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Achalasia

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Posted 3/27/2019 12:55 AM (GMT 0)
Does anyone else in this group have lower dysphagia or Achaisia. I've been trying to live with this for over a year.
Posted 3/27/2019 2:04 PM (GMT 0)
msplayful:

I have no experience with achaisia, what suggestions did you doctor have for you when diagnosed? Are you currently on any medications or has he suggested a dilation of the esophagus?

Sharon
Posted 3/27/2019 2:33 PM (GMT 0)
There is an excellent Facebook group for Achalasia that is quite active and full of a wide range of people who have been dealing with it for decades to recently diagnosed. You'll need a Facebook account to join it. Just go to groups and type in Achalasia.
Posted 3/27/2019 9:31 PM (GMT 0)
Thank you, J Baxter. I have found the group and trying to join it. It looks confusing and not sure how to join, but I do see some good information in their comments. Thanks.
Posted 3/27/2019 9:32 PM (GMT 0)
Sharon, he's talking surgery. I'm looking for options.
Posted 3/28/2019 11:49 AM (GMT 0)
msplayful:

Did he suggest a particular surgery? I guess it all depends on how severe your swallowing dysfunction is. Did he suggest having an manometry to check swallowing function, or have you already had this test done? Before you commit to any surgery, seek a 2nd option to make sure you know all of your options.

Sharon
Posted 4/7/2019 12:25 AM (GMT 0)
Hi, I do have Achalasia. I was diagnosed in 2011 after about 6 years of swallowing problems leading to lost weight and a completely impassible esophagus when they tried to do a scope. It was impacted with food. I did the dreaded manometry test- I hated it. But it confirmed that I have no motility in my esophagus. I first got Botox to widen the opening so that i could eat and try to get stronger before surgery. Then I had Heller Myotomy with partial fundoplication in 2011. I’ve done some balloon dilations since then to widen it, and I have to sleep inclined every night for the rest of my life. Acid reflux is horrible and I went off omeprazole to try to fight SIBO and get healthy naturally. I’m struggling though! I’m a special case though- there was a hole left in my esophagus after the surgery, so i had lots of leakage for a couple days before we figured out there was a problem and i needed a 2nd emergency surgery for a stent and drain tubes. That doesn’t usually happen! Hope all goes well for you- let me know if you have questions!
Posted 4/26/2019 2:35 AM (GMT 0)
I was diagnosed with achalasia last year after 6 years of progressively worsening swallowing. I could not swallow any solid foods, I had food coming up through my nose and I was miserable. I searched out experts in swallowing disorders at UTSW and I had all of the tests done (the manometry, barium swallows, ect) and was diagnosed with achalasia. no need for a second opinion. I decided that immediate surgery was needed to prevent the development of megaesophagus. POEM was an option, but I decided to go with the gold standard heller myotomy with dor fundoplication last May at UTSW in Dallas. The surgery was a success and I am swallowing normally with the occasional jam up (sticky cheese, chunkier food)..the surgery has changed my life back to normal.
I had the surgery very early in the progression of the disease so my prognosis is very good.
I no longer have food coming up through my nose in the middle of the night and I am totally off PPI medications. I no longer have to sleep on an incline. I still have esophageal spasms, but the number has been cut dramatically.

Achalasia is very rare and is hard to diagnose. If you have been diagnosed with Achalasia, the doctors will be pretty confident with the diagnosis and you are 50% there as you may now have surgical options. You will not find a whole lot of support groups around..it is something that can be addressed surgically and therefore, you don't have to live with it as long as it is not in the end stages and you are a candidate for surgery.

Stretching with a balloon usually doesn't last very long with achalasia. My first one lasted 6 months and the second time it lasted 4 weeks. My advice is to get the surgery as soon as you are able. It made a huge difference in the quality of my life and you don't want it to progress.
Posted 4/26/2019 2:41 AM (GMT 0)
To follow up: My surgeon is an expert at heller myotomy...research your surgeon and make sure you have the best in order to reduce risks of failed surgeries. UTSW Dallas Dr. Kemp Kernstein.
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