swallow exercise therapy

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larry447
larry447 Member Posts: 22
edited March 2014 in Head and Neck Cancer #1
Can anyone tell me if they had gone through swallow exercise therapy and
achieved any success with being able to swallow solid foods again. I have been
doing several different exercises for a about 7 weeks now and don't feel like
i am making any headway toward being able to eat again. As some of you may
already know i am about 7 months post treatment and still cannot eat any
solid foods. I still have to feed through the peg tube and still have a trach
because of the severe swelling from the radiation. I keep hearing that it may
take quite some time before the swelling subsides but i am starting to lose faith
in that i am one of those unfortunate ones that will not heal from the radiation.
Getting back to the exercises i have read some articles whereby some people have
benefited from the exercises but i have not found any on this site. Some of these
exercises are a little difficult to do however i put forth my very best effort to
complete them which makes it very discouraging not to have any positive results.
I would appreciate any feedback regarding these exercises because i am about to
stop doing them and just except the fact that any type of normalcy for me is not
to be.
Thanks Larry

Comments

  • sweetblood22
    sweetblood22 Member Posts: 3,228
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    I wouldnt stop doing them.
    I wouldnt stop doing them. There have been others that have benefited from swallowing exercising but not sure if they had the same issues as you. If you don't keep doing the exercises then when the swelling does subside you won't be able to swallow because you didn't keep the muscles going.
    . Don't give up. I had that peg for 18 months but I didn't Have a trach. It can take a long time to heal. I am 20 months out and my tongue still looks bad and is very painful and I still have swelling. Radiation lasts a long time in your body. I would imagine like anything else some people take longer to heal because they got hit harder with side effects.

    Keep trying and don't give up. I know it's frustrating. I was beyond depressed when I couldnt eat anything for 9 months.
    I am sorry that it's not going better and easier for you.
  • MarineE5
    MarineE5 Member Posts: 1,031 Member
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    Don't give up
    Larry,

    Just as Sweet mentioned, don't give up. I mention this because on another site that I visit, there was a Marine over there that had the Trache and the Peg tube just like you. He had the swelling also, he finally was able to eat, but it was roughly 13 months of exercise and massage for the Lymphadema that he had causing the swelling.

    I still don't have any saliva and I read either here or the other site that a person got his saliva back roughly 6 years out of treatment. I am at that point now, but still have hope that my saliva may return. You continue to work at it and you will do it....

    My Best to You and Everyone Here
  • larry447
    larry447 Member Posts: 22
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    I wouldnt stop doing them.
    I wouldnt stop doing them. There have been others that have benefited from swallowing exercising but not sure if they had the same issues as you. If you don't keep doing the exercises then when the swelling does subside you won't be able to swallow because you didn't keep the muscles going.
    . Don't give up. I had that peg for 18 months but I didn't Have a trach. It can take a long time to heal. I am 20 months out and my tongue still looks bad and is very painful and I still have swelling. Radiation lasts a long time in your body. I would imagine like anything else some people take longer to heal because they got hit harder with side effects.

    Keep trying and don't give up. I know it's frustrating. I was beyond depressed when I couldnt eat anything for 9 months.
    I am sorry that it's not going better and easier for you.

    Thanks Sweet
    I guess every so often i need a boost to get me motivated toward recovery and you
    are surely one of the many actively involved on this site that says the right things.
    I know i am very grateful that us survivors have someone like you who is very caring
    and supportive that we can count on. I am usually on this site daily and i am aware
    of the many people you offer advice to help with their proble. I will resume my exercises
    tomorrow after getting my lymphedema treatments.
    Thanks Larry
  • larry447
    larry447 Member Posts: 22
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    MarineE5 said:

    Don't give up
    Larry,

    Just as Sweet mentioned, don't give up. I mention this because on another site that I visit, there was a Marine over there that had the Trache and the Peg tube just like you. He had the swelling also, he finally was able to eat, but it was roughly 13 months of exercise and massage for the Lymphadema that he had causing the swelling.

    I still don't have any saliva and I read either here or the other site that a person got his saliva back roughly 6 years out of treatment. I am at that point now, but still have hope that my saliva may return. You continue to work at it and you will do it....

