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Your Experience With Alchalasia

Posted , 3 users are following.

DJ-RN
DJ-RN

Share your story about being diagnosed with Alchalasia, your symptoms, tips on things that help you live with it, surgery or procedures that you had, etc.

0 likes, 5 replies

5 Replies

  • JoyAsh
    JoyAsh DJ-RN

    Posted

    I was diagnosed in 2010 and had the HM in 2012. Had one pretty good year, but am back to having complications. Just had a barium swallow where they discovered I have a small hole in my esophagus and am now moving more towards mega-esophagus. Both scare the hell out of me! Waiting on my dr to call back with a new plan of action. I eat pretty much what I want excluding popcorn, cereals, and granola. Pasta, lettuce and pills are hard to get down as well. Too much liquid hurts like hell and too much bread makes it feel like I have cotton in my chest. Praying for an answer for some relief and a way to fix the two new problems they found.
    • DJ-RN
      DJ-RN JoyAsh

      Posted

      Thanks for you post. You stated you had a Heller Myotomy. Did you also have a Fundoplication? Often people don't and later down the road they will become symptomatic again because of complications and developing GERD. They are telling me that I need both. But reluctant at this time because I want to try nitrates, calcium channel blockers or a dilatation to the LES first. It's very frightening not knowing what to do. I've had 5 regular esophageal dilatations but my LES was misdiagnosed for 15 years when I had Alchalasia and not GERD. I'm considering bringing a suit against the Dr. who did all the dilatations unescesarily. Have you had a Fundoplication yet? If not, that might be what they need to do. However, a friend of a friend has had 5 Myotomy and fundoplications thusfar. So it's not unheard of that you are having similar problems. If I were you I'd make certain you get two or three different opinions before deciding to do anything. Choking while at sleep is one of the most frightening things that's happened to me.

      DWJ

    • JoyAsh
      JoyAsh DJ-RN

      Posted

      Yes I had the HM with dor fundiplication in 2012. It helped some but unfortunately not as much as I'd hoped. Especially since the barium test showed the small hole and what looks like megaesophagus. Thank you for replying and best of luck!!

  • Finally17
    Finally17 DJ-RN

    Posted

    In 2012 at age 25 i had trouble swallowing about once a week. Went to doctor. They told me i might have esophagus cancer. Was terrified. (Thanks doc!) Had an endoscopy. Showed gastritis but nothing else. Doctors tested for celiacs. No cigar. Diagnosed with GERF. Was put on PPIs. Swallowing continued to get worse. Stopped going to doctor cuz it seemed like they were guessing. And well...insurance. was. Terrible. (I'm in America) Swallowing continued to get worse. I would often wake up at night choking and threw up all over myself more than once. I tried to fix my "diet" since this was the "problem". Swallowing kept getting worse. Before i knew it i was throwing up after everything i ate or drank. Including water. I would wake up and first thing i did was throw up the saliva that was just sitting in my throat all night. I hid it pretty well from most everyone. (Lots of trips to the bathroom during meal time. I'm sure people thought i was bulimic). 2 years of that. Then i finally decided that i have to go to the doctor again. Made my appointment. Husband got new job. Cancelled my appointment and made an appointment with doctor who took our insurance. Doctor was perplexed by my symptoms. Suggested i get a barium swallow test. I did. Radiologist said "yep...its achalasia". 3 months later I met with 2 surgeons in one day. Had the POEM because it made more sense to me. Insurance wouldn't cover POEM. Doctor told me the hospital would cover it. Had the surgery at age 29. And now i am happy. Love the surgery. Although I did just have it a few months ago. Hoping for the best.

    • DJ-RN
      DJ-RN Finally17

      Posted

      That's great to hear. I'm so happy that you got to the root of your problem. Sounds like you were determined to make sure you were doing all that you could on your end. I'm in USA as well and know all about our health coverage problems. So, you didn't have a Fundoplication? Just a POEM? That's what I'm hoping I can have without the Fundoplication. It's very scary to have episodes as if you're going to choke to death. People can't begin to fathom the fear. I hope that everything goes well for you. Let me know if you had just the POEM and not a Fundo. Also, tell all of us what food and fluids seemed to go down before you had the POEM. I think it might help many people such as myself to know more about what worked best for you. Thank you for telling us your story and good-luck!

      DWJ

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