April 2013

 


 

 

Name Of Column Author Title Article Type
News Views Pat Sanders Our Project and One Special Letter News & Events
VoicePoints Sarah C Soluren, PT Neck/Shoulder Pain Education-Med
Between Friends Donna McGary Milestones Commentary
Speaking Out Members How do you Speak/Communicate Opinion
Travel With Larys Jack Henslee Songs Waiting To Be Sung Commentary
The Speechless Poet Len A Hynds Joeann's Story Prose & Poetry
Bits, Bytes & No Butts! Frank Klett A Brand Spanking New View Computers

 

 

INDEX AND LINKS TO EACH ISSUE MAY BE FOUND AT: http://webwhispers.org/news/WotWIndex.asp

COMMENT HERE
FEEDBACK

 

 

 

 

Our Project Update

 

We have had a large number of members that we never hear from, who are not on any list, for various reasons.  We recently decided it was time to contact them and see if they wished to be on one of our existing lists and if they want to be a member any longer.

We have been receiving messages from family members of WW members who passed away and we are putting them on our Memorial section on the website, along with planning to have them as part of our Memorial Ceremony at the WW Dinner.

We have a few who fussed at us and chose to leave or to stay anyway.

Mostly we are receiving messages from those who want to be back in touch and wrote some beautiful messages about what WW had done for them and how they did not want to lose touch.

And then there was this one, written to all of us and she referenced her blog with the one story - The Last of the Ladies.  I was impressed when I read that story and, after I cleared the tears, I wrote to Marusya to ask her permission to publish. She said she was honored and she sent three more of her blogs that had to do with her mother being a laryngectomee. You will find the links to them at the bottom of her letter.

 

Thank You and Goodbye
From: Dr. Marusya Bociurkiw

 

I'm asking to be taken off this list, as my mother Vera, a laryngectomee for 11 years, died two months ago. However I wanted to thank you all for your hard work in building a community amongst a diverse group of people linked only by a physical ailment.

I haven't used this listserv for some time, but in the 2 years after my mother's surgery I consulted it many times and was heartened to be accepted into your circle as a caregiver. The sense of solidarity and empathy I encountered there was extraordinary. My mother also sometimes asked me to consult WebWhispers about some question or other to do with stoma care, eating, swallowing, etc. and it was comforting to know we could connect with folks going through what she was going through.

My mother managed to have a fairly good quality of life until recently, when she was in and out of hospital. In the end, she died suddenly via heart attack, at age 86.

I wrote often about my mother and her struggles and triumphs as a laryngectomee, and I thought I'd share some of my stories, from my blog, Recipes for Trouble.


http://www.recipesfortrouble.com/2008/05/taste/
http://www.recipesfortrouble.com/2008/07/market-day/
http://www.recipesfortrouble.com/2010/12/ice-cream/

http://www.recipesfortrouble.com/2011/05/the-last-of-the-ladies/

Marusya

 

Enjoy,
Pat W Sanders
WebWhispers President

 

 

 

 

 


 


Neck & Shoulder Pain after Head & Neck Surgery

Sarah C Soluren, PT

MD Anderson

Houston, TX

 

Following a head and neck surgery, such as neck dissection, laryngectomy, and flap reconstruction, people often experience chronic difficulty with movements of the shoulder, neck, face, and jaw. The muscles, nerves, lymphatic and blood vessels of the head and neck region are usually manipulated or removed in an effort to eliminate unhealthy tissue. These same areas are also sometimes subjected to radiation, increasing the chronic ill-effects. Many times lymphedema, permanent muscle weakness, and scar tissue are secondary lifelong complications that affect a person’s neck and shoulder health in varying degrees.

Removal of lymphatic vessels systems or receiving radiation, both together or separately, give a risk for a condition called lymphedema. Lymphedema is a collection of lymph fluid in an area where there has been a disruption of the lymphatic drainage system. In most head and neck surgeries lymphatic vessel sections are removed due to cancer moving into these tissues. Our bodies will adapt to not having these lymph vessels, but the lymphatic drainage will be slower. The swelling can create discomfort and limit the range of motion at the neck and jaw. Certain activities improve our body’s ability to move lymph fluid throughout the tissues including diaphragmatic breathing, aerobic exercise, and stretching. Some activities also increase the risk of triggering an increased lymph fluid collection such as muscle strain or wound through the inflammation process. Following up with a certified lymphedema physical or occupational therapist after any surgery where the lymph system has been interrupted is the key to preventing or managing lymphedema.

The lymphatic vessels are also very close to important nerves that innervate and control our face, neck, and shoulder movements. Nerve manipulation and sometimes sacrifice of the facial or spinal accessory nerves during surgery are necessary to remove the cancerous tissue. The muscles of the face, neck, and shoulder complex are greatly affected after nerve trauma. The nerve injury is usually temporary depending on the amount of manipulation during the surgery. If they are said to be sacrificed then the nerve fiber was permanently damaged and permanent changes in the movements will happen. Nerves are the slowest healing property in the body up to one millimeter a day. A fracture to the bone will normally heal in six weeks. A nerve may take six weeks to years.

When they are traumatized they don’t communicate to the muscles of the neck and shoulder they innervate for normal muscle activation. So the muscles become limp. When they are in this state the muscles aren’t stabilizing the joints (scapulothoracic and glenohumeral) during static or dynamic movements, putting the joint at risk for further injury. When our scapular stabilizers (middle trapezius, rhomboids) are compromised, it is difficult to hold an erect posture that allows the proper shoulder retraction. Without proper retraction of the shoulder girdle, the glenohumeral joint cannot elevate the arm through full range of 180 degrees. Lifting the arm when the scapula is in a protracted (forward) position creates a bony block from the humerus hitting the acromion process not allowing full motion.

