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Voice Box Prosthesis & Dialation

rdbaughman's picture
rdbaughman
Posts: 35
Joined: Mar 2012

I had my surgery for Total Laragectomy approximately 10 weeks ago. I had my 1st voice box prosthesis installed three weeks later. It did not work at all so my surgeon swaped it out for the next size larger & it worked just a little & I was having to work so hard to produce any sound at all. I just had my appointment with a speech therapist today & was told that I have a stricture that will have to be delt with by dialation. Has anyone had this problem?
The therapist says that she believes the passage is too narrow to allow enough air from the voice box prosthesis to enable any speech.
This cancer has faught me every single step of the way. I had the normal 42 Radiation & 6 Chemo sessions that did not work so I had to have the Total Laragectomy. Now the Voice Box Prosthesis arn't working & now the stricture. I'm sitting here wondering what is going to happen next. I already know that I will have to have more than one Dialation from what I have been reading here tonight. I just want to be able to talk again. I feel so helpless because I can't even anwser my cell phone & have to have my Mom & Dad take my calls & arainge all my appointments. They are 79 years old & I just feel so bad for them having to do this for me. I just hope things start going in a better direction for me soon. Any way, sorry if I sound like a complainer.
If anyone can tell me if they ever had a problem with the Voice Box Prosthesis like I'm having please let me know.
Thank's for your time & God bless..........Roger

Hal61's picture
Hal61
Posts: 656
Joined: Dec 2009

Hi Roger, you have had a tought fight, and it's normal to be frustrated, who wouldn't be.
You don't sound like a complainer, you sound like a cancer survivor who's still having to fight, and wait, and hope for the best. I haven't had dilations, but many here have, and they have had strictures also. The dilations do a lot of good, and I hope they will open your pipes up enough to use the voice box.
It sounds like you don't especially have a problem with the prosthesis, but with getting enough air flow to make it work. Good for your folks for helping you, and don't feel too bad for letting them.

I'm not a fisherman, several on here are. What kind of fish are you holding? Is it a pike? It's a long one.

best of luck with the dilations, Hal

rdbaughman's picture
rdbaughman
Posts: 35
Joined: Mar 2012

Hi Hal,
It's a 38" Pike I caught with my Daughter in the boat, she was more excited than I was. She was here from out of state with me while I was going through Chemo & Radiation treatments last summer. And yes, the Pike went back in to get larger. I'm strictly Catch, Photograph & Release.
Once again, thank's for the advice. Looks like we are both the same age. I'm 61 as well.
Rog

jtl's picture
jtl
Posts: 419
Joined: Sep 2011

Northern or Walleye. I am originally from Minnesota, you betcha, and we fished for both. However the largest and the best came from Canada.
Hope the voice thing improves.
John

phrannie51's picture
phrannie51
Posts: 3620
Joined: Mar 2012

within 3 months or so of her laryngetomy. Tho she didn't have any stritures, the process of getting fitted correctly took some time. Like you, she was very disappointed when she got her first one and it didn't work. First, get the obvious out of the way...the dialation...see if that was all it needed. My mom and her ENT worked together getting the right size for her....I remember the day she went in to him for the third try, and came home talking...just hang in there, it's going to happen!!

p

Came back here to edit this a little. I'm going to pick my sister's brain a little on this subject...she might remember more on the timeline and the steps they took to getting mom talking.

rdbaughman's picture
rdbaughman
Posts: 35
Joined: Mar 2012

Thank's for the information, it's most appreciated..

ROGER

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

Hi Roger, when it comes to dilatations, I am probably the king. Yesterday, I had my 42nd one. It started back in June 2007. My radiation treatments were back in 2004. Radiation is the gift that keeps on giving. You will probably need them every 4 to 6 weeks to keep the stricture open. The soreness usually only lasts a few days at the most. Right now, I am having them every two weeks trying to get the stricture to stay open so that I can at least swallow something. I had mandible reconstruction surgery that didn't work out back in June of last year. For six months after that surgery I wasn't dilated at all. I'm paying the price for it now. The danged thing closes right back up within a matter of days if not hours. The procedure itself doesn't take long and they do it under general anesthesia. I haven't had a laryngectomy so I can't really comment on that aspect. If you have any other questions about dilations, don't hesitate to ask. I tell the anesthesiologist to put the Propofol in very, very slowly. At least that way a get a little bit of bliss before I wake up to a throatful of pain. :-) Good luck! Oh, and by the way, I know exactly what you mean about feeling helpless with the cell phone. I haven't been able to talk since June. I have to get my sister to be my voice. Alot of my doctors have given me their email addresses so I can make appointments that way. You might want to ask yours if that is possible.