    My Best to You and Everyone Here

    thanks MarineE5
    Like i had told sweet it is people like you and her who really cares about
    survivors having problems and offer your advice and help. I plan on continuning
    my exercises tomorrow when i return from my lymphedema treatment. My therapist
    is telling me that with the treatments she will be able to get rid of the neck
    lymphedema and the swelling inside the throat.
    I am assuming you were inthe marines and your rank was E5. I was in the Navy E4.
    Thanks again, Larry
  • larry447
    larry447 Member Posts: 22
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    MarineE5 said:

    Don't give up
    Larry,

    Just as Sweet mentioned, don't give up. I mention this because on another site that I visit, there was a Marine over there that had the Trache and the Peg tube just like you. He had the swelling also, he finally was able to eat, but it was roughly 13 months of exercise and massage for the Lymphadema that he had causing the swelling.

    I still don't have any saliva and I read either here or the other site that a person got his saliva back roughly 6 years out of treatment. I am at that point now, but still have hope that my saliva may return. You continue to work at it and you will do it....

    My Best to You and Everyone Here

    thanks MarineE5
    Like i had told sweet it is people like you and her who really cares about
    survivors having problems and offer your advice and help. I plan on continuning
    my exercises tomorrow when i return from my lymphedema treatment. My therapist
    is telling me that with the treatments she will be able to get rid of the neck
    lymphedema and the swelling inside the throat.
    I am assuming you were inthe marines and your rank was E5. I was in the Navy E4.
    Thanks again, Larry
  • sweetblood22
    sweetblood22 Member Posts: 3,228
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    larry447 said:

    Thanks Sweet
    I guess every so often i need a boost to get me motivated toward recovery and you
    are surely one of the many actively involved on this site that says the right things.
    I know i am very grateful that us survivors have someone like you who is very caring
    and supportive that we can count on. I am usually on this site daily and i am aware
    of the many people you offer advice to help with their proble. I will resume my exercises
    tomorrow after getting my lymphedema treatments.
    Thanks Larry

    You are most welcome.
    We all need motivation every so often. I know I need more than motivation. I need a major kick in the keistser as I can be slightly more stubborn than most, so I'm told. Not that I believe it. *sigh*

    I guess I just know what it's like to have to go it alone during treatment and I just think I need to try and support people who are where I was or am now. I know how scared, frustrated and lost I have been and I don't want what I felt to be in vain and the only way to make that happen is to pay it forward. I wish I could do more, but thank you.
  • MarineE5
    MarineE5 Member Posts: 1,031 Member
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    larry447 said:

    thanks MarineE5
    Like i had told sweet it is people like you and her who really cares about
    survivors having problems and offer your advice and help. I plan on continuning
    my exercises tomorrow when i return from my lymphedema treatment. My therapist
    is telling me that with the treatments she will be able to get rid of the neck
    lymphedema and the swelling inside the throat.
    I am assuming you were inthe marines and your rank was E5. I was in the Navy E4.
    Thanks again, Larry

    You're Welcome
    Larry,

    Thank you for your kind words. I am only one of many that make up a TEAM here. Each person, whether they are a newbie or a survivor, has something to offer in each question posted here.

    The newer patients have a newer knowledge of the newest operations and treatments available compared to people like myself that traveled this road years ago. When I had my operation, the Robotic operation hadn't really started in the Head and Neck yet. Now it is being used more and more with fewer side effects in the recovery period.

    I am glad to hear that the Therapist told you that she will be able to get you where you need to be to move ahead and get the swelling down in your neck and throat.

    Yes, you are correct, Marine E-5 Sgt. RVN 68/69.

    My Best to You Navy, and Everyone Here
  • CajunEagle
    CajunEagle Member Posts: 408
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    larry447 said:

    thanks MarineE5
    Like i had told sweet it is people like you and her who really cares about
    survivors having problems and offer your advice and help. I plan on continuning
    my exercises tomorrow when i return from my lymphedema treatment. My therapist
    is telling me that with the treatments she will be able to get rid of the neck
    lymphedema and the swelling inside the throat.
    I am assuming you were inthe marines and your rank was E5. I was in the Navy E4.
    Thanks again, Larry

