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LOOKING FOR A ACHALASIA as Achalasia leaves me feeling alone and clueless!

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dolphinz930
dolphinz930

Hello to anyone who reads this. My name is Beth and I live in Ft. Lauderdale, Florida and I am 46 years young.  I am not exactly sure when Achalasia started but it has been at least  4 years now.  At first  it seemed to come and go and it really didn't bother me too much so I just let it go. My Achalasia seems a little different than others as I have the hardest problem with liquids. I feel so alone and I cant share what is going on with friends and family as it sounds so gross while trying to explain what I am feeling or what is happening.  My mother first thought that I was forcing myself to throw up and didn't believe me.  My son who is 25 I can always talk to but he worries about me and I wouldn't bog him down with my health issues i'm sure you can understand.... I am confused on which is the right procedure to do.... Is the Heller better than the POEM . or  POEM better than the Heller.???? I have found and read so much information online and have tried to be as best informed as possible, that being said it feels like I am going in circles.  One article says Heller is the Gold  and Poem is the Silver. while the next article says the exact opposite. I know Poem is new which leaves me with the question of  How long does it last?  the only answer i have gotten is it is so new they really don't know and  can not  really say as of right now i so their answer is up in the air.  I have read many horror stories and then just as many  success stories on both procedures . If  anyone has any advise to help me during this process please PLEASE respond.my life has changed so much and I am so depressed all of the time. 

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1 like, 9 replies

9 Replies

  • loretta15882
    loretta15882 dolphinz930

    Posted

    Dolphinz930

    I know exactly what you are going thru! Please please get to a surgeon as soon as possible! Talk to him about your best option! I waited too long and messed up my esophagus! It is dilated and truncated now! I did have the heller myotomy with fundoplication operation and am doing so much better now! I do have to make sure I chew my food extremely will and drink lots of water while I eat! I can eat anything I want! Good luck!

  • AlanJM
    AlanJM dolphinz930

    Posted

    I do not think you can say that one procedure is better than another until a specialist has run tests to diagnose what is best for you.
    • dolphinz930
      dolphinz930 AlanJM

      Posted

      Hi Alan, 

      Another person on this site told me that you had a link or a download I should get from you. the doctors here in So. Florida really don't know too much about Alchalasia.  My primary care Dr. started to explain somethings and I had to correct her as she was completely off.  I am lucky she didn't take offense and listened to me.  I keep hearing everyone say that they can push the food down with a great amount of water or liquids.  I find liquids do nothing but bring every up violently if I try to force.  food seems happy to just sit there until I drink or if I fall asleep I wake up choking.  If you could at you earliest convenience please send me the link or web address to where I can download the information so that I can not only print up for myself but for my doctor as well.  My doctor is very nice and felt terrible that I had this condition but was excited as of how rare it is and asked to be apart of all my procedures.  

      Thank you in advance for your time in sending me the information. 

      my email is

      Thanks Again

      Beth

      Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

      http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

    • AlanJM
      AlanJM dolphinz930

      Posted

      Yes, it is called 'A Patient's Guide to Achalasia' and you can download it from the website of the Oesophageal Patients Association - go to The Oesophagus and then Achalasia and the link is towards the bottom of the page.

  • Maz_Maz
    Maz_Maz dolphinz930

    Posted

    Hi I had a hellor myotomy in 1981 aged 29. It made life 90% better. I started having problems again about 5yrs ago, but i coped by just running to the bathroom as needed and i could only eat very small portions. I finally went to see dr when i suffered badly with heartburn. He referred me to a surgeon who gave me an endiscopy to find my achalasia was back. He could not re operate because of my mega esophagus so he gave me a balloon dilation. I have been so much better although i do get a little reflux especially after overeating especially cream. I feel sure this option was the best way for me. Hope this helps and wish you luck .maz maz
  • june97861
    june97861 dolphinz930

    Posted

    Good Evening, I was diagnosed in 2014 was in my late 50's with achalasia and had the same symptoms and understand exactly what your describing. I did have the Heller Myotomy w partial fundiplication and was the best decision I made. It was amazing when I could swallow water and actually feel it go down. I live in Pompano so if you need to talk anytime , let me know!

    • dolphinz930
      dolphinz930 june97861

      Posted

      Hello June97861, 

      Just wanted to drop you a quick hello.  I look forward to my surgery on the 19th but MAN oh MAN do you have to jump through a lot of hoops.  but I guess it is better to be safe than sorry.  After my first surgery was cancelled I now worry that the one on the 19th will be cancelled also.. Well I would love to take more with you as you are so close to home and know exactly how it is to not eat or drink.  

      How has your progress since surgery?   I would love to ask questions about the surgery as I am fearful that some say there is a lot of pain after and some say it is nothing.  I am not a candy ass that cries at a hang nail but that being said.  the pain I get in my chest from this stops me dead in my tracks and I feel like I cant breathe.  Any advice you can give I would be grateful.  

      Lots of appreciation for any advice you can give.

      Beth 

      Ft. Lauderdale

    • AlanJM
      AlanJM dolphinz930

      Posted

      I think your apprehension is perfectly normal.   The great majority of people do report great improvement after surgery, and there is a chance, but no guarantee, that the improved flow of food through your system will also reduce the spasms.   When you them start to eat and drink more normally there should be a greatly improved level of nutrition and sense of well being.   Very few people have regrets about the surgery.
    • june97861
      june97861 dolphinz930

      Posted

      Good Evening, I hope your surgery goes as scheduled. Try not to worry (I know its easy to say). Yes I went thru numerous tests but glad I did. I stayed overnight after surgery but my pain level was minimal. When i got home I started off with fluids & broth the first week and very slow introducing myself to soft foods. I started juicing and pureed veggies which helped getting nutrition back in my body. So after a few weeks I was doing great. Have not had a problem maybe little tweaks recently but probably it was eating the pasta which I seldom have. Wont do that again. I remember that pain in my chest, its awful. Its going on 3 years and so happy I had the procedure done. What hospital are you having the surgery? Keep in touch!

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