September 2003

Name Of Column Author Title Article Type
Musings From The President      Murray Allan New Whispers On The Web. News & Events
VoicePoints Dr. Dan Kelly, Ph.D. Voice Prosthesis Leak Education-Med
Bits, Buts, & Bytes        Dutch Computer Tips Experiences
Guest Columnist Wilburn H.  Rivenbark, PhD Radiation-Induced Dry Mouth Education-Med
Handy Hints WW Members Hints For A Lary Experiences
Roger's Ramblings Roger Jordan  VA Medical Benefits Experiences
Welcome New Members Listing Welcome News & Events


                 Murray's Mumbles ... Musings from the President        
 
Greetings fellow Webbies and welcome to the all new Whispers on the Web.

     For some time your Executive Committee has discussed whether we should change the format of the WW Journal.  We felt that it was imperative to appeal to the vast diversity that are our members.  As laryngectomees, we span the whole spectrum from rich to poor, young to senior and PhD's to high school drop-outs.  We are butchers and bakers, physicians and dentists, fighter pilots, lawyers, realtors, morticians, farmers, sanitary engineers, police, fire and EMS personnel,  and ironically, a practicing Speech Pathologist who became a laryngectomee while a toddler at the tender age of three.   We are single, married, divorced and widowed. Most of us would never have encountered each other had we not enrolled in the "hole in the neck" club.  Granted, this wasn't by choice but I do believe that, by and large, we have gained a better insight of ourselves due to our surgery and the fellowship that we  have developed as a result.

     I would like to extend a hearty welcome to our new members and caregivers that joined us this month.  We know that there is a wealth of knowledge, here for the taking, all concerning laryngectomees.  This can be found at the various sections of the WebWhispers web site and on our mailing lists.  Good luck to you who are starting down the road on this new adventure and challenge in life.  Remember, there are a great many persons that have been in your situation and are now here to aid and assist new laryngectomees and caregivers.

     The Executive Committee would like to thank David Blevins, David6511@aol.com, for all of his great efforts as Editor of the WebWhispers Journal since 1999.  We trust that he will continue to be a contributor to Whispers on the Web as well as an active member of our mailing lists.

      If you wish to contribute an article please contact our Managing Editors, Pat Sanders or Dutch Helms, at:  Editor@webwhispers.org

     Best regards to all and again we hope you enjoy the new Whispers on the Web. Thank you.

Murray Allan, Argus@shaw.ca, President, WebWhispers


 VoicePoints
     coordinated by   Dr. Dan Kelly, Associate Professor ( dy_kelly@msn.com )
                                Department of Otolaryngology, Head & Neck Surgery
                                7700 University Court, Suite 3900, West Chester, OH  45069
[© 2003 Murray Allan & Dr. Dan Kelly, Ph.D. ]

    This is the first article to appear in the professional column of VoicePoints in the new Whispers on the Web Newsletter. I have asked Murray Allan, President of WebWhispers, to join me in telling his story about solving a recent prosthesis leak-around problem.

VOICE PROSTHESIS LEAK

    There are two forms of tracheoesophageal voice prosthesis leak- THROUGH and AROUND.  The problem of through voice prosthesis leaking is a common occurrence.  Most often prosthesis leaking is the result of Candida Albicans colonization invading the polymer surface of the prosthesis, resulting in eventual valve seat failure.  Candida is most often treated prophylactically using some form of antifungal agent such as Nystatin with the patient and by submerging and soaking patient changeable prostheses in hydrogen peroxide.  Inevitably, all prostheses will fail by leaking through,  whether from Candida colonization or simple mechanical failure.  Prosthesis failure results in leaking through the prosthesis and necessitates the need to change the prosthesis.  Obviously, the objective of good prosthesis management is to keep Candida at bay for as long as possible, thus reducing the need for replacement and the costs associated with the replacement.

    Passage of liquid around the shaft of the (leak around) voice prosthesis is a much less common form of tracheoesophageal voice prosthesis leaking.  This form of voice prosthesis leak in which the leaking occurs around the shaft of the prosthesis may be associated with existing or reoccurring disease, improper puncture placement, incorrectly fitted prosthesis, TEP tract trauma, radiation necrosis and is a signal of inappropriate tracheoesophageal puncture tract dilation.

    Working in a larger university cancer center where it is common to see patients with advanced cancers and multiple medical problems, I am occasionally asked to modify prostheses to stop leak-around problems.  When I first encountered a 2-centimeter diameter tract failure I immediately turned to my friend and colleague, Eric Blom, who taught me his technique of how to modify both the tracheal and esophageal flange of a voice prosthesis to stop the leak-around problem.  Over the years, I have modified prostheses for a number of patients with leak-around problems to simply stop aspiration and improve the quality of life or preserve use of tracheoesophageal voice.