    Went through Swallowing Therapy August-November '09
    Completed concurrent radiation chemotherapy in June of 09 for Stage 4 Tonsil Cancer, and it took two months to get set up with the pathologist....due to communication faux pas. Was motivated to re-learn swallowing techniques to get rid of the Peg Tube, and also not to have to go through any more Barium Tests. Hated it. Therapy consisted of excercises of sipping small amounts of water.....clearing my throat...attempting to swallow..if successful, clear throat again and take another sip....clear throat....Etc....Etc.. for repetitions of 20 times, then 20 repetitions of verbally going EEEEEEEEE from low pitch to high, then 20 reps of laying on my back and lifting my head to see my feet. These three excercises were done 5 times a day.....each day for 80 straight days. I had a very swollen epiglotis that would not clear properly and shut the windpipe while swallowing, therefore I had a good chance of aspirating and chocking in anything that tried to go down the esophigus. Currently eating most anything that I want with sips of water.
    US Coast Guard....67-71...E-4, then E-2, then E-3.....then up to E-4...then they paid for my education :).

    Larry
  • Lena Rose
    Lena Rose Member Posts: 73
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    Hi Larry
    My husband is also about 7 months post treatment (ended June 2010). He still has the PEG. He's been going to swallowing therapy for about a month now (he should have started many months ago). He does his exercises 5x a day. He is making slow but steady progress. He's been eating about 2 meals a day, slowly with lots of water and only using the PEG for one meal. Your tongue is a muscle and it's going to take some time to get some strength back. Are you able to eat soups and drink? Don't give up! Keep on doing those exercises!!
  • larry447
    larry447 Member Posts: 22
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    Went through Swallowing Therapy August-November '09
    Completed concurrent radiation chemotherapy in June of 09 for Stage 4 Tonsil Cancer, and it took two months to get set up with the pathologist....due to communication faux pas. Was motivated to re-learn swallowing techniques to get rid of the Peg Tube, and also not to have to go through any more Barium Tests. Hated it. Therapy consisted of excercises of sipping small amounts of water.....clearing my throat...attempting to swallow..if successful, clear throat again and take another sip....clear throat....Etc....Etc.. for repetitions of 20 times, then 20 repetitions of verbally going EEEEEEEEE from low pitch to high, then 20 reps of laying on my back and lifting my head to see my feet. These three excercises were done 5 times a day.....each day for 80 straight days. I had a very swollen epiglotis that would not clear properly and shut the windpipe while swallowing, therefore I had a good chance of aspirating and chocking in anything that tried to go down the esophigus. Currently eating most anything that I want with sips of water.
    US Coast Guard....67-71...E-4, then E-2, then E-3.....then up to E-4...then they paid for my education :).

    Larry

    Hi Cajun
    Nice to hear from you and your success, It took me about 4 months to finally get my
    ent to refer me to therapy. He kept telling me how bad the swelling was and didn't
    seem to concern about me not being able to eat. I was doing some of the same exercises
    as you and done them for about 7 weeks. The EEEEEEEEE from low to high, head lifting
    30times and just lifting the head and holding for 30 seconds. I was doing pretty good
    and drinking about 12-16 ounces of water a day. It seems like i started having sinus
    problems for the last couple of weeks and i started aspirating more. The exercises are
    a little difficult for me because i have a trach in my throat and when i do the head lifts
    it irritates some. I am glad to hear about your success and i think that will motivate
    me to work a little harder with the exercises.
    Thanks Larry
  • larry447
    larry447 Member Posts: 22
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    Went through Swallowing Therapy August-November '09
    Completed concurrent radiation chemotherapy in June of 09 for Stage 4 Tonsil Cancer, and it took two months to get set up with the pathologist....due to communication faux pas. Was motivated to re-learn swallowing techniques to get rid of the Peg Tube, and also not to have to go through any more Barium Tests. Hated it. Therapy consisted of excercises of sipping small amounts of water.....clearing my throat...attempting to swallow..if successful, clear throat again and take another sip....clear throat....Etc....Etc.. for repetitions of 20 times, then 20 repetitions of verbally going EEEEEEEEE from low pitch to high, then 20 reps of laying on my back and lifting my head to see my feet. These three excercises were done 5 times a day.....each day for 80 straight days. I had a very swollen epiglotis that would not clear properly and shut the windpipe while swallowing, therefore I had a good chance of aspirating and chocking in anything that tried to go down the esophigus. Currently eating most anything that I want with sips of water.
    US Coast Guard....67-71...E-4, then E-2, then E-3.....then up to E-4...then they paid for my education :).