Glenohumeral subluxation also usually is mixed with the situation from the lack of muscle stabilization in the shoulder. The misalignment limits the ability to lift the arm through full shoulder range of motion. When a person attempts to use the arm repetitively during the time of weaknesses, further damage to the shoulder joint and rotator cuff will ensue. A similar analogy is driving a vehicle with the tires out of balance or alignment. The vehicle is subjected to an increased rate of wear and tear to the tread and surrounding structures.

The limited ability to stabilize the joints with motion also puts a structural strain on the neurovascular bundle of the shoulder and surrounding muscles creating a myofascial pain syndrome through the neck, shoulder, and arm. It may be sensed as a chronic dull radiating pain from neck to hand.

After months of our posture staying forward, our tissues adapt to the forces placed upon them. The muscles and fascia system of the upper back stay in a lengthened position and the tissues on the chest and neck region stay shortened. Now the posture is out of balance putting increased strain on the upper back, neck, and shoulder joints. If external beam radiation has been given at any point in time, the radiated areas will have more scar tissue placed on top of the normal scar tissue that resulted from the surgical process, further complicating the person’s ability to stretch the tight areas. The tissues, in the chest and neck region, develop contractures.

Scar tissue is created when the body attempts to heal itself after any trauma. During the healing process, a protein called fibrin is laid down in layers and usually ends up in a mangled mess. The knotty feeling of a scar months after the surgery is the result. The process of laying down scar tissue is carried out for approximately a year. Gentle range of motion helps the fibrin lay down in a more coordinated pattern, allowing for a better balanced and functional result.

External beam radiation also creates scar tissue, but it doesn’t stop after the normal healing timeline of one year. Radiation microscopically damages the DNA and the normal cellular processes are permanently altered. So instead of fibrin having a timeline and finishing in a year, it continues for the rest of the person’s life. The fibrin is laid down inside and outside the blood vessels, bones, tendons, ligaments, and the nerves. The resultant condition is called radiation fibrosis syndrome (RFS). It can occur in a few weeks or months after the radiation treatment. The intensity of the radiation fibrosis (RF) depends on the area, the amount and duration of the radiation itself. Other factors also contribute to the amount of dysfunction created, such as age and medical comorbidities. Difficulty with speech and swallowing, trismus (decreased mouth opening), cervical dystonia (neck spasms, pain, and tightness), and facial lymphedema (swelling) are common radiation-induced complications.

Many factors contribute to neck and shoulder pain after a surgery in the neck region. Education and an active part in the management process after a surgery of the head and neck is important to minimizing the resulting discomfort. Contact your physical and/or occupational therapist to help you gather all the tools you need to manage the chronic changes.

 



 
 

 

 

 

 

 

 

MILESTONES


March is an especially unpredictable month here in northern New England. This year on March 19th we had a late winter storm which dumped another 15 inches of snow; last year on the 22th my grand-daughter was playing in her pool out on the deck. What makes it all the more interesting, of course, is that March 20th is the official first day of spring.

It is also my birthday and this year I turned 60. I am at that awkward stage. Neither young enough nor old enough to truly enjoy these milestones! My father turned 89 in February and he is quite proud of that fact. And his great-grand-daughter whose birthday is March 16th will also tell you delightedly, “I am one, two, free, four” as she counts out with her fingers for emphasis. I am not quite as thrilled.

March also is my anniversary. I spent my 47th birthday in the hospital awaiting biopsy results from a nasty tumor growing underneath my vocal cords and blocking my trachea. I was scheduled for a “de-bulking” surgery the next day to relieve my breathing issues while we figured out the next step. I had no idea what lay ahead. I wasn’t afraid at that point and after the successful surgery to free up my airway I was ecstatic. I was convinced this would be merely a bump in the road. I was mistaken.

The following March I also spent 3 days in the ICU as my airway closed up from radiation necrosis and scarring. After two more episodes in the ICU I had a tracheotomy that June and eventually my airway and vocal cords became non-functional and I became for all intents and purposes a laryngectomee.

Over the next two years I had multiple procedures to remove the scar tissue and try to gain some vocal cord use. I took massive amounts of prednisone in the process with diminishing results. I celebrated my 50th birthday by visiting my best friend and parents in Florida. I had regained some of my strength, looked pretty good and could talk by occluding. It was my last hurrah with that voice.

So it is not without trepidation I face March these days but I still love it. I love that one day we have snow and the next day it is 40 degrees and we are awash in the smell and squish of mud which more truly signals spring in Maine than any date. I love the fact that my grand-daughter’s birthday is so close to mine she thinks we celebrate it together and that it is a not just a day but a week at least.

She got out her notebook the other day and asked me what I wanted for my birthday so she could make a list. I told her a facelift, new teeth and a million dollars. She solemnly “wrote” it all down. Then she asked, “Don’t you think you might want a Rapuntzel game, too?”

I didn’t get the facelift or teeth or million bucks but I did get some very special gifts. We had a family party on the 17th since so many McGary girls have March birthdays. My parents had my mother and my nana’s engagement diamonds made into earrings for me. My first diamonds and I wear them now proudly. Then my little girls Kayleigh and Kiera brought me up a little seeding garden for us to plant in the spring with vegetables and flowers.

March is redeemed. Maybe 60 will be okay after all.

 


 

 

 

 


How do you speak/communicate?

Why did you choose that method, and how would you rate your learning process and ability?

 


 

Marian Cure, Cedar Creek Lake. Texas - 2009

Writing on a child's toy was my first way of communication.

The EL was very easy for me due to no radiation. I broke the ice at a family birthday by singing happy birthday with EL alone. Family roared with delight and awkwardness was over.

