Your new speech option. Did you decide; were options explained to you, or were you just told what was going to happen?
Michael Mac Mahon, Ireland - February 2004
I was laryngectomized at aged 66. The TEP was the only method of speech mentioned to me and I was very much unaware at the time of any other method. Quite honestly, I have no regrets about this. I had a 'voice' from the first moment of the insertion and I have maintained a good voice to the present. I use a Blom Singer dual-valve 20f 8mm TEP which I get replaced once a year in University Hospital Galway.
I live in a small West of Ireland town and I have met only one or two other laryngectomees in the ten years as we are few and far between in this neck of the woods. Consequently, I suppose I get greater value than most from Webwhispers as I eavesdrop on all you people on the other side of the Atlantic. When strangers sometimes ask me (as they will) why I put a finger to my throat, I explain it thus: On my first day in school my teacher told me that if I wished to say something I should put up my hand. I have never lost the habit!!
Richard Crum, IN - July 1988
I was 45 years old, a professional Auctioneer and real estate broker. I had a total laryngectomy at Barns Hospital in St. Louis MO. I had stage 3 cancer of the Larynx. After the surgery I used an electro larynx for about a month. In that month with the help of Ed Lauders Book and Tapes from “Self Help for the Laryngectomy” I learned enough esophageal speech to get by. I did not feel that my esophageal speech was good enough to enable me to make a living for my family.
In Oct 1988, I had the TEP procedure done and I have used it ever since. It has enabled me to continue in my profession. I do not call bids but am still involved in the auction business. I make my living as an appraiser of both real estate and personal property. The TEP was a good choice for me. I still use esophageal speech at times and I am glad I have not lost it over the years.
John Hendrix - August 3, 2011
When it was confirmed that I would definitely need the Lary surgery, I was told of three options. The first two were the EL and ES. The surgeon did not take much time with the first two but really went in depth with the third, a TEP. Looking back, I truly believe they wanted to do it this way as it is more lucrative for them. More extensive work and it requires you in most cases to periodically come back for maintenance. Just more $$$ for all involved. Don’t get me wrong, I think the TEP is a wonderful creation, and for some folks, the absolute best option. My only gripe is the surgeon did not really go into the potential problems with a TEP, a few of which I either went through or continue to fight, nor did they push the benefits of the other two options. Hindsight being 20/20, I would have liked to have tried ES before going with the TEP. In my case, my TEP did not heal correctly or very quickly, and while it is manageable, and I have a decent voice with it, I wonder “what if” sometimes. I had my surgery done where they prefer to do the TEP at the time of the surgery, if this is the option you chose. Even if a person believes they want the TEP, I think there should be a healing period first before initiating the puncture. Just my humble opinion.
All that said, I thank God for being alive, able to breathe, and to be able to talk. I am forever grateful for what I have. By the way, I had my surgery at MD Anderson in Houston. I wish MD A approached things a little differently, now that I am more knowledgeable on the subject, but I have to also add that the folks at MD are very good at what they do and extremely good people inside and out. I think it is huge benefit for anyone who is able to connect with this site before their surgery to get a look at the big picture of what they will be facing. Even better to also meet a Lary before surgery as discussed in last month’s Speaking Out question. I sure wish I could have done both.
Jim Fohey, Oscoda MI - class of 94
Prior to my surgery in 94 the doctor said I would be started out with a servox while in the hospital as he was of the belief that a lary should start out right away with some sort of communication device for their wellbeing and then progress to the TEP. So I was given a Servox to use while in the hospital, granted due to the swelling it took a few days to be understood but by discharge I was doing pretty good on it. Due to some healing issues and having to stay on a feeding tube for a while the TEP was not done until about a year and a half later.
Once done after a few days I was told to occlude my stoma a talk which I could without any device being put in, how happy I was and so were the doctors. So they put in the device and off I went home to demonstrate at my business that I would no long sound like a R2D2 and CP3O combination. All worked well for as long as I had it. One night I started to cough really hard in the middle of the night and coughed it out, I put it back in or so I thought but I guess I didn’t get it all the way secure or coughed it out again later in the night because come the morning I had no voice. So out came my servox and off to work to open and let my manager know I was off to the doctors some 3 and half hours away by the time I was there the opening had healed over and we could not break through. My doctor called Dr. Blom for a suggestion and was told let it heal over completely and then redo the operation.
As time went on I just never went back to have the operation now after all these years there is no reason to do it. I do wish I still had the TEP as I had a good strong voice, but as someone once told me you build a bridge and get over it and move on. I have, and have my trusty Servox and its two standbys at hand. I also use some ES speech but for long discussions, it is the Servox.
