STILL CANNOT SWALLOW REGULAR FOOD

luv4lacrosse
luv4lacrosse Member Posts: 1,410 Member
edited March 2014 in Head and Neck Cancer #1
I will be six weeks post treatment this Wednesday and the only thing I can swallow without trouble is liquids. My ENT visit 2 weeks ago revealed allow of esophageal swelling and a Barium Swallow Test revealed the same thing.

My Medical Team wants to give it more time, and they put me on Prednisone for the swelling.

Am I rushing things?

Did any of you end up having to have any surgical procedure done to aid in swallowing?

I am so ready to eat, and this is really bumming me out.

Thanks

Mike

Comments

  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #2
    I've had three stretchings.
    I've had three stretchings. Two after rads. Can you only get liquids? How about yogurt? I couldn't even get down yogurt.
  • luv4lacrosse
    luv4lacrosse Member Posts: 1,410 Member
    #3
    sweetblood22 said:

    I've had three stretchings.
    I've had three stretchings. Two after rads. Can you only get liquids? How about yogurt? I couldn't even get down yogurt.

    swallowing
    I have not tried. Mashed Potatoes was miserable.
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #4
    luv4lacrosse said:

    swallowing
    I have not tried. Mashed Potatoes was miserable.

    Yep. I could do yogurt
    Yep. I could do yogurt after the first stretching but not mashed potatoes. The potatoes were too grainy and hurt my tongue. I had to do blended yogurt or yoplait whips. The whips are like 'air'. That first stretching after rads was in October (was done 5/15 with rads). They went from 2mm to 9mm then I could swallow shakes and yogurt, bananas and avocado.
  • MJ70
    MJ70 Member Posts: 75
    #5
    swallowing
    Mike:

    My treatment ended May of 2004 and i could not swallow real food until Sept of 04... one month after they took out my tube.. and it was .. Onion Soup at Red Robin in Califonia and the next day in Ashland, Oregon it was Pancakes with lots of syrup...Whoopy...I remember it well... I think you just need some more time..Good luck.. it will happen..Mel
  • luv4lacrosse
    luv4lacrosse Member Posts: 1,410 Member
    #6
    sweetblood22 said:

    Yep. I could do yogurt
    Yep. I could do yogurt after the first stretching but not mashed potatoes. The potatoes were too grainy and hurt my tongue. I had to do blended yogurt or yoplait whips. The whips are like 'air'. That first stretching after rads was in October (was done 5/15 with rads). They went from 2mm to 9mm then I could swallow shakes and yogurt, bananas and avocado.

    STRETCHING
    What exactly is the stretching procedure? Do they put you under for this?
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #7
    MJ70 said:

    swallowing
    Mike:

    My treatment ended May of 2004 and i could not swallow real food until Sept of 04... one month after they took out my tube.. and it was .. Onion Soup at Red Robin in Califonia and the next day in Ashland, Oregon it was Pancakes with lots of syrup...Whoopy...I remember it well... I think you just need some more time..Good luck.. it will happen..Mel

    Yes, they put me out. I
    Yes, they put me out. I think it depends on the person tho. I have to be put on a ventalator and my mouth doesn't open wide enough and it's a real pain in the a@@. But for normal people it's not such a big deal. The first time they did it after rads, they went though my peg tube hole. I also had a couple of hairy moments, but as I said, I am not normal. Lol. Pretty much they just give you stuff and you wake up stretched. :) sometimes they have to do it in stages. They don't want to rip or tear anything. I guess for me, another tricky thing is that my stricture is up very high, and that is harder to stretch out. Hoping your swelling will go down on it's own. It continues to get a little better for me month by month. I got my tube out the end of sept and j think I was 94 lbs. I am 101.5 now. Added a lot more things to my diet. This I can finally live with. I'm not miserable cause I cannot eat anymore.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #8
    sweetblood22 said:

    Yes, they put me out. I
    Yes, they put me out. I think it depends on the person tho. I have to be put on a ventalator and my mouth doesn't open wide enough and it's a real pain in the a@@. But for normal people it's not such a big deal. The first time they did it after rads, they went though my peg tube hole. I also had a couple of hairy moments, but as I said, I am not normal. Lol. Pretty much they just give you stuff and you wake up stretched. :) sometimes they have to do it in stages. They don't want to rip or tear anything. I guess for me, another tricky thing is that my stricture is up very high, and that is harder to stretch out. Hoping your swelling will go down on it's own. It continues to get a little better for me month by month. I got my tube out the end of sept and j think I was 94 lbs. I am 101.5 now. Added a lot more things to my diet. This I can finally live with. I'm not miserable cause I cannot eat anymore.

    Normal People
    We are not all normal people, some of us are of the clan ~ Abi-Normal....
  • micktissue
    micktissue Member Posts: 430
    #9
    8 months without swallowing
    Hey Mike, there are several of us who went a long time without swallowing food. Dawn (sweetblood) was 18 months (I think). Kent was more than a year (I think). Joe (spoccerfreasks) had at least 3 procedures. I was lucky that a visit to the OR for an esophageal dilation did the trick. I will get another procedure on the 8th, but it will be a stretching rather than a full on, general anesthetic, surgery.