I got my TEP in about three months and have no trouble voicing with it, again, probably due to no radiation or chemo. My Chondro Sarcoma in the Thyroid cartilage can only be addressed with wide margins; therefore,the reason for taking the voice box.

I tell new larys that our surgeries and treatment are all different. Just reading WW tells us that. I'm in awe of people who have to deal with radiation and chemo damage. You are inspirational to me!

 


 

Robert Legros, Gatineau, Québec, Canada -  April 2011

(Gatineau is situated across the Ottawa river from Ottawa, Canada's Capital City).

This is my first submission to Webwhispers since I became a member of Webwhispers in January 2012. Surfing Webwhispers has been an inspiration, and I learn something new just about every day.

Laryngectomy! Esophageal speech! Electro-larynx! T.E.P.! Until January 2011, despite being very well educated and very well read, I had never encountered those words. When I first visited an E.N.T. doctor in January 2011, because of a raspy voice that was not getting any better, I never expected to be told I had a cancer on my vocal cords. Impossible said I; I have never smoked in my life. Unfortunately, it was true, as confirmed by a biopsy a week later.

At first, the oncologist thought that radiation therapy and chemotherapy would be sufficient, so we proceeded with dental treatments and the usual preparatory steps. However, another scan revealed that the cancer had spread to the cartilage of the larynx, and surgery was recommended. I had a total laryngectomy and neck dissection on April 5th, 2011. Three days later, I underwent an emergency operation for a carotid gone wild, which left me in the Intensive Care Unit for another eight days. This was followed by several operations to close stubborn fistulas, and finally, on 14 July, a marathon operation of nearly 12 hours, which included borrowing skin, arteries and veins from various body parts. Success at last, and I left the hospital on August 3rd.

Up to this point and for another month, I used a Cooper-Rand to communicate, plus writing and gesticulating. Then, on a regular visit to my surgeon, I enquired about a T.E.P. He told me to forget about it, because he was not willing to risk any further surgery, however minor, at this time. Maybe after several months said he.

I contacted the S.L.P. and asked about esophageal speech. We discussed it at length, and we agreed to start the following week, in early October 2011. In the meantime, she loaned me a Servox. This was a great improvement over the Cooper-Rand, but I did not like it.

The first lesson consisted of learning to swallow air and speak syllables. I progressed very quickly, and after the second session, I could utter short sentences. I practiced at home, following the instructions that were given to me, with my ever patient wife listening and encouraging me. I practiced for short periods, five to ten minutes, several times a day. I must emphasize the importance of a sound training programme. After one week, I could carry out a conversation. I had another six sessions with my S.L.P. after which she said I was on my own. I haven't shut up since, and I continue to practice. I even bought a Dictaphone so I could play back my exercises. A worthwhile investment.

Actually, I did not choose ES; I did it by default. However, since I have been a member of Webwhispers and have had the occasion to read about TEP user problems, I have decided to stay with ES. As all ES users know, background noise is our biggest enemy. To counter this problem, I acquired a TrueTone. It helps a great deal in many situations, such as restaurants, but it does have limitations, again when background noise is too severe. All in all, I am very satisfied. ES has allowed me to resume all my previous activities. My family and my friends have been very supportive.

 


 


Harry Wintemberg, Ormond Beach, Florida - Class 1982

In 1982 there were really only two principal choices for speech method (electrolarnyx or esophageal)....the TEP procedure was barely beyond the experimental stage. I had the good fortune of becoming a student of a speech pathologist who wrote her PHD thesis on esophageal form of speaking.

I was not attracted to the inconvenience of a mechanical instrument with its synthesized sound and found after about 2 months of intensive training and extensive home practice I was becoming quite comfortable with ES. After 5 months my SLP suggested I join Toastmasters to help "polish" my level of success and, then, there was absolutely no reason to consider any other method.




 

John Haedtler, New Mexico, USA - December 2001

I had a T4 tumor on my left vocal cord. Between myself, my ENT Doctor and my SLP we decided on the TEP for my form of speech post surgery. Prior to my Laryngectomy my Doctor told me that if he felt that the tissue was satisfactory for the use of a TEP then he would do the puncture at the same time as the Laryngectomy. His feelings where that no patient needs to go through 2 operations, if it was not necessary. I had my total Laryngectomy surgery on December 12th 2001 and my Radiation treatments post op, so I was able to heal very fast. I only spent 6 days in the hospital after my Laryngectomy.


The day I was sent home the Doctor told me not to try to eat any solid foods for at least 2 weeks and no flying! I almost started to laugh! Before he came to my room I was starving. So I went down to the cafeteria and had a build your own Burrito and 2 candy bars. And I knew that my boss was coming to pick me up and fly me home!


I was also told not to try to speak for at least 2 weeks also! Well, I have never been one to do as I was told. So my second day home I went to Radio Shack and bought a little pocket tape recorder. Then I tried to read out loud. When I played back the recording I about fell over. I was not able to understand most of what I said. So I spent the next week reading and recording.


On my 2 week check up my ENT asked me to try to say AAHH. I did and he said that sounded very good and then to try to say my name, so I did, then said "What else do you want me to say?". My Doctor just looked at my SLP and she was looking at the Doctor in amazement. Then my Doctor said that he has never heard a Laryngectomee speak that well for the first time trying to speak. My boss started to laugh and said did you really think he was going to be quiet for 2 weeks??


I feel that I had very little problems going through the radiation treatments. But I was not pushing myself much during the treatments. I had them done within 35 miles of my house so I was able to just drive home and rest after the treatments. I used a ton of Biofine on my neck and would drink Aloe vera in the brown bottle when my throat was sore.


