The New Normal

SuzJ
SuzJ Member Posts: 446 Member
edited June 2023 in Head and Neck Cancer #1

I hate that phrase, I don't need a NEW normal, I'd like my old normal back, please and thank you!

What's caused this blip? My oesophagus (I cant spell) is now really small, as in REALLY small, as it took my over 5 minutes to get a 12.5 mm barium tablet down. Its around 1 cm..

I'm back on the roundabout, barium swallows, upper endoscopies,.

On the plus side, I'm losing weight again, - about 10 a month! Yay! Go me!

Ignore my sarcasm, my new diet, is the 1 cm x 6 inches diet. Don't even go there. Basically i can eat around 6 inches worth of food before I start to choke.

Comments

  • wbcgaruss
    wbcgaruss Member Posts: 2,466 Member
    #2

    Hey, Suz, I know where you're at we would all like to turn the clock back to a time before cancer. Sorry about your restricted esophagus. That darn radiation has no mercy on the good tissue. So on the plus side, you are able to eat a tiny bit now, hopefully, you will get some improvement over time.

    With the barium swallows and upper endoscopies, what are they trying to accomplish? Would they be able to do dilations and open your esophagus further so you can swallow somewhat better?

    Hang in there Suz I know you have a tough time of things.

    Wishing You the Best

    Take Care, God Bless-Russ

  • SuzJ
    SuzJ Member Posts: 446 Member
    #3

    At the beginning, it was thought it could be an ulcer, which of the two, they were looking for, ulcer was wayy better, BUT, so far ulcer isn't it.

    Biopsies came back negative, yay!

    But I am still choking on everything, my meals fit on a saucer with room to spare. Even liquid is making me cough.

    I guess I should get my ENT Onc involved, as we are wandering into his territory.

    update so as far as rare stuff, it seems I've hit the jackpot lol

    Achalasia - basically the sphincter that sits between your oesophagus and your stomach, tightens so nothing will pass. That's my new diet plan.

    Now I'm just waiting to see what they want to do.

  • wbcgaruss
    wbcgaruss Member Posts: 2,466 Member
    #4

    Suz I agree get your ENT involved plus a good speech therapist. Your ENT should know one. They do everything head and neck like swallowing, breathing, eating, etc. Also, check and see if they think dilations may help open you up a bit I had 4 of them and they help. A Gastroenterologist may be able to help with your situation also and they are the ones that do the dilations. Also, the speech therapist may recommend a swallow test, have you ever had one? They can have you swallow and see exactly what is happening when you swallow and see problems and help with solutions.

    https://www.youtube.com/watch?v=dRvYL_TAtKI

    No Matter what I am Wishing You the Best

    Take Care, God Bless-Russ

  • SuzJ
    SuzJ Member Posts: 446 Member
    #5

    Had the swallow etc

    She said it was the best she'd ever seen from a BoT cancer patient

    It's beyond the scope of my ENT, as it's not between my stomach and oesophagus

    Going to see him anyways, I've been hiding from him for over a year ;)

  • wbcgaruss
    wbcgaruss Member Posts: 2,466 Member
    #6

    Well, Suz I am hoping and praying you find the answer and get this resolved. I just know it would make you feel so much better.

    Take Care, God Bless-Russ

  • SuzJ
    SuzJ Member Posts: 446 Member
    #7

    Its something called Achalasia, my LES has frozen (can happen to cancer patients) mines frozen, pretty much shut.

    Having another upper endoscopy, and try to dilate it again, but if that doesn't work (apparently it has to be done every few months - ugh! - next is a surgery, where they slice the oesophagus, and to recreate the LES they wrap your stomach around the oesophagus to make a kinda LES substitute.

  • wbcgaruss
    wbcgaruss Member Posts: 2,466 Member
    #8

    Dear Suz, you are certainly facing a challenge with this situation. I have never heard of this condition before. I hope they can alleviate your problem with one of the procedures you mentioned. Who wants surgery, but if it can fix this situation for you it would be worth it. I found some information on your condition and maybe it will help others. It looks like this can be managed. May God Bless you and protect you as you move forward on this.

    Take Care, God Bless-Russ

    Achalasia

    A rare disorder making it difficult for food and liquid to pass into the stomach.

    Achalasia results from damage to nerves in the food tube (esophagus), preventing the esophagus from squeezing food into the stomach. It may be caused by an abnormal immune system response.

    Symptoms include a backflow of food in the throat (regurgitation), chest pain, and weight loss.

    Achalasia can usually be managed with minimally invasive (endoscopic) therapy or surgery.

    Achalasia.jpg


    Achalasia 2.jpg


    Achalasia is a rare swallowing disorder that affects the esophagus (the tube between the throat and the stomach). In people with achalasia, the esophagus muscles do not contract properly and do not help propel food down toward the stomach.

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