We understand many insurance plans cover Thera-bite if it is prescribed. You can call Athos (go to web site) and the person there will tell you details -- that's what Barry did -- he's on Medicare and (according to he lady he spoke to) they get LOTS of Medicare people. They will send you a form which your ENT or oncologist fills out where they describe the "medical necessity" -- Barry's ENT wrote "patient is receiving radiation therapy for head and neck cancer; trismus is expected" and that was enough. Thera-bite billed Medicare.

Nelie -- our swallowing therapist gave Barry a series of exercises to strengthen his swallowing muscles, both his throat constrictors and his tongue -- since they are specifically directed at his case I am not sure they are appropriate for you, but the gal did say to do them 3x a day *in addition* to continuing to swallow stuff. He does notice a swallowing improvement in just two weeks, though I am sure some of that is because he has less inflammation. He can do some of the exercises more repetitions, as well. You might ask if there are any exercises (besides swallowing food) that might help. Barry's involve suction, pressing tongue against resistance, and some different swallowing manouvers.

Barry isn't ready for hamburgers yet but can now handle hot dogs. I am not sure if that is good or not<gr>!

Gail

I was given a couple of swallowing exercises by the first speech pathologist I went to (the one from the hospital), which I still try to do once or twice a day. He is kind of easygoing, though, and said "oh, do them once or twice a day" and I'm wondering if I should do them more. Anyway, MY ENT and the other speech pathologist seemed to really think it was more about that my throat was still very swollen that was giving me problems. That sounds hopeful if I assume the throat will eventually unswell. But what if it's permanently that way?

It's hard right now for me not to fear the worst--that I'll be stuck with only this swallowing ability for life. I mean, I know that's better than cancer taking my life but SO much of my (and my husband's) social activity revolves around eating! We live in a small city but a city that has the highest per capita number of restaurants of anyplace in the country (and it used to be the same for bookstores, not sure if that's still true since some small ones closed). Socializing with folks is often about trying a new restuarant or going to one of our favorites. If I can just get to where I can eat soft food like pasta and noodles I think we could still do this but when I'm so limited all of a sudden an evening that revolves around a meal out isn't so much fun. Anyway, it is certainly a motivator to do those exercises.....

And then there's singing. I used to haev a nice voice and I have been hoping eventually I could sing again but if my thorat remians so permanently swollen, maybe not. I guess I'm just facing some of those quality of life things.

I wsa prepared for the drymouth. Not the rest so much.

Nelie,

I too have wondered at times if where I am at is as good as it ever gets in the eating area. You are so right about the social impact - I have eaten out a few times but only with husband and kids. I still cough a lot when I am eating and I am very self-conscience about the whole thing and get anxious - and getting anxious leads to more difficulties trying to swallow. But I am so very grateful that I finally was able to go out again - I didn't eat out at all for 11 months. Although I have very limited food choices I can usually find some kind of fish that I can eat. The time issue is the thing, the servers keep coming back and asking if everything is OK - is something wrong with the food? My husband has gotten good about slowing his eating down or having another beer to try to finish up when I do, but a lot of times I just get a go box. Like you say, not as much fun as it used to be, but I have seen improvement and have to believe we will continue to improve as the months go by. We have to believe we will improve or we will get too depressed.

I was thinking about last year when I was at the same point as you post treatment. You mentioned trying scrambled eggs and having trouble - I remember that scrambled didn't work for me - the pieces of egg separated and it was like trying to swallow pieces of gravel. I tried them soft-fried in butter and left them runny (which I never liked before) and they were much easier to swallow. I recall eating quite a few eggs in the early days and still eat an omlette every morning. I have progressed to where I can have cheese and mild Pace salsa in them - breakfast is my favorite and easiest meal to eat.

Just hang in there and keep trying - it's all we can do.

Pam

Nelie - I can add my encouragement too. The healing took twice as long as they predicted for me. I am over two years out of tx and still getting little bits and pieces of function back. It seems like it was about 8 or 9 months before all the swelling went down in my mouth and throat. With the whacked lymph nodes not there to help, the swelling is persistent.