    Larry

    Hi Cajun
    Nice to hear from you and your success, It took me about 4 months to finally get my
    ent to refer me to therapy. He kept telling me how bad the swelling was and didn't
    seem to concern about me not being able to eat. I was doing some of the same exercises
    as you and done them for about 7 weeks. The EEEEEEEEE from low to high, head lifting
    30times and just lifting the head and holding for 30 seconds. I was doing pretty good
    and drinking about 12-16 ounces of water a day. It seems like i started having sinus
    problems for the last couple of weeks and i started aspirating more. The exercises are
    a little difficult for me because i have a trach in my throat and when i do the head lifts
    it irritates some. I am glad to hear about your success and i think that will motivate
    me to work a little harder with the exercises.
    Thanks Larry
  • larry447
    larry447 Member Posts: 22
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    Lena Rose said:

    Hi Larry
    My husband is also about 7 months post treatment (ended June 2010). He still has the PEG. He's been going to swallowing therapy for about a month now (he should have started many months ago). He does his exercises 5x a day. He is making slow but steady progress. He's been eating about 2 meals a day, slowly with lots of water and only using the PEG for one meal. Your tongue is a muscle and it's going to take some time to get some strength back. Are you able to eat soups and drink? Don't give up! Keep on doing those exercises!!

    Hi Lena
    Thanks for your respose, I have now heard from two people are doing better with
    the exercises. I was doing pretty good with the exercises and about two weeks ago
    i started aspirating more when sipping water. Prior to that i was drinking water
    with very little aspiration. I really got discouraged when i started aspirating
    more and discontinued the exercises. I did develope a sinus infection and maybe that
    had something to do with the aspiration. After hearing the positives from two survivors
    i will get back in stride and continue my exercises. I guess it will take me quite some
    time for my recovery because og the severe damages from the radiation.
    Thanks Larry
  • larry447
    larry447 Member Posts: 22
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    Lena Rose said:

    Hi Larry
    My husband is also about 7 months post treatment (ended June 2010). He still has the PEG. He's been going to swallowing therapy for about a month now (he should have started many months ago). He does his exercises 5x a day. He is making slow but steady progress. He's been eating about 2 meals a day, slowly with lots of water and only using the PEG for one meal. Your tongue is a muscle and it's going to take some time to get some strength back. Are you able to eat soups and drink? Don't give up! Keep on doing those exercises!!

    Hi Lena
    Thanks for your respose, I have now heard from two people are doing better with
    the exercises. I was doing pretty good with the exercises and about two weeks ago
    i started aspirating more when sipping water. Prior to that i was drinking water
    with very little aspiration. I really got discouraged when i started aspirating
    more and discontinued the exercises. I did develope a sinus infection and maybe that
    had something to do with the aspiration. After hearing the positives from two survivors
    i will get back in stride and continue my exercises. I guess it will take me quite some
    time for my recovery because og the severe damages from the radiation.
    Thanks Larry
  • Hondo
    Hondo Member Posts: 6,636 Member
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    larry447 said:

    Hi Lena
    Thanks for your respose, I have now heard from two people are doing better with
    the exercises. I was doing pretty good with the exercises and about two weeks ago
    i started aspirating more when sipping water. Prior to that i was drinking water
    with very little aspiration. I really got discouraged when i started aspirating
    more and discontinued the exercises. I did develope a sinus infection and maybe that
    had something to do with the aspiration. After hearing the positives from two survivors
    i will get back in stride and continue my exercises. I guess it will take me quite some
    time for my recovery because og the severe damages from the radiation.
    Thanks Larry

    Hi Larry
    I know the feeling, my jaw can’t open enough for the doctors to help open the throat for me to swallow any better, it is a living hell everyday when food gets stuck but I learned to get it down. I am not sure what type of exercises you are doing, but would sure like to know if you don’t mind.

