Swallowing After Treatment

I have been treated with chemo and radiation therapy for SCC of my tonsil, base of tongue and some lymph nodes.So far so good, the PET scans look good. i have been on a G-tube since the end of 2006 for everything - feedings, medications, etc.I go to UCLA for "swallow therapy" but I do not believe it helps (although I have a really strong tongue now) .I have had 3 Swallow Studies which all show that when I swallow anything, it goes directly into my lungs. I have already been hospitalized once because of inhalation pneumonia. 

                                 I CANNOT SWALLOW.

Do anybody know anything about electric stimulation of nerves for swallowing? 

Please reply if you have any knowledge of swallowing. Thanks, Bruce.

Bruce

 After your lenghty treatment and attempts to deal with the difficulties you now experience with swallowing, I'm just a novice at this game. However, there are many resources available on-line that discuss the subject. But I can't believe that there aren't Doctors or nurses at UCLA that can't help you more. My wife and I pester the hell out of everyone - now, for all the side affects resulting from treatment for LNs and tumor at base of tongue this winter.

I had my G-tube put in in January and get it out tuesday. I haven't used it in weeks, but that's only because my taste buds are back to near normal. Dry mouth is one thing to deal with, but taste distortion is very difficult to live with.

Visit the web site for the American Society of Clinical Oncology, www.asco.org They just held their annual meeting here in Chicago last week and I guess swallowing was a topic discussed. On the home page, there is a box for advanced searches. Type in "swallowing" and you will get some abstracts written on the subject. The web site will also give you ways to contact experts on any cancer related subject.

Glad to hear your scans have been positive (actually negative). My next scan in July will tell us if I'll need a neck disection or not. It was on the ASCO web site that I learned how nasty that procedure can be.

Having lived in LA and OC for 20 years, I have wondered if all the smog wasn't partly to blame for my cancer, but fortunately the VA is of the opinion it was a result of Agent Orange.

 Google the heck out of the subject and you will find some good information - and some not so good.

Keep up the fight, Bruce, and you'll be eating pizza and pop corn soon.

Good luck!                                                                                         Steve

Hi, Bruce. Like Steve, I find it hard to believe that tou cant get help at a place like UCLA. After 3 swallow studies I would think that they had a better answer for you. I know it's possible to for the body to forget how to swallow (explained to me by my oncologist and my ENT), so I was careful to try to swallow something each day during my treatment for tonsil cancer. I did a swallow study too, and was given a list of exercises to do, but now , at 8 months out, I still have a little difficulty "coordinating" the muscles in my throat. I havent heard about electrical therapy for swallowing, but I havent had to do any research on it, either.

That ASCO website Steve mentioned is a good place to start.

Congrats on your clean PET scan, those are nice when you get them.

Best wishes, and good luck on your search.

Mike

My husband is receiving tonsil cancer treatment at Shands hospital in Gainesville, Fla. We have met a gentleman who has used a feeding tube for 7 years and is seeing Dr. Giselle Mann in the swallowing research lab. It may be worth a call 352-273-6164.

Best Wishes,

DeniseB

hi, i have had my G tube in since last March 2007, they said it would only be for a few weeks. I started to try and eat in May 2007 and by July 07 they found out it was entering the lung after developing pnuemonia after being hospitised. I had a barium swallow which found that the epiglottis wasnt working and told not to eat or drink. but I continued to drink water with difficulty, I have to be very careful and been told to look out for signs that might indicate infection. Thats my choice to try and drink not eating is one thing but no drink!!!!! i suffer from very dry mouth. ive no salivary glands left. I pushed for another swallow which I had last week. Unfortunately the structure of my throat and voice box etc has changed shape and is not allowing the water and food to pass down.  On the good side the epiglottis was working but very weak. They say now that I will have the tube in for life as there is little they can do. the radiation has caused too much damage. Like you Im trying to come to terms with it and keep reminding myself that at least the cancer has gone and Im still here. but eating is a social thing and my family find it hard when we go out for family occasions and I cant eat with them. I remind them at least I still sitting there with them enjoying their company. BUT saying that I havent given up yet, maybe in 6 months things might of improved, who knows!!! though the speech therapist said it could get worse!! God forbid. But it is frustrating I can emphasise how you feel. I can only open my mouth a few cms and my tongue doesnt work properly. My voice isnt great either, but i can talk. I've been signed of speech therapy and physio now. take care i know i haven't been much hope for you but you maybe wont feel so alone in your struggle now. God bless!! x 

Butterfly Dancer, you are not alone. I am 33 years old and have had my PEG tube since Oct. '05. The doctors that treated me kept telling me I would be eating soon, but by February '06, it hadn't happened. I demanded a scope of my throat and they discovered that my esophagus was completely closed. I had to go to a teaching hospital to have the procedure done. After countless procedures and tons of expensive speech therapy and a "routine" procedure wherein my esophagus got "nicked" and I ended up in ICU on a ventilator for a week, I have decided against pursuing further treatment. It is just too painful mentally and physically and the risks are not worth the small reward because they told me I would always have the tube anyway; I would just enjoy small amounts of food. It has taken me a looong time to come to terms with it and a lot of therapy, frankly, to be at peace. It is so hard to not be able to eat because so few people understand it and it is ingrained in our culture. I used to find family functions excrutiating and would avoid them, then I realized I was punishing my family, especially my three-year-old daughter. Now I try to be a part of the experience in other ways, by doing the cooking and cleaning up. I still can't go into a restaurant though. ; ) I stay busy with lots of activities that don't involve food (they're out there, although it takes a while to find them!) I also have gotten a low-profile button tube and changed to a higher calorie formula and those two things have made a world of difference. Please feel free to PM me if you want to chat.

However, I would encourage anyone who is faced with not swallowing  after a month or more to demand a scope of your esophagus to determine if there is any damage there. If you have been through speech therapy and are still having problems, there may be structural changes that have gone on. I got completely fried and my doctors at the teaching hospital I went to were dismayed at the lack of care I received treatment. My radiation oncologists have since changed their procedures, thankfully. I wouldn't want what happened to me to happen to ANYONE.

Also, Bruce, I tried e-stim for months and it didn't work for me. However, it does work wonders for some people, so it wouldn't hurt to give it a try. You just have to make sure that your therapist is certified to administer the treatment. Good luck and God Bless!

I have heard that the University of Pittsburg Medical Center has a world class swallowing disorders center. I'm sure they would take your phone call.

Their web site is www.upmc.com , then,in the upper right hand search box type in swallowing disorders center. Might be worth a try.

Good luck, guys!

Hi: Similar story to yours. I was told that I might never swallow again which made me quite desperate until my PT took charge and got on my surgeons case. I underwent an operation which both expanded my esophagus by stretching and at the same time had scar tissue cut away by a laser. A week later I was eating. I am still eating only soft foods with a lot of gravy but its much tastier than jevity. Good luck and keep pushing. I sometime feel that patients are not so important to the medical profession once your treatment is done as such you need to be persistent. Ed