So all in all, I feel I was very fortunate to have gone through the major surgery with very little problems. And so far so good! Cancer free for just over 11 years now!


And I would like to thank all of the Great people at the University of New Mexico Hospital for everything they did for me during my surgeries and all of my follow ups. I could not have asked for better people to take care of my cancer problems. They are the reason that I volunteer to speak to new patients there and help at the university when they are teaching voice restoration to new SLP's.

 


 

Richard Crum, Jeffersonville IN - 1988

Consultant for Inhealth

After my surgery in July of 1988, I mastered the use of an electrolarynx. I then started work on esophageal speech and within three weeks I could communicate well enough that I stopped using the electrolarynx. In October of 1988, I had the TEP procedure done and started the learning process of hands free speech.

It took me about a year to learn how to keep a seal with the hands free device. I have been using this method of speech since then. It has become second nature for me to put on the housing each morning. I still have fair esophageal speech but prefer using my hands free TEP.

 


 

Joseph Evans, PA - Nov 2011

Thanks to my truly wonderful therapist (Lindsay Marchinski) at Moss rehab in Phila. I have been coached, cajoled, and taught to speak with a TruTone EL. Lindsay arranged for me to try a couple of different EL's. I liked the TruTone better than the others and she helped me get it at no cost to me. She also introduced me to and arranged my prescription for HME filters and base plates. I recently set up another round of appointments with her with the intention of getting a TEP device.

When using my EL, I'm not embarrassed nor do I have any difficulty communicating with almost anyone. Loud ambient noises sometimes make it difficult for me to be understood. However, I realize that's part of "the deal" when using an EL.

I'm having to practice speech again because I recently got dentures. I lost my teeth because of radiation therapy. My family, friends and girlfriend all tell me I sound different with dentures. They also say the dentures make me look younger (hooray!). I'm now looking forward to and wondering what speech will be like with a TEP.

I'll know soon enough.
From the desk of "The Outlaw"


 


 

Maggie Scott - Dauphin, Manitoba, Canada - October 2012

(I had adenoid cystic carcinoma vocal cords)

 

I have a TEP which was done at the time of my Laryngectomy. I think because I was otherwise healthy and had what they called a 'fresh neck' (no surgery or radiation prior) they decided for me, it would be my best option. I use a housing and HME filter presently. I learned to speak fairly quickly. I practiced by reading aloud to my dog.


I just finished radiation about a month ago and I am now trying 'hands-free' with my housings. I am going to be fitted for a button next week and see how that goes. I am a 47 year old female and worked as a nurse full-time prior to my surgery, so I think that's why the surgeon and SLP thought the hands free would be a good option for me. I've never used an EL but I have one (it is supplied to each Laryngectomee) and I didn't know anything about esophageal speech really. I'm happy with this TEP choice. It's worked well for me so far and I hope to master the 'hands-free' sometime in the future.

Love this Web site!! The people on it have helped me so much. Thank you.

 


 

 

Elizabeth Finchem, Tucson, AZ - October 1978

Esophageal speech has been my only means of speech for 33 years. Much like my first voice it is effortless, maintenance free, noninvasive, and I own it.



 

 

Lynn Foti, Akron, Ohio - May 2009

As a result of radiation damage, my throat was in shreds when the doctor did my laryngectomy surgery. A few weeks later I had to have an esophagus built from a section of my inner forearm. It was months before I was able to take a sip of water. Before I could eat, I had to have dilations. About 7 and a half months after the laryngectomy, I was struggling with not being able to make any sound. I had no idea how to produce esophageal speech and would write long letters to my ENT every visit with a slew of questions, the primary one being when would I talk? I had tried an electrolarynx, but it was really terrible. I couldn't get a sweet spot, and the mouth adapter didn't produce well for me either. I have been a motor mouth my entire life, and this was awful for me, adding to my depression. Finally, the ENT said it was time to try the TEP I was so excited about moving forward in my recovery. My treatment was at University Hospital in Cleveland Ohio, and they are the cream of the crop in medical care for Head and Neck issues. The TEP puncture and placement of the prosthesis was done in one afternoon,with minor discomfort, and when I left there, I was a happy woman!

I cannot say enough about how great it is to be able to speak again. Other than some issues with using the auto answering phone business, I tell people that I have a prosthesis and most understand me just fine. My SLP is fabulous, I usually have to get it changed every 4 to 6 months, and life is good. I have a life, that is something I wasn't sure about. I can't yell, but I can make myself be heard!  As my son says...."mom, all you have to do is have that look on your face, and everybody knows to shut up and listen". What can I say, Sicilian, Irish, and Cherokee Indian is a pretty hardy combination! Love this site, wouldn't want to be without it.

Thanks and God bless to all of you Webbies.

 


 

Loyd Enochs, Evansville, IN (home), Denver, CO (work) - December 2009

I speak with a TEP. The decision was made by my surgeon: he thought I would be a good candidate and (according to him), TEP is the best method if the radiated skin can hold the prosthetic. Turned out, he was correct. He allowed the laryngectomy site heal from Christmas to Memorial Day before he did the puncture and waited again until July 2nd to have the prosthetic installed. When it was installed, I could speak instantly with no training (and haven't stopped since according to my wife!).

I currently work full time as a software consultant and am at my third different client since Feb 2012. I travel every week and live out of a suitcase. About the only time I have trouble being understood is when background noise levels are high (airplane, factory floor) or using a teleconference device in a conference room. Other than that, no problems.