Rita Kinney, Aptos, CA - March 1993
When I had my surgery in 1993, I was introduced to the Servox and sent to a speech therapist to learn esophageal speech. I attended a California conference and met Dr. Jim Shanks, who was wonderful and tried to get me to relax, but I guess I didn't have the patience to master this type of speech.
After a year and a half I met Dr. Mark Singer who had his staff administer the insufflation test and I couldn't believe the quality of my voice. I immediately had my surgeon perform the puncture so I could speak with the TEP. There was another CAL Conference in San Francisco and with the help of Carla Gress, I was fitted with the right size and also introduced to the hands free equipment.
Needless to say, I have had a wonderful quality of life and I am very grateful for the dedication and help I received from Dr. SInger and Carla Gress.
Tom Olsavicky, Pres., Newport News, VA - 2008
After I was told that I would be losing my voice box, I began researching the alternatives on the internet and through a local lost chord club. I talked to the surgeon who said that he would do a primary puncture if I wanted but he advised me to wait a few months since I had radiation prior to surgery. I agreed to wait six months and then I would know exactly what I wanted. I talked with my SLP, she did an insufflation test and I sounded very good so a TEP was a possibility. However, I was concerned that a TEP would be more maintenance and more recurring changes than I would like. I also didn't want the worry of finding an SLP while traveling. Esophageal speech was something that I tried but was not having any luck. Then I heard a fellow at the Tidewater Lost Chord Club who was using a TruTone EL and I liked his sound and volume. That convinced me that if I could sound nearly as good, then that is the way I would go.
I attended an IAL Conference just four months after surgery and met Tony Talmich and listened to his demo of the TruTone. I was convinced that a TruTone EL was for me. I was lucky to be able to find my sweet spot, I sound every bit as good as the other club member, I can be understood even of the phone and I have not looked back. Even my grandkids love it. Tom Olsavicky, Pres., Peninsula Lost Chord Club
Maureen Mark, Pittsburgh, PA - July 9, 2013
I was really never told much about how I would speak. I was given an EL about day 3, post op, showed how to use, and left to learn on my own. I saw the doctor 2 weeks after my surgery, and at that time he said, "Let's get you talking", and I was sent next door to the SLP dept., where they proceeded to put a tep in, and I have been talking with that ever since....
I must say, they were really bad on the communication part of this whole ordeal, and I did not know enough about it to ask what was coming next. Every step of it has pretty much been a surprise, other than what I learned myself from WebWhispers. And I thank God every day to have had that resource.
I wasn't really given any information, I was just told I would get a TEP. Even with the TEP though, 1.5 years was wasted NOT talking because I was made to use the stickies and they would never stick longer than 10 minutes because the mucus would always bust the seal. So after 1.5 years of not working, the ST finally put holes in my lary tube which eliminated the need for the stickies and I've been talking ever since. I don't know why they waited so long to do something as simple as put holes in the lary tube. I wasted a lot of money on stickies that didn't work and I spent a looooong time being depressed over not being able to talk.
May God bless you today and everyday!
Dave Aitchison, Canada & S. TX - April 2012
I had a bit of advance notice before my laryengectomy so used the time to research voice choices. My SLP was supportive although she only had worked with TEPs. We are Canadians that have a winter home in South Texas. Our insurance would not pay to have a TEP changed in the USA. I watched several You Tube videos on esophageal speech and also was fortunate enough to have Jim Lauder write me after one of my posts. He sent me Self Help for the Laryengectomy . After my surgery I met Elizabeth Finchem through WW.
After one session I was able to call my wife. I chose to call her Scotch Tape as it was either that or Cup Cake, and Cup Cake sounded too gushy. Those were the first words I had been able to utter for three months. I was so proud of myself. I continued to chat with Elizabeth over the next couple of months and became reasonably proficient. I am now two years post surgery.
I continue to be an advocate of esophageal speech. I am addressing a group of SLP students in late March in Edinburg, TX. I warned their instructor that I use ES and he was quite pleased. The point of my recent postings on Daily Whispers was to educate the medical community and I can assure you there will be twenty new SLP students that will be very familiar with ES when my discussions with them are finished.
Good luck all and stay positive.
Len Hynds of Ashford, Kent, England - 2004.
I am always amazed when the new members are announced in the digest, and of those in America, it is said that they had not yet decided as to what type of speaking to have. I can only speak for the main hospitals in my own county of Kent in England, and I believe it to be general throughout trhe country, but at the time of the operation, even though the three types of speaking were mentioned briefly, it was assumed by all that a TEP prosthetic valve would be installed, but if that was not possible for whatever reason, it is only then that an alternative is spoken about fully. You are not given the remarkable choice in the beginning, that you have in America, but those who use the electro-larynx, normally have no other means, and those who use air from the stomach, keep their valves in position whilst learning to speak hands free.