    At the recent 43rd Annual IAL Meeting and Voice Institute held in Atlanta, Murray Allan related to me the difficulties he was having with leaking around his voice prosthesis.  Assuring me that he had worked with both his physician and SLP on this problem, he related the following information:  "Although I was having no problems with the type of prosthesis I was using, I agreed to become part of a test group to try a different brand prosthesis."  The speech valve was placed on a long blue plastic insertion device and inserted by the surgeon.  It was traumatic and very painful, with bleeding from the puncture tract.  I developed an infection two days later, which required treatment with antibiotics.  Since that time I continue to have leak around my prosthesis any time I drink liquids.  I was fortunate to speak with Dan Kelly at the convention as my surgeon and SLP had never heard that a flange could be added to a regular TEP valve."

    To make the modification, the esophageal flange of 20Fr voice prosthesis was modified as seen in Figure 1.  The modification requires access to both medical grade silicone (Pharmelast) and medical grade silicone adhesive (NuSil).  In the case of Murray Allan's prosthesis, a 20.320mm disc of 0.020mil Pharmelast was fabricated to slide over the shaft of the prosthesis and was secured to the existing esophageal side flange using medical grade silicone.  The adhesive was then cured for 72 hours at ambient temperature and humidity.  After curing, the prosthesis was then hand loaded into a 20Fr prosthesis gel-cap ready for insertion.  Murray reported that his leak-around problem has completely resolved with this simple modification.

Figure 1.

    Prosthesis modification should only be done by a properly trained professional who utilizes medical grade materials.  Those interested in learning more about the techniques of prosthesis modification should watch for a forthcoming article on this topic by Dr. Eric Blom.

Dan H. Kelly, Ph.D.
Associate Professor
University of Cincinnati Medical School
Department of Otolaryngology-Head & Neck Surgery
Barrett Cancer Center
Cincinnati, OH 45219

Murray Allan
President, WebWhispers
Richmond, BC, Canada

 

                          Dutch's Bits, Buts, & Bytes       

     I hope to use this monthly column to provide our members hints to Internet usage, hints to using our website and Listservs better, and perhaps to answer PC/technology/Internet questions that our members might have.  I would do this in the hope of making your entire Internet experience more rewarding, more educational and more fun.   OK .. so let's get started!

     (1)  Is the "Virus Alert" your aunt just sent you a valid one?  Is Microsoft really going to pay you $200 if you forward an Email for them to 10 of your friends?  Is the government really passing a law that would charge everyone 5 cents for every Email they send?  

     As  "participants" on the Internet, we are all possible "targets" for Email scams, practical jokes, and other such mischief.   The best way to arm yourself against these things is to be SMART!  Upon getting one of these "warnings" or "scams", BEFORE you react to it and send it on to YOUR family and friends, CHECK IT OUT!!   And this can be EASY!!

     One of the best places to go is to David Emery's "Urban Legends and Folklore" page at:
http://urbanlegends.miningco.com/library/blhoax.htm   This site will permit you to check out virtually ANY "alert", "warning", or possible "scam" that you might find in your Email Inbox.  A quick check with this web site can help you quickly determine what is valid and what is not ... AND could save you some embarrassment.   So, BEFORE you forward "bad information" to your family, friends, and acquaintances ... check it out!!   You'll be glad you did!

     (2)  What if you need help with a REAL VIRUS that has infected your computer?  Well, a good place to start might be: http://urbanlegends.miningco.com/cs/realviruses/index.htm   This site can direct you to the Symantec (Norton), McAfee, and CERT folks whose job it is to find and fight these viruses.  Of course, a good start on fighting Internet viruses is to make sure you are protected ... that is, that you have anti-virus software installed on your computer and that you keep it current.  A mere "ounce" of prevention is worth a "ton" of cure!!    So ... a word to the wise should be sufficient!!

     (3)  Thinking of buying a new PC, a new printer, a digital camera, new software?  Would you like a "one-stop" web site for the latest "tech news", hardware and software reviews, hardware and software price comparisons and shopping assistance, hottest downloads, etc.  Probably THE PREMIER SITE is "CNET" at: http://www.cnet.com/    I would highly recommend that you at least visit CNET sometime ... and take some time to browse around it.  I think you will be impressed by what you will find ... this web site is truly a GOLD MINE of great advice, accurate information, and invaluable assistance.

