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Disappointed with medical communities treatment of patients with achalasia or dysphagia

Posted , 4 users are following.

1blindmice
1blindmice

I actually carry around flyers to give to doctors who don't know me and are seeing me for a different reason.  I am finding that even my family doctor had no idea though she had all notes and test results in my file.  I hate when reading symptons "possible feeling of something stuck in throat" it's not a feeling, it is something stuck in the throat! Watched the video swallow, right near my heart everything gets stuck. Water typically gets it down. Got into an arguement with ER doctor telling me chest pains was an anxiety attack and I showed him my flyer and my folder with mamometry test and he being an ass goes I am looking for the pressures, It's right there on the bottom where it read RESULTS.  He was an ass and I dealt with him several times because the spasms can get so bad and that is why they are called non cardiac chest pains. We have family dinner every Wednesday at mother in laws.  Now I have a 30 year old nephew who only eats chicken and mac-n-cheese.  She fixes these items for him.  Me, never anything "special" so I don't eat and if I bring something for me specially everyone is looking at me like why aren't you sharing.  Sorry I didn't make enough yogurt and fruit mixture for the 12 of you.  Don't you want spaghetti with large sausage in this wonderfully acidic sauce.  Nah, I'll pass and eat the crisp bread.  Just there isn't much support or understanding and it gets frustrating.  But I am strong, I can handle everything, as I am told by those close to me. Yeah I am strong enough not to back hand you when you say lets each lunch together, you like bar-b-que, right? 

0 likes, 5 replies

5 Replies

  • kayla19404
    kayla19404 1blindmice

    Posted

    I understand how you feel. Some doctors really dont make any of this better or easier considering the fact that no doctor really knows the cause or a cure. Im sorry that you had such negative experiences with doctors. As for eating with other people I tend to avoid those situations partly for the situation you described above. If you ever need anyone to talk to about this you are more than welcome to message me. Hope you find a doctor that actually listens to what you say and show them.
  • Robert13450
    Robert13450 1blindmice

    Posted

    I feel your pain (Blindmice). The first series of so called doctors I went to told me to my face that it was all in my head and wanted me to come 3 times a week so they could teach me how to swallow. I don't think I should say on here what I told them. Then for 5 years doctors couldn't figure it out. Like you I would get severe chest pains and I would look at my wife and say should I go to the hospital or not because it felt like I was having a heart attack. I tell the doctors this and for some reason they think it's funny! So long story short I find a doc he does POEM and cuts the valve out , problem solved. Nope, once I started eating regular food the acid had nothing stopping it from coming up my esophagus. So it did with ease. Last week it was so bad I think it damaged my vocal cords , couldn't talk . So doc wants more tests but knows he's doing another surgery. I hate to be all doom and gloom but I just see myself ending up eating the rest of my meals through a tube. Some doc saying I never said it was guaranteed!! I wish you luck my friend , these groups are great at least when we talk to people we know they get what we're talking about. I hope to can find a way to feel better. Take care

    • AlanJM
      AlanJM Robert13450

      Posted

      You do need to be aware of the persistent reflux.   Whether medication can combat this sufficiently I do not know, but it is one of the issues that can come after POEM.   There is a device called Linx that consist of a magnetic bead bracelet that mnight feasibly be a solution.   It might end up being in the clinic for a specialist in anti-reflux surgery.
  • AlanJM
    AlanJM 1blindmice

    Posted

    There is a description of Achalasia that fits on to two sides of A4 that you can download from the website of the Oesophageal Patients Association (under The oesophagus, and Achalasia) if this helps?
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