 


 

Dave Aitchison, Northern Ontario - April 2012

I was fortunate, or unfortunate, enough to have a bit of time to consider how I was going to communicate. About a month before my laryengectomy, I had a tracheotomy, was not able to speak. Once I knew for certain that I would lose my larynx, I researched the options. I decided to try and learn esophageal speech because my wife and myself travel internationally and having a TEP with all the issues seemed like quite a limiter to our life style. I started researching how to learn ES and found out about Edmund Lauder's book so I bought a copy and started trying to speak. I found out about Elizabeth Finchem through Webwhispers and she coached me through the learning process using Skype - she lives in Tucson and I live in Northern Ontario. I cannot begin to describe how excited I was to be able to say 'scotch tape'. My learning was interrupted by radiation treatments so I used an borrowed electrolarynx during that period but was determined to master ES. About 6 months after my surgery and countless hours of practise I was comfortable using ES. I considered purchasing an EL as a back up but, at this point, feel that would be admitting defeat.

I have been using ES for almost a year now. I have a portable amplifier that I use freely. I can say anything in most settings. Of course, noisy environments are still a problem but we still go to dances and restaurants as I have found that, when people realize I am different, they listen more attentively and will ask me to repeat if they do not understand.

 



Louis Trammell, Chicago, IL - Sept 2009

While I think the world of the surgeon who preformed my Lary, I just don't remember us talking about what method of speech I would use. In fact the surgeon got mad because I went to the speech dept. on my own asking about my options. Of course, they wouldn't tell me much, although they did advise me against the Ultra Voice.

What I remember the most was that we argued a lot and we were doing it an hour before the surgery, so I said, "We'll finish this after the surger!y" It was my way of letting her know I had faith in her.


I didn't voice until about 6 weeks after my surgery because I stayed in the hospital 3 weeks due to a fistula leakage and, then, in my second visit after leaving the hospital my surgeon asked if I would like to say something to her. She told me to breathe in, put my finger over the stoma and say whatever I wanted to say. So my first words were, "Thank you."  We did some numbers and other words but she told me only one hour of talk per day for the first few weeks. Went back to work 10 weeks later where I used to talk a lot but she gave me a letter limiting my talking so that was a nice touch for my employer.


My voice is on the soft side so I may start using a amplfier but, even with it being soft, I still do all right at work and in our group meetings.

 

 


 

Tom Wilson, Indianapolis, IN - Feb 2012

 

I suspect, like many who responded to this question, that their method of speech was not chosen by them but rather for them. Or at least that was my case in the beginning.

During my total laryngectomy, the surgeon made a tracheal esophageal puncture and installed a prosthesis. I was vaguely aware that he was going to do this, but I had very little knowledge as to what it was all about. (I actually thought it was the prosthesis that created the sound for speech rather than my esophagus for over a month after surgery.) Prior to surgery, other options for speech were never discussed with me. It was only after surgery when I started reading and doing some research on laryngectomies that I learned of other methods of speech. I also learned that some surgeons might have been reluctant to install a TEP during my total surgery, since I had just completed 34 radiation treatments seven months prior.

All went reasonably well for about six months until my TEP started "turning." It stayed in relatively the same place but rotated so that it was on an angle. It still worked, but cleaning was difficult, and I was unable to use an HME and lary button because it now pushed on the prosthesis when I pressed the HME to occlude. My surgeon didn't seem concerned, saying, "Can you eat? Can you swallow? Can you talk?" He said that if the answer was yes, that it wasn't anything that required immediate attention. I convinced him that I missed using my button with the HME, so surgery was scheduled for about three weeks later. During that time the prosthesis continued to rotate until the flange on the esophageal side broke through the wall into the trachea. My surgery date was moved up to two days later. My surgeon removed the prosthesis, put in a suture to assist the fistula in closing and during the same operation installed another TEP lower in my stoma. This was on October 4, 2012.

Unfortunately, the fistula from the original TEP site did not completely heal shut. Even though neither my surgeon nor my SLP at the time suggested it, I used an EL after the operation (which I learned later was much better in assisting a fistula to heal than using a TEP immediately after surgery). After two months the fistula was still leaking even though my surgeon, after a rushed swallow test, told me it had healed.

I (finally) found another surgeon who confirmed that there was a leak. He tried an in-office procedure that wasn't successful, so on February 14, 2013, a day short of my one year anniversary, I had surgery to remove the prosthesis that the first surgeon had installed during the last operation (which was never used and nearly impossible to clean), and work done on the original fistula to assist in its closing. I was put on a nasal/gastric feeding tube for two weeks and instructed to come back at that time to have it removed. Finally good news. Both fistulas healed!

I had originally thought that after things healed up I'd have another TEP put in (in a more convenient location). My (new) surgeon agreed that it would be possible if that's what I wanted to do. But after giving it some thought, I realized that now it was my turn to decide how I wanted to speak. I realized that all the "cool kids" had TEPs, but was that the best choice for me? If I went the TEP route, there wasn't any guarantee that it wouldn't be rejected again, leaving me with a fistula that wouldn't heal and requiring use of a feeding tube one more time. I had to decide if it was worth going through all that again. The answer for me was no. During the time I was using the EL, I found that fortunately I had a "sweet spot" and that I had become a fairly good EL speaker also. So, for now, I will continue to use my Electro-Larynge and I am looking into studying ES as well. And even though I would not have chosen this experience, it gave me a perspective on speech alternatives that I would never have had.

 


 

Michael McQuade, Australia -

I use the electro larynx to speak with. I have been a laryngectomee for over eight years so I can use the EL all right. I was fitted with the TEP after the operation but did not muster its use being only able to say a few words at a time. The valve became dislodged and, if I wished to have it replaced, I would have had to undergo surgery as the puncture had sealed up. As I did not use the TEP very wel,l I decided to continue using the EL.

I am from Australia and the Government pays for the EL and gives a new one every 5 years, so we do not bear any cost. My experience is the EL still works after 5 years so I just keep the old one as a spare.