Lynn Foti,Akron, Ohio - May 2009
My decision to use a TEP prosthesis was made because I had no idea that esophageal speech was an option. I tried using an EL, but because of the extensive scarring on my neck and the large amount of swelling, I was unable to find a sweet spot. I also tried using the straw that goes in your mouth, but that didn't work either, for the same reasons. My mouth was swollen inside, my tongue, and for a long time, I couldn't even get my tongue to stay put in my mouth and had to push it in with my fingers.
I had had 3 surgeries within less than a month, and it took over a year for most of the swelling to go down, as of now, after nearly 5 years, I still have swelling in the neck area, and spots that are hard too. The scars are very deep. The TEP was easy for me, and I was able to speak with it immediately, it was over 7 months after my last surgery, so I had time to heal from the esophageal reconstruction. I have been mostly happy with it, have had a few issues with leaking and having to drive a good distance to get it changed, but it is closest to my old voice, and works out pretty well. I am glad we have that option.
David Kinkead - July, 29, 2013
When I was told I needed to have the operation, everything was a blur. While I went to one of the finest cancer hospitals in my area, I was the first laryngectomy at this hospital. I did much research on line for speech options and I told them what EL to order. No other option was explained by the SLP. She showed me a TEP in box but her or I didn't really know what it was.
My ENT has mentioned that since I had radiation two years before my surgery he wanted to wait until I healed to see about a TEP. I never heard anything about ES. I had issues with the healing and now almost eight months later have started on a liquid diet. I am very good with the EL. I go to a support group at a different hospital and most of the people there speak with the TEP. No one uses ES although a few do use a no hands TEP and sound real good. I would put my ability to be understood against any of the TEP people. I hope to eventually get a TEP and go hands free but with the radiation damage, I may not be able to.
Harrry Wintemberg, FL - 1982
In the late 70's and early 80's the TEP option was very much in its infancy in the United States and from what I was told and/or read the failure rate gave one cause to think twice before going that route. EL's were very popular due to their providing the patient with a quick and relatively easy way to start communicating audibly, BUT inexperience of the patient and the quality of voice reproduction sounded the like synthesized voice of "ET" (the movie).
Esophageal (ES) manner of speaking then, as it is now, was a more difficult and time-consuming option. Also most speech pathologists did not have the training or skills to qualify as an ES instructor. So floundering in this sea of confusion, I was introduced to one who had her PHD with her thesis in ES. Like winning the lottery, I immediately registered with her and spent 4-5 months of total devotion to my obsession for learning ES. It is now 32 years later and there isn't a shred of doubt they were the best and most rewarding months of my life. Can everyone develop ths skill? Absolutely not! The scope of the surgical procedure, radiation damage to healthy tissue and other factors like motivation, dedication, etc. all determine the probability of success.
Terry Duga, Indianapolis, IN - 1995 Total
When I had my total laryngectomy, Eric Blom was the SLP working with my surgeon, Dr.Ronald Hamaker. That practice had pioneered the Blom-SInger prosthesis and operation. I had been lucky enough earlier to witness a patient recieve his first prothsesis and say his first words. There was no question that I wanted to have that type of speech.
Dr. Hamaker performed the puncture as part of the main operation. This worked two benefits,
1. I did not have to have a second procedure.
2. THe feeding tube was put down the puncture rather than my nose. Having had a feeding tube down my nose when I had a partial laryngectomy, I was thankful for the puncture placement of the tube.
When I had healed sufficently the feeding tube was removed and the prosthesis placed. I was able to speak, though I admit it took me a little while to become a good speaker, and I have continued with the prosthesis ever since.
I am a huge fan of the prosthesis. Yes, it is not perfect, but it is a great way to get good speech that can be heard.
Jack Davidson - Sep 2012
My surgery was done at the VA hospital in Dallas. Speaking options were not mentioned beforehand.
When I came out of surgery I had a TEP (puncture) with a rubber tube going through it to keep the puncture from closing. The tube was attached to my chest by a few sutures. While in intensive care after surgery, one of the SLP's came by to explain what the tube was and showed me pictures of (Drawings) of the inserted prosthesis (sideview).
Two months later I was fitted with a prosthesis and was taught how to speak. It worked almost immediately.
Eight months later it began leaking. They replaced it, and will continue to do so as needed. I requested an EL to use as backup. They gave me a Servox- free of charge.
I cannot say enough good things about the VA in Dallas. The care is wonderful and I have never paid anything for services, durable goods, equipment or supplies.
Linda Palucci, Florida - 11 1/2 year lary
I sort of just "go with the flow" when Doctors told me I needed surgery, to stay alive, I immediately said Okay. They asked me if I wanted to live or talk. I choose the former. Anyhow, dr said he could put something in my throat that would allow me to talk. I guess my cancer was pretty serious, 'cause they got me in for the operation real fast. My GP told me years later, she didn't think I was going to "make it". Good thing I didn't know that then, I might have given up.