     (4)  What if you are going on vacation and want to suspend your WW Emails while you are gone?  What is the easiest way to do this?    EASY!!   From the Email address you use for WW, simply send a BLANK EMail to:  "webwhispers-vacation@mail-list.com".  This will immediately stop Emails from being sent to your address.  When you return from vacation and want to resume getting your WW Emails you simply repeat the process ... sending a BLANK Email to that same address.  That Email will then toggle you back onto normal distribution for your WW Emails.

     Do you have any Internet/PC/ListServ issues or questions you'd like addressed by this column?  If so, please drop me a line at: webmaster@webwhispers.org and I'll see what I can do to help out.  Any "hints" you would care to pass along would also be appreciated ... so please send them in ... if you have them.   Happy Surfing!

Dutch Helms, WebWhispers Webmaster


 Guest Columnist

Wilburn H. (Rick) Rivenbark, PhD, is a retired clinical psychologist and a former professor of psychology at the University of Alabama.  He has had two bouts with larynx cancer, the first, 30 years ago, was treated with radiation and the second, 20 years ago, with a partial laryngectomy.  His naso-pharyngeal cancer was discovered this year at his annual checkup.  He has written for HeadLines a number of times over the years and we welcome his contribution to Whispers on the Web.

PREVENTION AND TREATMENT OF RADIATION-INDUCED DRY MOUTH

    Recently I had to undergo radiation treatment for a cancer discovered in my naso-pharynx (the area where the nasal passages join the throat).  Even though I was to receive IMRT, a highly focused type of radiation designed to minimize radiation exposure to all areas except the tumor itself; I was still due to get a pretty heavy dose to my salivary glands.  It was explained to me that this could kill all or most of the saliva-producing cells and result in a permanent dry mouth.  In order to prevent this in so far as possible, my physician elected to irradiate one side of my face less intensely in order to try and retain some salivary function there.  To provide additional protection to the glands, she administered amifostine (am-i- fos'-teen) prior to each radiation treatment.

    Amifostine is in a class of drugs known as chemoprotectants; it protects the kidneys against the harmful effects of the cancer-fighting drug cisplatin in patients with ovarian cancer or lung cancer, and reduces the severe dry mouth caused by radiation treatment after surgery for head and neck cancer. In my case it was injected 30 minutes before each treatment.

    The most common side effect of amifostine is a decrease in blood pressure, which may start while the drug is being given and lasts about 6 minutes.  It can also cause nausea and an allergic type rash at the site of the injection, as well as other side effects.  In order to minimize these, I was put into a recliner during the injection and for the 30 minute wait afterwards.  My blood pressure was also checked.  In addition, I took an antihistimine and an anti-nausea medication about 45 minutes before going for my injection.  I was very fortunate in that my blood pressure did not drop as a result of the amifostine.  The preventive meds I took in advance kept me from having any side effects other than being drowsy for most of the day.  I am very sensitive to sedative effects, and both the antihistamine and anti-nausea drugs had sedating properties.

    I am now three months post radiation, and still have very minimal saliva production.  My physician says that there is still a good possibility of it getting better and has also put me on a medication called pilocarpine (pye-loe-kar'-peen), brand name Salagen.  This is a drug that stimulates the cells of the salivary glands, causing them to grow larger.  In this way, they can help increase saliva flow.  This drug is also used to treat dry eyes in certain cases.  Salagen is slow acting and the drug information sheet cautions that it may take 3 months to work.   I have been on it about 6 weeks so far. 

    I am optimistic that all the steps taken to keep my salivary glands working, at least at a partial level, will eventually pay off.  In the meantime, I keep a bottle of water handy at all times and sleep with a room humidifier going.

Rick Rivenbark


                               Hopefully Handy Hints

(1)  Much of the difficulty about stoma size could avoided if the lary keeps the stoma tube given to them in the hospital and they were discharged with.  Insert it periodically into the stoma for a period of time and the stoma  won't shrink. Putting it in at night usually does the trick and avoids having to undergo any "procedures". If one does undergo a procedure, insist that a tube be given you for future care. (Shared by SLP Frances Stark, Laryngectomee since '55)

(2)  Don't forget the two upcoming "laryngectomee conferences" taking place in September -  (a)  Comprehensive Interdisciplinary Conference: "From Initial Voice Evaluation to Laryngectomy Rehabilitation"; Thursday-Friday, September 18-19, 2003; Hotel Royal Plaza, Lake Buena Vista, Florida and (b) New Jersey 2003 Laryngectomee Conference, Saturday, September 20, 2003; New Jersey Hospital Association, 760 Alexander, Princeton, New Jersey; Hotel - Radisson Hotel, 4355 Route 1 at Ridge Road, Princeton, New Jersey.