Most Australians use the TEP but I find the El very good and it enables me to keep my stoma clear and clean far easier then when the TEP was there.


 


 

Naomi Arnold, wife of Neil Arnold - August 2011

 

I'm writing for my husband, Neil Arnold.. In addition to his laryngectomy, Neil also had a glossectomy.

He has not had success with using an electrolarynx so he got a portable Dynavox, a type and talk device. The big advantage of the Dynavox is it comes with a lot of programmed words and phrases and you can program in a lot of added information. For example, he has his medical history programmed in, his list of meds, name/address/phone number, email address and birthdate.

He has phrases he uses frequently for playing bridge and other games, ordering in restaurants, going to the bank, etc. It is quite sophisticated. He has even used it to make phone calls. He also uses different apps on his iPhone and the iPad for conversation, occasionally writes what he wants to say, uses finger spelling, and charades.

Using all of these methods, he is able to get his information across. The biggest problem is the time delay while he is typing to have it spoken for him. Some people are very impatient and talk around him or talk to me rather than waiting for him to respond but most people wait for him to type his questions or to respond. The most important part is letting him be independent.

 


 

Rick Stratton, Southern Illinois - August 2011

I had my surgery August 3, 2011, at St. John's in Springfield, IL. I am 61 years old. I am the pastor of the Salem Assembly of God church in Salem, IL. I am also an Executive Presbyter of the Illinois District Council of the Assemblies of God.

I speak with a TEP and use a hands free valve but at times use the HME filter/button when I speak. Sometimes I use the Lary button to hold the valve but also the stick-on as well. I do use skin glue when I use the stick-on.

I speak every Sunday and have other speaking responsiblities as well. My voice is fairly clear and understandable. I chose this method because it is more natural sounding and I can have inflection of my voice when I speak.

I would rate my learning process and ability to speak over 90% if not higher. I think the fact that I do public speaking has helped that tremendously.

Have a blessed day.

 


 

Len Shacklock, Brighton. Ontario. Canada
4 weeks radiation Dec2002/Jan2003 - One vocal cord removed Dec 2003 -Total Laryngectomy June 2004

Greetings! I am 91 years young.
Had TE puncture during surgery and tried TEP speech for 4-5 months. Finally gave up after fitting and leakage problems. Candida was very virile and a problem in spite of medications. Artificial larynx was my solution.

I chose the Nu-Vois I. Made by Mountain Precision. Boise ID. Over the last 9 years I have not upgraded or changed my model. I have had three occasions for service, once from water immersion, twice due to diaphragm renewal. Each time the turnaround was immediate and no charges were involved. What more could one ask?


As far as the learning process....... Due to discomfort after surgery I found the first few weeks of AL frustrating. Then locating the “sweet spot” eliminating “buzzing” took a little patience. Then it was practice and more practice. The WW Library is a great source of guidance for all of us. Three things I find to be most important are:

1) Make sure the person is looking at you,

2) Talk at a “normal” rate, maybe just a very little slower, enunciate your words more than usual

3) Press and release the button on your AL between your phrases, never allow your sentences to be too long.

Rate my ability? I enjoy being told, “I understand you much better then others I know that use one of those things!!"


My thanks to all the volunteers that make WebWhispers the success it is. To any member who has not made a donation to help with the expenses........May I suggest you do so!

 


 

Jim Fohey, Oscoda, MI - 1994

I knew I would have a Servox as I had seen a couple of larys at my restaurant and I did not know about a TEP or ES. Three days after my operation an SLP came in with a Servox gave me about 15 minutes instruction and said give it a try and I’ll be back, I thought she would be back in an hour but two days later she showed up. She asked me to speak, said "Good, it will get better with the reduction of swelling." Then she said to read the newspaper out loud with the Servox it will help.

Other than some of the nurses wondering if I had slipped over the edge when they walked by the room it did help, it also helped that I did not share a room. Once home I purchased a new Servox. Later I had a TEP done and it was wonderful. I could talk right from the first try then one night I coughed out the insert and never got it back in correctly and my throat healed over so out it came and I just never had another puncture and I have been a lary for 18 years still have my first Servox and a couple of back ups.

 


 

Jim Olcott, Bakersfield, Ca. - 2010

Before my surgery, I, like most of us, was very concerned about being able to communicate after a Laryngectomy. I was told that I might be a candidate for a TEP and voice prothesis. I really didn't understand what that meant so I delved into WebWhispers and read everything I could find on the subject. I listened to the samples of TEP speech and hoped and prayed that I would be able to communicate as well as those speakers. I had my surgery in June of 2010 and used an EL for 6 months. While I was grateful to be able to communicate with the EL, I really wanted to have the clearer voice that I had heard on the samples.

I had the TEP procedure in January of 2011 and after healing, the SLP installed a Provox NID. I was able to voice immediately, though not well. I was thrilled. With practice, I am able to speak very clearly and it is now second nature. I keep my EL for backup but have not needed it yet. My friends tell me that my voice is almost identical to my original voice. I am so grateful to be able to communicate in this manner.


Thanks for letting me share my experience.

 


 

Thank you for your submissions. Edits are used for length, clarity and to keep comments on subject of the month. 

Staff of Speaking Out

 

 


 

 

 

First IAL

 

Last month‘s article by Donna in “Between Friends” rekindled some fond memories of my first IAL meeting that I’d like to share with all of you. I had my total laryngectomy in 1988 after 9 yrs. with a partial laryngectomy. I had attended a California Association of Laryngectomees meeting in Sacramento in 1990. The Sacramento meeting was very informative but there were probably no more than 25-30 of us there. Registration was “at the door” and in a hallway. The conference took place all in a fairly small conference room and the only vendor there was a young Jim Lauder with a single table and a book to sell. He may have had some audio tapes also but I don’t recall them. While at that meeting I learned about IAL meetings but based on the Sacramento experience I wasn’t inclined to spend a lot of money traveling to another meeting to hear the same thing from different people.


