New to Achalasia.

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Hello everyone. I'm new to the forum and would like to introduce myself.

My name is Heather. I'm 36 years old, live in Oregon (USA) and was diagnosed with Achalasia this month 8/17. I've dealt with swallowing liquid and solid issues for about 6 months now. After seeing many Dr's and specialists, going through a large assortment of tests, being admitted to the hospital, I was finally diagnosed with Achalasia.

I met with my surgeon last week and after hearing my treatment options, I've chosen the POEM procedure. I'm/we are waiting to hear back from my insurance to see if they will approve my procedure.

This has been quite a year for me health wise. I've dealt with the Achalasia issues, kidney stones, being admitted to the hospital and I also have/deal with Multiple Sclerosis as well. My auto immune system SUCKS.

I'd love to hear from others on their trials and tribulations with Achalasia and to hear what treatment procedures you've gone through. Has the treatment/procedure helped you?

Thank you, Heather

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4 Replies

  • Posted

    Dear Heather, as I have read about the achalasia symptoms and natural treatment. I think you can try to take 2 tablespoon of extra virgin coconut oil daily up to 4 weeks. This would reduce the symptoms of achalasia. 

     

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  • Posted

    Hi Heather!!!  

    You must be a tough lady to handle all of that. I'm so sorry. 

    I am 35 and was diagnosed in February of this year.  I started with a pneumatic dilation and have been taking the blood pressure meds to help with symptoms. For the most part they have worked, considering I went from not keeping any solids and hardly any liquids down. 

    Please don't let this story scare you as I'm trying to make sure NO ONE experiences this. I was scheduled for POEM back in June. During intubation i aspirated and ended up on a breathing machine and in icu for four days.  I am making a second attempt at the surgery on the 21st of this month. This time having a more serious conversation with the anesthesiologist about proper methods of putting me to sleep with such a unique condition. Turns out I should have never been laying flat on my back. This time around I will remain awake for intubation to avoid the same thing from happening. 

    We must remember this disease is super rare and some physicians and anesthesiologists will need some coaching from us. And that's ok. With rare conditions it's soooo important to be our own advocates. I am also blessed that my husband and mother in law have done hours of research on the condition as well. 

    Welcome to our club Heather. I hope you get treatment soon and can remain positive. 

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  • Posted

    Welcome, Heather.  I am 9 months post-op, Heller Myotomy & Fundoplication surgery, and 6 months post-balloon dilation.  For the 2 months leading up to surgery, all my system could handle were liquids.  The surgery did give me some improvement.  I have type 1, Achalasia, which means my esophagus is paralyzed.  Nothing can be done for that.  The specialist figures I had A for decades, but the diagnosis did not come until a year ago June.  So, I was in the end-stage, when diagnosed.  I've found that being a part of this Forum, has given me support and information and advice.  Alan, who is with OPA, [Osophageal Patients Assoc; UK] can direct you to a super-helpful Patient's Guide to Achalasia, as you will find 'no' books on this rare disorder.  Alan, also gives very good advice and wisdom.  Each person travels their own journey with this disorder, and you will, by trial and error, find what works for you and what doesn't.  People who do NOT have Achalasia, are not really the best advice-givers; unless you have A, you do not know what it is like, etc. 

     

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  • Posted

    Hi Heather,

    This is not a group that one can be proud of to be part of but we will try to help you with suggestions in every possible way. 

    I got diagnosed with this on June of this year. There were early signs in 2014 but dysphagia was very rare to confirm achalasia. Dysphagia and regurgitation became frequent from Januuary this year. I was able to see the doctor in May and then tests were performed in June. I decided not to go for dilation because it was a temporary solution. I opted for Heller scheduled on july 11. With Heller, they do fundoplacation which reduce your GERD symptoms post surgery. then I had to postpone it because I got a 60 day notice at work on July 7th. Then I thought to go for POEM as it has quicker recovery period. There was a risk of denial for insurance,I was hopeful that we can get decision in month, and if it gets denied, I will go for Heller. 

    Then my hospital did something funky. I already had an approval for Heller. the doctor office said they started the process  on July 10 sending documents to pre-cert department to get the approval for POEM.  I didn't hear anything from hosipital in the subsequent days. I followed up with the insurance on July 21st and came to know that surgery date has been updated for Aug 11 but the procedure code was same as for Heller. I became nervous and called doctor office but they said my POEM has been approved. I mentioned what my insurance said but they said not to worry about - both procedures are myotomy so insurance might have got confused because the name still will have myotomy. Doctor office gave me an  authorization number. I re-verified that number with the insurance. The date was changed to aug 11 but the code was for Heller. No new code had been added. Weird thing is my surgeon said in an email that he had been advised that the POEM was approved for me. I again called doctor's office and at that point she basically flipped out and was very annoyed and angry. I persisted with my doubt and had the pre-cert  of my insurance talk with pre-cert of the hospital. They finally had the new code for POEM added to my case on July 28th.  On July 31st, the pre-cert department of my hospital and doctor's office was notified that the new procedure code was denied. So it seems like the hospital was going to do POEM for me under the same approval that I had for Heller but wasn't going to tell insurance. I am not sure how they were going to manage the billing as POEM is much expensive than Heller(as per my surgeon). My main concern was since code for POEM was not approved, later when hospital bills the insurance , insurance would deny the payment then i would have to fight with insurance and hospital . That's why i constantly kept nagging. Whatever risk there was with POEM happened for me. It gets denied initially then the doctor will send a letter, upper management will get involved and all that. But I never understood why the doctor's office trying to make me give false impression that POEM has been approved? It seems like it was a workaround that they had.

    So be ready for delays with POEM. I couldn't wait longer as my employment is going to end soon and I am going to take a short term disability leave as I do Heller, otherwise I risk being ina condition where I will be recovering and I would have no job. With POEM, I have heard chances of GERD are higher as they can't do fundoplacation. Ask every question that comes to your mind to the surgeon. 

    If you have any questions, feel free to call me or text me. 302-213-0799. I also want to talk with people on phone because it becomes very easy to communicate over phone as there are lots and lots of questions.

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