My PT had me gently massaging my own throat and neck to help with circulation. As the numbness eased, the massaging felt really good. Just easy, light pressure with the finger tips, in circles was all it took. Also, the swallowing exercises didn't seem to help much at the time I learned them, and it was tough to stay motivated to do them. But, my swallow did improve as the swelling receded. I didn't get all of mine back, but I have enough now to drink down meds with water and sips of a milkshake now and then. And that progress took all of a year. Be really patient with it, and double your time expecations for progress. With some luck you will get a bunch of it back. Don't give up. You can do it. Tom

I've found that in social situations it's the other people who feel awkward about my lack of ability to eat regular food. Most people are surprised to find that I don't eat "regular" food. It's just not that important to me. There are times where I would love to have a cheeseburger or pizza, but I can't see that happening anytime soon, if ever. I will fight the good fight and keep doing everything I can to regain as much as I can. With that being said, I know I'm healthier now than I was before.......no junk food, no fast food! Never surrender!

JOhn

Hi guys,
I have no idea whether this will work for any of you, but it is 'worth a shot'. I never had a peg and it's been a long time, but I had to cut everything into tiny pieces and make certain that the food had lots of moisture. I also ate it with lots of water and fortified milk(tbsp carnation Instant Breakfast in milk) for extra protein and calories.

When I had swallowing problems with things 'getting stuck in throat', I found that if I went to sink and cleared the blockage, that I could come back and eat the rest of the meal. It's like my swallowing mechanism had now figured out what it was supposed to do and now worked. Still works.

Nelie, I have no idea if this will work for you, but please give it a try. I find this still works for me. Read while you eat. It may help. Also, I'm not certain you are trying to eat the right foods. Mashed pots were a nono for me for years.
I would have thought scrambled eggs would be good, but try them gain after blockage. According to my sister, a PT,OT, speach person, liquids are harder to get down than soft foods. When my Dad my sick she mixed his mashed pots into his soup to make it easier to swallow. There is also something called 'thick it' that makes liquids easier to swallow. I think this is available at the drugstore.

Don't give up. Keep us posted. I'm rooting for you.

Take care,
Eileen

Eileen, as for this: "According to my sister, a PT,OT, speach person, liquids are harder to get down than soft foods."

I've heard this too but not in my case. The reason why is that I am taking very small sips when I swallow and I can push small amounts of thin or even slightly thicker liquids down the right way, even though my epiglottis isn't fully covering the trachea, by double swallowing--which is apparently what I learned to do unconsciously at some point when regular swallowing failed me, and now I am doing it more consciously and clearing my thorat after each double-swallow, just to be as safe as possible in terms of not having stuff go down teh worng way or irritate my larynx.

Anything with any solid pieces in it, or even very thick puddinglike texture, has more weight to it, doesn't get pushed back as far with a double swallow as liquid does, and is more likely to head down my trachea. Small solid pieces (like you have with scrambled eggs, diced peaches, etc.) actually tend to get stuck all over my throat and the roof of my mouth--and taking a sip of wtaer to rinse them out of there doesn't really help. Maybe it would if I could really swallow a largerrmouthful of water but I can't. I can only swallow with very small sips.

The mashed potatoes I had had extra milk and butter in them as well as a bunch of gravy and they were still just on the edge of being too thick for the double-swallowing technique to work.

I think thin liquids, such as water, are a bit harder than thicker liquids like soup, though. Creamy soups seem to be about the best texture and the milk in them means they mousten all the really dry spots on the roof of my mouth and back of my throat. And you're right about spitting things out and trying over. Even with just doing thin and thick liquids I still sometimes have to do that because I take a larger mouthful than I can handle swallowing or its like I just can't swallow altogether sometimes first thing in the morning--its definitely important to keep trying then!

I just did a 30 min session of swallowing coffee with soymilk in it, as I was reading the NY Times on the web, and just to give you an idea of how small the sips are (and how long each one takes when I have to double-swallow and then clear my throat between each sip), in half an hour I got down maybe half of a smallish coffee-cup of stuff. This is the sort of thing that makes me despair of ever getting off the PEG. But I think I just need to accept that the progress will be slow, and will only get better if I really do this 5 times a day. I did notice my swallow seemed to be stronger this morning in general.

I will keep you all posted. And thanks for the suggestions and support.

Nelie

Nelie,

Keep working at it. When I first tried to drink after my surgery and treatments, I had to use thick-it in everything and took the liquids by a spoonful. Now after a year, I'm close to being back to normal. That is with somewhat thicker liquids such as milk. Still have some trouble with thinner liquids such as water. Some times the progress is so minimal that we don't really notice it, yet it is there.

John

John, What are you able to eat now in terms of food? Are you off of tube feeding and if so, how long did that take you?

Nelie