I changed my mind in 1991 and decided to make the trip to remote, never before heard of, Winnipeg, Canada. I was already trying to help others learn esophageal speech so I signed up for the Voice Institute to be a laryngectomee trainee and was accepted. (Back in those days you had to submit an audio tape for evaluation to attend as a trainee instead of as a pupil or VIP)


The entire IAL program was different back then. SLP’s and trainees reported on Sunday and the VIPs reported on Monday. Everyone was divided into teams that consisted of SLPs, trainees and VIPs, and each team was assigned a team leader. My team leader was Lisa Proper a well-known contributor to WW, the Florida Association, and of course the IAL. Laurie Gallant, from Toronto, was also on my team and he is the only laryngectomee that I recall from my team. To this day we still get together at IAL meetings for a mini class reunion. On Wednesday the Annual Meeting people would arrive and they started their own program. (In some years the VI and AM were actually conducted at different locations in the same city. Usually when the VI was held at a university and everyone stayed in dorms.)


Using a current phrase, “back in the day”, the VI was a pretty tough course. We would start at 8:00 AM and some nights not finish until after 9:00 PM. For the most part we had separate tracks for the SLPs and trainees while the VIPs studied something different. Some of the classes were co-mingled and we worked on speech with the VIPs several times a day in their rooms. We usually had group meetings in the evening and always had a mandatory sing-a-long. Talk about pressure…. You worked your butt off all day long hoping you could sing at least one verse that night! Oh, and by the way, TEP was very new and everything was geared toward ES! Help was given to AL speakers but the focus was on ES.


For me and many others this was a life changing event. I remember well at one session where we sat in awe as we listened to a lady tell us about her experience. We knew the voice wasn’t “normal” and we quietly whispered among yourselves … how is she talking? It sounded like very good ES but she didn’t seem to be talking any air injections and everything was effortless. That was my first meeting with Mary Jane Renner and her wonderful TEP speech. I was also inspired by the many other staff volunteers that I met and stayed in contact with through the years. These are people like Lisa Proper, Susan Reeves, Jessie Hart, Shirley Salmon, Zilpha Bosone and so many others that have dedicated a large part of their lives to helping others and making our lives so much better. Sadly, through the years many volunteers have passed but I have been fortunate to have met and worked with many of them. Some like Lennie Librizzi and George Ackerman I met at my first IAL meeting. Two men that gave so much to help us Larys!


I could ramble on and on about what you may see and learn at an IAL meeting, the friends for life that you may meet, and the very possible and positive effect it may have on you. But instead I would like to share something I started writing as I sat in the Winnipeg airport waiting for my plane. I finished it on the plane before I arrived back in California; a work of tearful joy that I experienced from my first IAL. In 1995 the IAL used the title of that poem as their thyme for the San Francisco Voice Institute and Annual Meeting.


Songs Waiting To Be Sung

 

Like the endless tide they arrive,

Survivors of a cruel devastating disease,

Victims of despair and uncertainty.

Hearts once filled with joy

Quiver at thoughts of tomorrow.

Yesterday was an endless delight,

Today... a nightmare of doubt

Fueled by fear of the unknown.

Each heart beats a steady rhythm,

Searching for a song, that's waiting to be sung.

 

They march to some distant tune,

Heard by many as sorrowful blues.

Crusaders lead marches with blaring bugles,

To fight a gallant battle

Against the destruction of flesh and spirit.

Others write verse, embracing life's dream,

While some wait for the inevitable, whatever it is.

Each story has a familiar tune,

But the melody is seldom the same.

So many songs, waiting to be sung.

 

The horizon frames a vivid red sun

So deceiving without time and direction.

Does it rise with the promise of tomorrow,

Or linger with the light of yesterday's dream ?

Drifting clouds mask its features,

Gently pushed by winds of uncertainty.

Soft shadows float slowly by

Like gentle lullabies caressing the soul....

Or the dark silent rage before the storm.

Inside each of us is a song, waiting to be sung.

 

Across the land they unite in support,

Resurrecting the music of life.

Joyous chords explode in a crescendo

As shadows are blasted by trumpets

Announcing tomorrows rainbow of light.

A symphony of glorious sound

Is orchestrated by victorious dancers,

Rising from the ashes of silence.

Listen to the verses, feel the rhythm,

Life is a song, waiting to be sung...

 

                              

                                                Jack E. Henslee

 

 

 

 

 


 

 

Preface from Len

 

Hello everybody. I want to share something different with you this month. In my nine years as a laryngectomee I have spoken to or corresponded with simply hundreds of you and as a result made many, many friends throughout the world; all due to the brilliance of the internet but more importantly through the real family attitude of WebWhispers.

In my own local group, The Ashford Laryngectomee Club of Ashford, Kent, England, I realised early on that although we men far outnumber the ladies, it is always the men that attend club meetings and that many ladies tend to hide themselves away, only allowing their close family to hear their new voice.

I know that there are many laryngectomee ladies who do exceptional things but if you think about it their pain and difficulties far exceed those of us men. So those ladies are truly exceptional in overcoming those difficulties.

I want to pay tribute to a lady this month a nurse who developed throat cancer. She had risen through the ranks to be the Director of Nurses in her hospital, stepped down before her operation but returned to work as the Nurse Educator. I had corresponded with the lady, Joeann Bowerman of Danville, Arkansas, USA, for some time before I realised that she was one of those exceptional ladies. I tried to get background information from her but Joeann thinks that she is nothing special. Eventually, after I sent her many questions, she told me her story. I call it …..