After surgery, they gave me an EL, which allowed me to communicate. But I could not speak softly with it and everyone within 25 feet could hear what I said. I was tested and fitted with a TEP, which I eventually mastered. And I also leaned ES enough to use, but can not speak as loud and fast as I do with TEP. I like the TEP, I sound pretty natural, rarely have a problem and can speak pretty decent, on the phone, plus, yell across a room, or football field. My singing voice needs help, but then, I never could sing. The thing I miss most with this whole situation is I can't swim any more. But I guess it's a small price to pay to be able to continue to stay here and enjoy my family and friends.
Bishop Duncan M. Wanjig
My best option is use of electrolatynx (Servox # one). A friend in USA introduced me to it. Iam a preacher, Teacher and a counselor. No other is better than this for me. I also fairly well with ES. My larymngectomy was done in 1994 ie Twenty years of happy life with my wife Sarah and our Three children Mercy, Tabitha (married to Daniel) and John. I am a grandfather of 2 kids. I am a Kenyan and live in Thika (Kenya) a City of Pineapples.
I have TEP voice as a result of:
1) having been made aware of the Web Whispers site a year or two before my surgery,
2) my investigation of all matters concerning total laryngectomy surgery including voicing options and the pro and cons of each,
3) having the immediate need for good intelligible voice for public speaking,
4) ordering my surgeon to provide me with TEP unless there were medical reasons for not doing so.
That was nine years ago and I am very happy I made the choice.
Manny Castillo, Valley Village, CA - Class of 2004
I am very happy to be alive!
My doctor and friend Dr. Larian made several attempts to save my vocal cords after I was diagnosed with cancer of the left vocal cord. First, was the radiation treatment which was very successful for about 7 months. The cancer returned and Dr. Larian did a partial Laryngectomy and I was able to speak, not as good as I would have wanted but
At least I was understood. About 11 months later the cancer returned. At this time there was no other option available but a complete Laryngectomy.
Before the surgery Dr. Larian, my wife and I had a meeting and he described in details what was going to happen and the possibility of a very long recovery time. But, I never forget his final words: “Manny, no matter how long it will take, I promise, you will be able to speak again.” And by Golly, I now can speak!!!
My puncture was done during the surgery and one month later the “TEP” prosthesis was inserted and believe it or not I was able to speak right away. My first word was ahhh, ahhh, OK!
The rest is history that was in 2004.
Robert Legros, Québec, Canada - 2011
I had my total laryngectomy on April 5, 2011 at the Gatineau Hospital, in Gatineau, Québec, Canada.
It was my surgeon's intention to give me at TEP. No other option was discussed at that time. I met with a volunteer who was using a TEP, and I assumed that was it.
Because of complications, a TEP procedure could not be performed. Complications lasted for about three months, when he informed me that it would be several months before he would even consider a TEP. I was loaned an EL, which I did not like. And I did not want to wait.
I did some research and found out about esophageal speech and discussed it with my SLP. I started learning ES in early October 2011. I picked it up very quickly, and soon was able to carry on a conversation.
Pete Meuleveld, Salem, OR - June 2010
When I had my consultation and decided on the laryngectomy surgery, I made it clear I wanted the best voice that would be closest to my original voice. The TEP procedure was the obvious selection, and the cost and maintenance factors were explained. Other options were also explained. In the few days before the surgery, I looked at and listened to examples on websites of esophageal and artificial larynx speakers. I then decided to go ahead with the TEP and am glad I did.
Lorna Larson, St. Louis, MO - January 16, 2014
I saw the SLP a couple of days before my surgery. I was inpatient at the hospital at the time, so the nurse had to go with me. She had never sat in one of these appointments, so she learned a lot too.
During the visit, the SLP went over how life will change for me with the laryngectomy. I didn’t have anytime to do research, so this was very helpful.
She also explained the 3 ways I would be able to talk, EL, TEP, and ES. I ruled out TEP quickly, as I had prior radiation and there were risks involved. Plus, I didn’t think I could handle the additional maintenance.
After the surgery, at my second visit with the SLP, I was practicing some of the vowel sounds that tend to be troublesome when using the EL (D, T, K, etc.) As I practiced - out came ES - I thought it was just annoying burping. I don't speak ES yet, but have my exercises, so I practice when I can.
One night, I was reading a book, and my son was washing dishes in the kitchen. I said something to him using ES. He turned around, shocked - and said “Mom, you just talked!”.
Thank you for your submissions. Edits are used for length, clarity and to keep comments on subject of the month.
Staff of Speaking Out