Swallow issues

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aisha
aisha Member Posts: 8
in Head and Neck Cancer #1

After nearly 12 yrs of cancer free, finally the side effect has caught up with me. I am having major difficulty eating, have a permanent feeding tube since last year and affecting my speech. Doctors believed due to scar tissues from radiation and neck dissection. Have seen many speech and swallow therapists and nothing seems to help. It is frustrating. Now my last resort is acupuncture. Has anyone tried this. Open for different approach if you have any. 

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  • Hondo
    Hondo Member Posts: 6,636 Member
    #2
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    Hi Aisha

     

    I am sorry to hear this as I have the same problems, I lost the ability to swallow about two years ago and now live on a PEG tube. I tried the acupuncture and stuff nothing worked for me, you can read some of what I did on my all about me page, just click on my name. It is not so bad because I find I can eat just about anything by blending it up and putting it down my PEG tube. I still work full time and do a lot of traveling, so I always have a Magic Bullet with me so I can stop and get something to eat on the road. Just another adjustment in our life that we make, it is the price we pay to be alive and for me to be a part of my grandchildren’s life.

     

     

    Tim Hondo

  • lornal
    lornal Member Posts: 428
    #3
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    Swallowing

    Aisha, your story sounds exactly like my story, except I was 6 years cancer free.

    My ENT scoped, saw nothing, sent me for barium swallow - saw nothing.  Did this in August 2012 AND April 2013.  Then he sent me to a GI doc - I had my esphagus dilated with that GI 4 times - and then swtiched to a different hospital in June.  Had a number more.  Started losing my voice in September, and ended up with a feeding tube.  Had some more dilations, and in December, the GI doctor saw something he hadn't seen before.  Did a biopsy, and it was cancer.  Within a month, I ended up w/ a trach, and then got a total laryngectomy and had my esophagus rebuilt with a fore-arm flap.

    Up until the biopsy, all the doctors thought it was scar tissue from radiation.   Finally had a PET scan after the biopsy, and it lit up.

    If you haven't had one since this all started - push your doctors as hard as you can to get one.  4 or 5 doctors DID NOT SEE anything that led them to believe it was cancer.

    Anyway - now it is December again - I had a PET scan last friday - it was clean.

    And - I can eat just about anything I want!  I am back to work part-time (this second major surgery was much harder on my body - and it might not bounce back to 100%, but I'm here and enjoying life)

    Hope you can get the test and its nothing.

    Lorna

    2007 & 2014

     

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