JOEANN’S STORY

 

Her laryngectomy was on May 5th, 2008 and the surgeon was Dr. Scott Stern at the Baptist Hospital in Little Rock, Arkansas. She previously had 37 radiation treatments from mid- October to December 2007. Three months later in March 2008 they detected that the cancer had returned and an operation was planned. She stepped down from her Director’s job which she had returned to after the radio therapy. We all know the unspoken fears awaiting the operation.

Joeann tells me that during those early months whilst back at work her voice was becoming hoarse again and she had severe pains in her ear. She knew in her own mind that the cancer had returned. She spoke with her surgeon about life afterwards without her voice and felt that her career as a senior nurse was probably finished especially as she trained other nurses. He told her that she would speak again and a laryngectomee could do anything they set their mind to. Joeann, a happily married lady with three grown-up children and four grandchildren, couldn’t imagine working as a nurse, let alone training others, without a proper voice.

After the operation in May 2008 Joeann was offered the position as Nurse Educator and started back full time in August. Her trainee nurses and co-workers of many years took no notice of her new speech. Her patients also made no comments. The person who had taken her position as Director when she stepped down retired in January 2010. After a period of 18 months when she sometimes completely forgot that she was a laryngectomee until she had to cough to clear the trachea, Joeann was delighted to once again be offered the senior position as Director of Nursing.

She tells me that she gave it some thought before accepting, wondering if she still had the stamina for such an important position, especially as it entailed a lot of public speaking. She has been doing that job for the last three years and tells me that her speaking voice is just perfect.

So you ladies who hide yourselves away, a whole new life awaits you out there. It just takes the first step.
Thank you for your story, Joeann. I raise my hat to you!
Len

 

 

 

 

 

 

 


Bits, Bytes and No Butts!

 

A Brand Spanking New View


In just one of our President’s most illuminating moments for me, Ms. Pat Sanders has opened my world up to a whole new way of looking at our world of Webwhispers. I found it so enlightening that I felt the need to share with you some of what I have learned. I know in the past Pat has mentioned some of our analytic numbers, but I thought I’d take it a bit deeper.

Internet Explorer
As a group we have 4,717 member’s visits using IE. Internet Explorer is unique to the Windows family of operating systems since 1995. The security of IE has been an issue for a couple of years until the recent release of IE10. IE10 first appeared as the browser for the new Windows 8 operating system and has recently been made available for Windows 7 users. I can tell you that the new IE10 is much better than its predecessors in every way. The link below will give you more information and the link where you download IE10, if you haven’t already done so.

http://techbeat.com/2013/03/internet-explorer-10-coming-to-windows-7/

Safari
We had 3,654 visitors using Apple’s Safari browser. This is an interesting group since most will be Mac users and spend 30 seconds longer on the site than IE users. Did you know that some online travel services were caught charging Mac users up to 30% more than Windows users? The belief was they had more cash since they were online with more expensive hardware from Apple. Apple has decided to stop supporting the Windows version of Safari due to a lack of acceptance by the Windows community, which has numerous browsers to choose from.

Chrome and Mozilla Firefox
We had another 4,222 visitors who use Chrome or Firefox for browsing. This group is most likely a bit more tech savvy and more comfortable in the modern world of technologies. The ability to customize your browser to fit your needs and asthetics has made these two browsers very popular. Security has been a strong point for both these browsers and is further enhanced by the large number of security add-ons available for them.
They can be downloaded at:

http://www.filehippo.com/

Tablets and Smart Phones
We had well over 1,000 visitors who used their tablets or smart phones to log in and read the latest news in the Forum. Whether out on the go or relaxing in the park you can access the Forum from your favorite portable device.
The number one phone used was the iPhone followed in second place by the iPad.
Do you have a tablet or smart phone ? If you do just visit the forum and bookmark it so it will at your finger tips (literally) when ever you want the latest Lary news.
Today’s tablet prices have fallen below $100 for Android models. If you’re interested in more info check into the Forum for our updates or just ask a question to the group.Just stop in at WWFORUM: http://forums.delphiforums.com/webwhispers/start

Network Providers
The vast majority of visits come through the internet on Comcast’s Internet Services followed by Roadrunner (Which is owned by Time Warner Inc.). Both of these ISP’s offer free security suites to their customers, in addition to their own internal security/firewalls. To download your security suite login to your ISP account and go to the section on security. Look for the downloadable suite that they offer. Comcast will be Norton Internet Security which you can download and install at no additional cost. The same will be true for 90% of all ISP’s. So if you haven’t already done this take the time to do it and get all you are paying for and do not pay for a third party security suite.

Do you use Java?

You will need it to join our Wednesday Night Chats! Java has been in the news quite a bit lately since security concerns have been brought to light. Java is a program that allows a program to work with programs and websites that have been developed with Java.

To update your Windows 32 bit system:
http://www.filehippo.com/download_jre_32/

or for 64 bit systems
http://www.filehippo.com/download_jre_64/

Want to know what version of Java you have? Go to the link below:
http://javatester.org

 

 

 

 


 

 

 

WebWhispers is an Internet based support group. Please check our home page for information about the WebWhispers group, our email lists, membership, or officers.
For newsletter questions, comments or contributions, please write to editor@webwhispers.org
           Managing Editor - Pat Wertz Sanders
           Editor - Donna McGary
          
 

 

 

 

Disclaimer:
 
The information offered via WebWhispers 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. The statements, comments, and/or opinions expressed in the articles in Whispers on the Web are those of the authors only and are not to be construed as those of the WebWhispers management, its general membership, or this newsletter's editorial staff.
 
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