rdbaughman's picture
rdbaughman
Posts: 35
Joined: Mar 2012

Hi George,
Thank you for the information, but cant say I was happy to hear that you have had 42 of these procedures.
I actually had to go in & see my doctor again yesterday & he is ordering another "Swallow Test" before he agrees to the Dialations. It's his thought that if i'm able to eat now with no problem other than soreness then there should not be a problem getting enough air back up for my "Voice Box Prosthesis" to work. He thinks that possible we neede to try another type of "Prosthesis". That is what this is all about, getting my voice back. We have tried 2 different sizes & I have to put too much pressure to get air back up with very little results. My Speech Therapist was the one that wants the "Dialations". I tend to agree with my Doctor/Surgeon & not jump right into the "Dialations" right away if not necessary. I can swallow well enough now that I'm 100% feeding by mouth now & we will get rid of my "Feeding Peg" real soon.
Once again I thank you for your information, it is most appreciated.
Roger

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

Hi Roger, I'm very glad to hear that you can still swallow. My problem is the radiation beside giving me the stricture, has curled and shrunk my epiglottis and made it non-functional. With the stricture closed, anything I try to swallow goes down my trachea or out my nose because the epiglottis isn't covering the trachea opening. I hope you get your voice back real soon. As I said, I do know how frustrating that is!

rdbaughman's picture
rdbaughman
Posts: 35
Joined: Mar 2012

George,
Sounds to me like you have a bigger problem than me. At least I can eat now, I would much rather be able to eat than talk. I went close to 9 months with out eating, lost 90 pounds which is a good thing because I was extremly over weight now i'm right about where I feel comfortable. I sure hope that your situatuion gets better for you soon.
Roger

jtl's picture
jtl
Posts: 419
Joined: Sep 2011

I was surprised to learn that strictures can happen so long after rads. I would have thought that if a person was going to have that problem it would be during or very soon after the last treatment. Is your case unusual?
John

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

Unfortunately, radiation keeps on causing problems long after it's over. I had a total of 38 treatments. I don't want to scare anyone but I didn't start having problems until about a year and a half after the last treatment. That's when the voice started to go. The neck started getting stiffer and harder about that time. The mandible problem didn't manifest itself until about January of 2011. My last radiation treatment was in May of 2004. I ended up having the left side of my jawbone die due to the radiation even though I had all my remaining teeth pulled before the treatments started. That was supposed to prevent that happening.

Oh, and Roger, I wish you would stop reading my mind. I just got back from my swallow therapy session. I expressed to her that I was thinking about having a laryngectomy because I would rather be able to eat than talk. There is one thing I haven't tried yet and that is a stent. I hear they are very uncomfortable. If anyone reading this has ever had one installed because of an esophageal stricture, please let me know what you think. Thanks.

phrannie51's picture
phrannie51
Posts: 3620
Joined: Mar 2012

Blom-Singer...was the manufacturer of my mom's prothesis. They make a low-pressure style, and I think the reason they chose it was because my mom had COPD. In the beginning there was a lot of trouble fitting her so that she could talk (so much trouble that Blom-Singer asked if she wanted to fly out and let them fit her. Her ENT was going to go, too). However, her ENT has a bit of a talent for mechanical engineering, and they ended up cutting it off just a couple millimeters...and bingo, she was talking.

p

nickletoo
Posts: 3
Joined: May 2012

i am new to this site but am not new to being a lary. i had my surgery june 13 2003. if they have not offered you an electrolarynx ask for one. learn how to use it. if you can use the prosthesis fine but the electrolarynx can be your back up. i went two years with dilations every two weeks just to be able to swallow before i could take the feeding tube out. i still have dilations every 4 months. i have two strictures, one at the back of my throat that is like a shephers hook that is causing the most problem. the only time i give in is when i can no longer take my meds. i could not use the TEP'S as i am allergic to the hypo alergic material they are made of. my body rejected two of the long term TEP's .... a very long story. warning.... radiation never stops doing damage. i am now having muscle spasms that are making my life hell. did you know you can have muscle spasms in your tongue? eyebrows? you have to find humor here somewhere just to survive it. when you hear those first words throat cancer, laryngectomy....you have to make a decision to either help the people around you deal with this including dr's and nurses, or fall into the pit. i deal with it by laughing at myself. find the perks like losing weight, acting wise and knowing, when there is turmoil around you.. they dont know you cant find your electrolarynx or it just isnt worth the air you would need to use to talk. i took a sign language class. after 9 years i still look forward to my gift of tomorrow. even though if it could go wrong it has. murphy is my copilot.

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