    Thanks
    Hondo
  • sportsman
    sportsman Member Posts: 97
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    Keep Trying
    Larry: I am now almost four years post treatment which I will celebrate at the end of February. I am one of those unfortunate ones like many others on this site that was hit hard by side effects of the radiation. I had the PEG in between five and six months. I literally hated the thing but it kept me alive. I did not have a trach however like you have. When I did start trying to eat again I could swallow only a couple bites of pudding and sip on a Ensure. I knew inorder to have the tube removed that I must maintain my weight by eating on my own for a period of time. I had dropped fifty pounds during treatment but as I started to take in some food I made some very small weight gains and the tube was removed. I now have severe lymphedema which is in my neck area, facial area (jaws) and even my tongue. I have no saliva a burned up thyroid, stiff neck, problems with my teeth and etc.. Yes I have gone through swallowing exercises had modified barium swallow tests, barium swallow tests, worked with a speech pathologist, have had esophagus dilated five times, done vital stem theraphy and basically everything I have heard of to do. It takes much discipline to do the swallowing exercises and I to could not see where they were helping me that much. My wife learned to do the lymphedema massages through the physical therapist. This was not hard for her to learn and helps me greatly. Again it is hard to be dedicated to keep up with this as both my wife and I have very busy lives. And yes there is life after this terrible cancer but it is a new normal and much more difficult life. I have made many adjustments in my lifestyle socially and physically but I will not give up. I have read on this site where people got their saliva back many years after treatment. I think if I had saliva it would make my swallowing much better, certainly help with my dental problems as well as help with my digestive system by eliminating reflux. This site has been a blessing to me to hear what my fellow "warriors" are doing to cope. Sometimes I get a little depressed reading about all these terrible side effects but the infomation I get is well worth the little depression. I pray that you will improve and as I say hang in there and try any and everything to see if it will help you. God Bless
  • WayneAR
    WayneAR Member Posts: 2
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    larry447
    I had a tube for a year & half. Had heavy doses of Rads. for 6 weeks. I am currently MR."C"
    free. Still have trouble swallowing certain foods & don't really taste to much. The VA has told me I'll never be like before. Somewhere on this website I listed 4 exercises that really helped me. Honestly, I did them twice a day every day & sometimes even more. Don't give up! I still do the swallowing thecs. every morning. It will help,just takes time.
    Good Luck.
  • larry447
    larry447 Member Posts: 22
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    Hondo said:

    Hi Larry
    I know the feeling, my jaw can’t open enough for the doctors to help open the throat for me to swallow any better, it is a living hell everyday when food gets stuck but I learned to get it down. I am not sure what type of exercises you are doing, but would sure like to know if you don’t mind.

    Thanks
    Hondo

    swallow exercise
    Hi Hondo, would have responded sooner but my computer was out of whack for a couple of days.
    The exercises i was referring to is called the Shaker exercise. One is called the isometric,
    it involves three consecutive head lifts for 60 sec. with a 60 sec. rest period between each
    head lift. You lie on your back and just lift your hear without lifting your shoulders, after
    60 sec. you rest your head for 60sec and then repeat two more times. These should be done three times a day. The other one is called the isokinetic. This involves thirty consecutive
    head lifts without holding. This exercise should also be done three times daily. Do not lift
    the shoulders when lifting your head. You can read more about these exercises on the internet
    under Shaker exercise. One of the sites has a video showing how to do. Another exercise is you hold the tip of your tongue between your teeth then swallow your saliva while you keep your tongue between yor teeth. I also prduce a high strained squeal EEEEEEEEE from low pitch
    to high pitch. The last two exercises should be done 10xset 7 set per day.
    Hope this will help you.
    Larry
  • sue5749
    sue5749 Member Posts: 170
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    WayneAR said:

    larry447
    I had a tube for a year & half. Had heavy doses of Rads. for 6 weeks. I am currently MR."C"
    free. Still have trouble swallowing certain foods & don't really taste to much. The VA has told me I'll never be like before. Somewhere on this website I listed 4 exercises that really helped me. Honestly, I did them twice a day every day & sometimes even more. Don't give up! I still do the swallowing thecs. every morning. It will help,just takes time.
    Good Luck.

    husband going through the same think
    My husband is going through the exact same issues as very one esle here. But the thing that his docters said they had to stop the treatments because he cannot swollow, So what about the cancer? If he can't take the treatments then will the cancer get worse?
  • larry447
    larry447 Member Posts: 22
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    sue5749 said:

    husband going through the same think
    My husband is going through the exact same issues as very one esle here. But the thing that his docters said they had to stop the treatments because he cannot swollow, So what about the cancer? If he can't take the treatments then will the cancer get worse?

    Hi sue
    What treatments are you talking about stopping because he can,t swallow.Are you referring to
    therapy exercise or radiation. If it is the rqadiation you are talking about I could not
    eat with 4 weeks left of treatments and trey contiued my treatments.