(3) POLICE WHISTLE WITH ADAPTER:  For someone who spends a good bit of time out of doors in relatively desolate areas, or someone who is concerned about nighttime safety, a police whistle which has been modified by the attachment of a nipple from a baby's bottle which has been cut off at the small end and placed over the mouth part of the whistle. The larger part of the nipple can then be placed over the stoma and blown for a loud, piercing signal, without concern about a dead battery or other power source.

(4) WANT TO BE ABLE TO SMELL AND BLOW YOUR NOSE?:  "Rube" Goldberg did not think of everything!  Here is one device you should have at hand.  You can make it yourself in less than five minutes, and it will help you do several things you probably thought you would never do again....." This is an excellent article describing a device that enables you to do just that:  "A Simple Device for Smelling and Nose Blowing after Laryngectomy" by Zilpha T. Bosone, Ph.D. Speech-Language Pathologist, Veterans Administration Medical Center, Washington, D.C.

(5)  A FREE TEXT TO VOICE COMPUTER PROGRAM:  The first version of "SpeakEasy" was made available on the Internet in early 1995.  It is now called "E-triloquist?" and they are now on Version 5.0, having incorporated many changes suggested by users.  Version 5.0 includes a US English Speech Engine (Male or Female voice) as part of the package, so you don't have to purchase one separately.   You can check out this innovative program at: http://www.etriloquist.com/.

Many other ideas can be found through our web site Hints Index of separate 25 topics at:
   http://www.webwhispers.org/pages/hints/hintsindex.htm


 Roger's Ramblings
  
                                                                                                                   by Roger Jordan  (Laryngectomy - 1993)

VA MEDICAL BENEFITS

    Generally, veterans who have received an honorable or general discharge may qualify for Veteran?s Administration (VA) benefits, but in greater or lesser degree, depending on individual circumstances.  I will discuss here only the medical benefits available.

    To receive medical benefits from the VA, veterans must either be enrolled with the VA, have a service connected disability of 50% or more or want care only for a lesser, service connected, disability.  However, all veterans are urged to enroll right away as previous enrollment makes it easier to get an appointment and will ensure the proper priority of care.

    To enroll, a veteran must present his or her discharge papers, DD Form 214, to the VA.  Priorities for care are set by Congress in eight levels ranging from:

1. Veterans with a service connected disability of 50% or more,

2. Those with 30% to 40% service connected,

3. Purple Heart recipients and former POW's who were captives for at least 30 days,

4. Other veterans receiving aid and assistance from the VA,

5. Veterans unable to defray expenses of need care,

6. Certain other veterans NOT required to make co payments for treatment,

7. Non service connected and zero percent non compensable service connected disability with incomes
above the VA threshold and whose net worth exceeds $80,000 and who agree to pay co payments..

8. This category is not of interest as the VA will no longer enroll veterans in category 8.

    Co-payments for medication are currently set by Congress at $7 for a 30 day supply of each medication.  If a drug is prescribed for a lesser period of time, the $7 still applies.  For example an antibiotic prescribed for ten days would cost $7.  Note that not only prescription drugs but over the counter items, such as aspirin and cough medicine, are also covered.  Since these items are usually less than $7 for a 30 day supply, unless one is on non co-pay status, they should be obtained elsewhere.  For veterans that have a lot of medications, the co-payment is capped at $840 for calendar year 2003.  The cap amount may change from year to year.  In addition, there is ?no? co-pay for injections during the course of treatment, for medical supplies such as wipes or syringes, or for medicines prescribed for inpatient treatment.  Note also that prescription medication may be obtained from the VA pharmacy for medications prescribed by non VA physicians by having the need for the prescription reviewed by a VA physician.  In this way, nearly all veterans can get prescriptions filled for $7 for a 30 day supply.  Refills are filled by mail.  There is no co-payment for prosthetic devices prescribed by the VA, such as wheel chairs, electric scooters, adaptive driving equipment, or TEP valves, wipes and housings for laryngectomy patients.

    There are certain limits on frequency of refills of some items, such as one pair of glasses per year.  In addition to the above benefits, Vietnam era veterans who were "in country" for 30 days or more during certain dates, (not on a ship off shore or flying over, but on the ground), and who subsequently develop certain types of cancers, including cancer of the larynx, may be eligible for 100% service connected disability pension.  This is currently $2193 per month, tax free.  An additional $125 per month is payable for a spouse and $64 each for eligible children.

