swallowing

Hi, My husband had head and neck cancer  19 years ago and was treated with radical radiation. After, he was fine and could eat almost anything but about 4 years ago he started chocking on most foods. He had to get a feeding tube because the radiation destroyed his ability to swallow. When they did an endoscopy, they couldn't even get a child's scope down to see what was going on in his throat. Now, my husband is tired of having the tube and he insisted that it be taken out. I was against it, but the doctors did what he wanted. He now lives on ice cream and oatmeal. Has anyone else had this problem and is there any kind of surgery to open up the throat or clear it out? My husband is getting too thin but he doesn't want the tube back. I would appreciate any kind of help.

Thank you,

On 9/28/2007 cheval wrote:

Hi, My husband had head and neck cancer  19 years ago and was treated with radical radiation. After, he was fine and could eat almost anything but about 4 years ago he started chocking on most foods. He had to get a feeding tube because the radiation destroyed his ability to swallow. When they did an endoscopy, they couldn't even get a child's scope down to see what was going on in his throat. Now, my husband is tired of having the tube and he insisted that it be taken out. I was against it, but the doctors did what he wanted. He now lives on ice cream and oatmeal. Has anyone else had this problem and is there any kind of surgery to open up the throat or clear it out? My husband is getting too thin but he doesn't want the tube back. I would appreciate any kind of help.

Thank you,

 

Cheval,

I don't know the answer to your question but I too have difficulty swallowing.  I have not had any treatment yet and I'm trying to understand what different treatments do.  One guy said that cutting things out early is better because your skin can heal.  After radiation , your skin might not heal as well.  What do you think of this?  Any info would be helpful.  God bless you and your husband.

Hi, The treatment that my husband had was back in 1989-90 and I am sure that  a lot has improved since then. He had double daily doses of radiation and it did save his life but he is paying for it now. He lost his hearing, saliva, had lots of tooth decay, and of course, now, he can not swallow food. At the time, they did what they had to, but his quality of life now is not good. Anyways, there isn't anything I can say to you except that progressive in treatment has advanced and I hope you will not have any problems.

cheval

Chevel:

I just returned from the hospital yesterday . I have not been able to eat or drink in 3years.  I have a feeding tube also.  The doctor was unable to use the endoscope in the office because he was unable to go down due to blockage.  In the hospital they went through my peg tube and found out that I have only the opening the size of a pen point.  I will be having surgery where they will use skin graft from my arm. This blockage has unable me to breath, I have a trache also.  My quality of life also sucks, I cannot eat, breath or speak, but I do not have a death wish. Eating oatmeal and ice cream sound like a death wish. 

Hi, You are in a place much worse than my husband and I am sorry but as you said you do not wish to die and that is a good thing. I think that my husband has given up. If it is not too much, could you tell me more about this surgery. What is it called and will they be opening up your throat to allow you to eat again?  We are on the East coast--what about you? I wish you the best

Cheval

Chevel:

I live on the East coast, I will be going to Beth Israel Hospital in New York City.  My Dr. is Marc Urken .  You can look up his credentials on the internet.  The surgery is reconstruction, as we all know , nothing is guarenteed.  Hope, is all we have left.

Give my regards to your husband.

Thank you for the information. You are very brave and I hope it all works out for you. Will you be having this surgery soon?

Cheval

Hi, I am on my 3 time dealing with this cancer.  First time was in 1987, I was 20 years old. I had the left side of my tongue removed, radiation therapy. Second time on my tongue again in 2006, again had partial glossectomy. Third time June, 2007 in my thryroid. This time I had my thyroid removed, trachea resection, three of the rings removed, all my lymph nodes removed, and left vocal cord removed. Afterward I had extensive radiation treatment, for the second time, and chemotherapy. Just finished those treatments two weeks ago.

After the first two times I recovered well, with swallowing and so on. This past time I have really struggled. But I have worked with a swallowing therapist in Augusta, GA at MCG.  She is wonderful and we are progressing slowly. Right now I eat through a PEG tube. Which I hate, because I am a mom and still have to cook supper for my family. Talk about a living nightmare. See food, cook food, cannot eat food. But I can take some sips of water by mouth.

Have any of you seen a swallowing therapist? My Surgeon reccomended this and she was absolutely correct. My Surgeon is Christine Gourin, she is awesome, one of the top five in the country.  With this type of cancer, don't play.  Find an expert, forgive me for being blunt but most doctors don't deal with this type of cancer often enough to really be up to date on the newsest types of treatment. My swallowing therapist is Lori Burkead, again wonderful. We use a treatment called vitastem. It is technique using electric stimulation to the throat area. You use it while you swallow to improve the muscles.

As for your husband, I know how he feels. I can no longer speak, eat or swallow my own spit half the time. I really struggle with the inability to communicate with my young children, 17,11,and 8. Or my husband. They try to understand me and we do okay, but it is so overwhelming. But I am not ready to give them up yet, so I go on. I am fairly young, only 40, so I would like to see them graduate from high school atleast. Please if your husband does not see a swallowing therapist, try that first. I hate surgery and after radiation treatment, skin and tissue does not respond well at all. My neck and tissue is so stiff I have very little mobility and a constant feeling of choking. I also use a type of facial massage daily to encourage the scar tissue to loosen up.

I hope I have helped you in some way.  Please let me know if I can give you any information. My doctor is moving to Johns Hopkins in Maryland soon. She is really one of the best and I am sure might be able to give you some advice.

Leann