    Are you rushing things? Maybe. Your throat may need more time to heal. However, in retrospect I wish I had kept swallowing back in March when I could at least get liquids down. Whatever the timing, I'd suggest keep pushing yourself to swwallow what you can to make the eventual dilation less intrusive.

    Best,

    Mick
  • Fire34
    Fire34 Member Posts: 365
    #10
    Exercises
    Mike
    Did your ENT prescribe swallowing exercises? I just had my 12 month at mine and she said never quit the exercises as they should become part of your daily life. It is hard to try and remember but the simple ones seem to work best.
    My wife was a pusher and had me eating scramble eggs about 4 weeks out and they seemed ok. The Ensure didn't hurt etither.
    Best Wishes & Prayers on your recovery
    Dave
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #11
    micktissue said:

    8 months without swallowing
    Hey Mike, there are several of us who went a long time without swallowing food. Dawn (sweetblood) was 18 months (I think). Kent was more than a year (I think). Joe (spoccerfreasks) had at least 3 procedures. I was lucky that a visit to the OR for an esophageal dilation did the trick. I will get another procedure on the 8th, but it will be a stretching rather than a full on, general anesthetic, surgery.

    Are you rushing things? Maybe. Your throat may need more time to heal. However, in retrospect I wish I had kept swallowing back in March when I could at least get liquids down. Whatever the timing, I'd suggest keep pushing yourself to swwallow what you can to make the eventual dilation less intrusive.

    Best,

    Mick

    I had my peg for 18 months.
    I had my peg for 18 months. I had my last meal on 4-19-09 then I didn't drink or eat until October 09. When they stretched it in October I could do liquids. No food really. Only yogurt. Then I had another stretch in January with very little success. I could do bananas and avacados and very mushy Amish macaroni salads. Tortilla wraps with cream cheese and one slice of turkey deli meat and one slice of cheese. Very very few things and I choked a lot. It has been getting better on it's own very, very slowly. Maybe the swelling or what ever was damaged is shrinking. So I went 5/6 months with no food or drink and 8/9 months no food. My mouth still had sores and bled daily from April to October. My tongue still feels scalded and it's been 19 months or so that I finished rads. It's very hard to chew and process food when your tongue doesn't work right. I cannot get the food out of my teeth. It's really annoying. Sometimes it just takes some of us longer.
  • Greg53
    Greg53 Member Posts: 849
    #12
    Fire34 said:

    Exercises
    Mike
    Did your ENT prescribe swallowing exercises? I just had my 12 month at mine and she said never quit the exercises as they should become part of your daily life. It is hard to try and remember but the simple ones seem to work best.
    My wife was a pusher and had me eating scramble eggs about 4 weeks out and they seemed ok. The Ensure didn't hurt etither.
    Best Wishes & Prayers on your recovery
    Dave

    6 weeks
    Hey Mike,
    Sorry you're having a rough go on the eating thing. Due to the sores and mucus and who knows what else, it took me 6 weeks before I finally got food down. Wasn't much, pudding to be exact, but it was a start and has only gotten better. Hopefully it will turn for you soon. Positive thoughts headed your way!
    Greg
  • Pam M
    Pam M Member Posts: 2,196
    #13
    Hope It's Soon
    Sorry your swallowing isn't where you need it to be yet.

    I got stretched after treatment; I was put under for the tube removal, and they did the dilation then.
  • MarineE5
    MarineE5 Member Posts: 1,030 Member
    #14
    Lymphedema
    Hello Mike,

    I am sorry to hear that you are still having some trouble swallowing foods. Excuse me for not remembering exactly what you had done to you between any surgery and your treatments. I tend to forget who had what done to them on here and another board that I visit.

    I would like to ask you if you had a neck disection? if I am correct, I seem to remember that you were going to have one. If this is the case, does your face and neck feel stiff and puffy? You could be experencing a case of Lymphedema, the back up of the lymph system in the neck and face. I had this happen to me after my treatments ended.

    With the back up of the fluids of the lymph system, our neck and face swell, not only on the outside, but also on the inside. Our throats actually narrow and eating becomes a chore. Once our swelling goes down, the passageway then expands and we can try other foods. At first all I was eating was soft foods.

    If this is the case, your Doctor can have you see a Physical Therapist that specializes in cancer patients. I went to see one and she showed me how to do a gentle massage to get the lymph system moving and also to strenghten my right shoulder from my radical neck disection. I hope things get better for you shortly.

    My Best to You and Everyone Here
  • charles55
    charles55 Member Posts: 87
    #15
    dilation made all the difference
    Mike, I consider you still ahead of the game. I took five months post radiation to just start to do soft solid foods. But the real kick came after the dilation performed seven months post radiation. Overnight, I went from choking (aspirating) on everything to choking on nothing. That was heaven. They put me under for the procedure and inserted ever larger tubes into the top part of my esophagus. Sounds terrible but it made a wonderful difference. You might have a sore throat afterwards, but that is not much of a threat since all of us could write a book on having sore throats. I wish there was a dilation procedure for salivary glands because I would sure love to have the moisture again.

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