlexa6969@aol.com 		David Belik
Lincoln, NE
dbelik@unlserve.unl.edu 		Donald Blaisdell
Shortsville, NY
jedoblaisdell@rochester.rr.com
Dennis Buell
Petoskey, MI
dennysden@hotmail.com 		Mark Crowe
Royston, GA
MACROWE47@aol.com 		Dawn S. Douglas - Caregiver
Tobaccoville, NC
pdsd@alltel.net
Terry Desilets
Grapevine, TX
TerryTx@aol.com 		Adele Evans
Gaithersburg, MD
SueWilcom@aol.com 		Wilma Frazer
Arnhem, Netherlands
engelfra@introweb.nl
Angela Freeman - Caregiver
Williamsburg, KS
littlebitfreem@webtv.net 		Bert Graham
Calgary, AL, Canada
angraham@home.com  		Geraldine Grant
New York, NY
GerGr2@aol.com
Charles L. Hawkins
Signal Mountain, TN
CharlieHawkTN@aol.com 		Stanley J. Hesley
Oceanside, CA 
silentstan@aol.com 		Donald Kalkbrenner
Lawrenceville, GA
klkb@mindspring.com
Jim McDougall
Greenock, Scotland
j.mcdougall@talk21.com 		Ian Milne
Duncan, BC, Canada
ID.Milne@mbltd.com 		Robert Monti
Barnegat, NJ
rmonti@adelphia.net
Ida Moore
Ypsilanti, MI
Tennida68@aol.com 		Ethel Rodgers
Murphy, NC
WNCTPOT@aol.com 		William (Bill) Sheldon
Baltimore, MD
bshelj@yahoo.com
Kenneth Small
Syracuse, NY
Player257@aol.com 		Beth I. Solomon -SLP
Bethesda MD
bsolomon@mail.cc.nih.gov 		Roy Thompson
N. Charleston, SC
goldiet@awod.com
Althea Trottier
Ormond Beach, FL
AltheaTrottier@aol.com 		Polly Ubben - SLP
Lincoln, NE
PUbben@stez.org 		Barbara J. Vinson
Texas City, TX
vinbj38@houston.rr.com
Gerald (Jerry) Wickland
Rancho Santa Fe, CA
GWwickland@aol.com 		Susan Wilcom - Caregiver
Ijamsville, MD
SueWilcom@aol.com 		Maureen Williams
Fort Lauderdale, FL
Moempa@aol.com

As a charitable organization, as described in IRS § 501(c)(3), the
WebWhispers Nu-Voice Club
is eligible to receive tax-deductible contributions
 in accordance with IRS § 170.
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