I am desperately seeking some input or advice as to how to address the fact that I am unable to eat due to extensive radiation in my throat following squamous cell cancer diagnosis. It has left scar tissue that prevents anything but thin broth from going down. I am surviving on a feeding tube but have faith that there must be a surgical solution. Anyone able to help? Thanks. JOHN

John, As far as I know there are NO surgical soultions but talking to your otolaryngology surgeon would be my first suggestion. I have never heard of any procedures that would address this. Currently after being treated 10 years ago my throat has ceased functioning and currently I am in the same position as you only able to swallow thin liquids. Prior to this for 9.5 years I was eating almost everything without to much trouble aside from washing it down with lots of water or liquid. The other suggestion is try to swallow other things and do not give up. The basic function of the throat is all nerve and muscle so pushing these to the limit everyday may help and do as many swallow exercises as you can to strengthen the function too. The best to you if your interested in talking about this live let me know I am available.

John look at this VITALSTIM on internet Google this word vitalstim

lhttp://www.vitalstimtherapy.com/ud.aspink bekow

I do not know if anyone has tried this type therapy aside from Paul who I spoke with and he said it helped him.

John,

If the "scar tissue" you are referring to is a stricture in your esophagus there IS a surgical solution. I was in your shoes, except the stricture had become complete, and I had surgery at Brigham and Women's hospital, in Boston, that cut through the stricture and dilated my esophagus. Since then, I have had to go back for more esophageal dilitations and I had an unusual and slightly scary complication during the original surgery (but luckily I was at a hospital rated as one of the best in the country and they found a solution and, as I said, that kind of complication is very rare).

I have only partially regained my swallowing ability--I can still only swallow smooth fluids (soups, etc.) and some things with a little more substance (yogurt, mashed potatoes, grits, etc.) but no real food with any chunks of stuff in it. This is because I had more wrong than just the stricture but probably also because of the amount of time when I went without swallowing much before I had the surgery (my doctors here were slow to diagnose the cause as a stricture--long story). So there is good reason to try to get this surgery ASAP--and in the menawhile, keep swallowing the fluids you can swallow.

Brigham and Women's isn't the only place that does this surgery, though my impression is they are few and far between, especially if you have a complete stricture or an almost complete one. I think they do it at Sloan-Kettering too.

Anyway, feel free to send me a message and when I can I'll give you more info.

Nelie

Nelie, did you ever have any complications with the dialation procedure? I spkoe to a doctor today about doing this. He told me some times a tear can develope and then surgery must be done to put a drain in neck so it heals? Have you ever heard of this? It scared me quite a lot.

Yes, John, that was the complication I was referring to: when they opened my stricture, they ended up perforating the esophagus and air got into the outside of my chest cavity and when I came to in recovery my lung had collapsed as a result(I guess it must have happened after they unhooked me from stuff that would presumably monitor this in the operating room). They re-inflated my lung in the recovery area through inserting a chest tube (and this hurt like a SOB--taught me what the higher numbers on that pain scale they give you are for!)

Apparently with small tears, they sometimes just keep the person an extra day or two until they think it healed. But this was a large tear, and that can be quite dangerous. The primary danger being that if your saliva gets into the chest cavity with bacteria in it, you can develop a nasty, possibly even fatal, infection. So I was in the hospital for three days with a chest tube and suction so my lung wouldn't collpase again, and superstrong IV antibiotics (which gave me a nasty case of thrush which you think would be just as bad in terms of causing problems), they did a swallowing test and saw the fluid I swallowed was still leaking form the esophagus, and decided they needed to put a stent in my throat.

More surgery. And, I will not sugar coat it, the stent left me very very uncomfortable, sometimes with severe pain, especially in the area where it started and eneded, for a few months after that surgery. To top it off, another stricture started to grow over the stent so I could barely swallow about four months after that surgery. The thoracic surgeon who had inserted it had wanted me to try keeping it in a year, thinking that it would decrease the need for more dilitations when it was removed, but finally when I could barely swallow at all again, he removed it after about 5 months (I think 2 months was what it needed to be in to be sure the perf. had healed). Since it was removed I've had two more dilitations. A lot of surgery and pain for the small amount of swallowing ability I've regained some might say. But to me it is definitely worth it. Before I couldn't even swallow my own saliva. Now, if I find a place that serves the right kind of soup, I can even go out to dinner with my husband now and then.

However, I think what happened to me is a good argument for getting the procedure done in a top notch hospital where, as a doctor friend of mine put it, if they break it at least they can fix it!

Nelie

I should add that they had done this surgery on approximately 50 patients before me and never had a severe perforation, so that kind of complication isn't that common--maybe a 2-5% chance, though I think it is more likely if you have a more complete or longer stricture.

John,

I had two of the esophagus endoscopies done about 3 weeks apart about a year and a half after extensive tongue and pharyngeal surgery. I did not start therapy until nearly 9 months after my operation as I developed 2 cellulitis infections after 36 radiation treatments. I had nearly a year of therapy including vitalstim. I think the vitalstim and the stretches helped me the most.

Even after that I was not as agressive as I should have been with taling things by mouth. I became too dependent on the tube and only swallowed fruit juice. Then I started having trouble with the tube and thanks to inspiration from "misskate" on this forum who had similar surgery did I begin to take things mostly by mouth. Good thing because my third tube, a balloon type, gave me fits, I bled heavily and it was removed on Oct. 4 at the ER.

So I would pursue vitalstim and esophagus stretches by endoscopy. I wish you all the best.

Jim
SCC Rt lateral tongue Dx 9/03, Surg 11/03 (T2/N0M0);recur SCC BOT and anterior tongue Dx 1/04; surg 2/04 (T4/N0M0) subtotal glossectomy, forearm free flap, floor of mouth reconstruction,pharyngoplasty;trach until 3/04;PEG; 36 rad (3/04-5/04)therapy 12/04-12/05; 2 esophagus endoscopies; PEG infections Nov-Dec 06; embedded tube replaced by endoscopy Feb 07; replaced Sep 07; bleeding, tube removed Oct 07

John,
My husband ,Gil, ended treatment 3/10/06 and couldn't swallow his own silvia( he had his peg put in before chemo/IRMT started. After 2 months they did the barium test and found that his esopghagus was totally obstructed by scar tissue over the opening to the esopaghus.
We were referred to Memorial Sloan- Kettering and went every 2 weeks from beginning of June 2006- beginning of September 2006 for dilations which were done as outpatient. This was continued in our local (rural) cancer center every 2weeks from September 2006-thru this past June. Since the end of June he is now dilated montly. The scar tissue has slowed down on snapping back(like a rubber band) .His gastroenterologist is slow and steady. He has been off the peg tube since Easter but still has it as they dilate through his peg upwards thru his stomach. They are still unable to dilate thru his mouth.He supplements his diet with Jevity as it takes him a very long time to eat. Everything is tiny bites but he is eating.His esopaghus is open to normal size but food gets stuck. It will be fine for meatloaf and then 2 minutes later it is not. The surgeon feels that at his 2 year post treatment mark he will send us back to Sloan- kettering to see if any of this scar tissue can be removed.
He lived to eat and this has been apainful new normal. he gets fustrated and sad but is making it his way. We rarely eat out as he feels uncomfortable with how long it takes him to eat( half hour to eat 2 fried eggs). We don't know if ?probably not ever be able to eat steak and ribs. He also has lost much of his taste buds and has very dry mouth. We keep trying stuff. He never talks about the cancer . Actually, I believe this is harder for him then the cancer diagnosis or treatment.
I sometimes just cry over how much he has been thru and how hard he trys.. It is better.
Paula