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