    Some veterans may also be eligible for reimbursement for travel costs to receive VA medical treatment.  The amount is currently 11 cents per mile, with a $3 deductible each way to a maximum deductible of $18 per month.  But be careful on this one as the payment must be collected within 30 days of the travel.  The VA puts out a booklet annually titled Federal Benefits for Veterans and Dependants, VA Pamphlet 80-03-1.  I urge all veterans to obtain a copy.  It includes the addresses and phone numbers of ALL VA medical facilities in the entire United States and territories.  The VA Health Benefits Service toll free number for information about eligibility for health care is 1-877-222-8387.   A VA benefits office may be reached at 1-800- 827-1000 from any place in the United States to determine eligibility.  You can also access the VA web site at: http://www.va.gov/  For further assistance, veterans may contact veteran?s service organizations which offer no cost assistance to veterans in obtaining benefits.  These include the American Legion, Disabled American Veterans, Veterans of Foreign Wars, etc.  If all else fails, and to sometimes speed up the process of a claim, I suggest you contact your own Congressman or Senator.  That is one of the things we pay them to do, and one that most do well.
 

   ListServ "Flame Warriors"   


                                                                                Terms of Importance
flame
1. n.   A hostile, often unprovoked, message directed at a participant of an internet discussion forum.  The content of the message typically disparages the intelligence, sanity, behavior,  knowledge, character, or ancestry of the recipient.
2. v.   The act of sending a hostile message on the internet.

flame warrior
1. n.   One who actively flames, or willingly participates in a flame war ... (Example Below) ...

THE EVIL CLOWN


Evil Clown is very quick with a joke, but his jests always have a barb. He has little patience for in-depth
discussions and will often disrupt exchanges between serious forum participants by introducing irrelevant
topics, fatuous quips, and offhand comments. His greatest thrill is to taunt and humiliate weaker or
more plodding Warriors with his snappy ripostes. When a strong Warrior finally corners him Evil Clown
will attempt to escape by accusing his attacker of having no sense of humor.
 

Above courtesy of Mike Reed
See more of his work at: http://www.winternet.com/~mikelr/flame1.html 
 
 

   Welcome To Our New Members   

     We welcome the 20 new members who joined us during August 2003:
 

Bent Axelson
N. Vancouver, BC, Canada
 
Nancy Bass
Cornville, AZ
 
Vijay Bathija
Bangalore, India
 
John Constable
Clintonville, WI
 
 Cathy Dand - Caregiver  
Apopka, FL
 
Joseph Dykman
 Cote St. Luc, Quebec, Canada   
 
Howard Eskildson
Rockville, MD
 
Lisbeth Friedman
Los Angeles, CA
 
Elladene Hall
Ft. Walton Beach, FL
 
Tony Keane
Bellingham, MA
 
Kathryn Kirwin
Potomac, MD
 
Danny Lee
Scotia, NY
 
Kathy Marsceau - SLP
Wausau,WI
 
Glenn Marshall
Wisconsin Rapids, WI
 
Edie Martin
Buford, GA
 
 Debby Moreland - Caregiver  
Lee's Summit, MO
 
Mary Ann Patricola
West Babylon, NY
 
Johnny Robertson
Hamilton, AL
 
Stan Wysocki
Katy, TX
John Zorescu
St. Louis, MO
 



  WebWhispers is an Internet-based laryngectomee support group.
  It is a member of the International Association of Laryngectomees.        
  The current officers are:
  Murray Allan..............................President
  Pat Sanders............V.P.-Web Information
  Terry Duga.........V.P.-Finance and Admin.
  Libby Fitzgerald.....V.P.-Member Services
  Dutch Helms...........................Webmaster
      

  WebWhispers welcomes all those diagnosed with cancer of the larynx or who
  have lost their voices for other reasons, their caregivers, friends and medical
  personnel.

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

  For complete information on membership, check the home page or contact
  Dutch Helms at:  webmaster@webwhispers.org  For questions about this
  publication, contact:  editor@webwhispers.org
                                                                                                                        


Disclaimer:
The information offered via the WebWhispers Nu-Voice Club and in
http://www.webwhispers.org is not intended as a substitute for professional
medical help or advice but is to be used only as an aid in
  understanding current medical knowledge.  A physician should always be   
consulted for any health problem or medical condition.





  © 2003 WebWhispers
Reprinting/Copying Instructions
can be found on our
WotW/Journal Page.