Barrett's esophagus and achalasia?

Posted by pshack76 @pshack76, Jun 3, 2023

I know this is a long shot getting much information here, because this is a unusual association of illnesses.
I've posted about achalasia here before, I'm just now understanding how difficult my case has been for everyone I've seen because I also have Barrett's esophagus. In fact what led to the achalasia diagnosis was discovery which was made during an endoscopy where the doctor intended to evaluate the status of the Barrett's. That seems to be a rare occurrence that was lost on me before.
Somehow in my prior attempts to getting the achalasia under control, the fact I had Barrett's got lost in the process. Maybe it was because this was at the height of Covid? I'm not really sure.
Where I'm at now is I've had two failed surgeries for achalasia. OHSU in Portland Oregon has evaluated my situation and recommended a complete esophagectomy at this point.
It does not look like their surgeons are going to be able to do it due to a combination of never having seen a case quite like this and facing a very high demand.
It didn't take me long to discover in researching this online that this is an unusual and rare situation and it might be difficult to find a surgeon who feels they can treat this.
Does the combination of illness make surgical intervention more dangerous? I know that Barrett's will weaken your esophagus and achalasia can stretch and put pressure on it in manner that seems contrary and could be dangerous? I don't really know. I just understand this is much more complicated than I understood prior.
At the moment I can hardly swallow anything outside of liquids and its become extremely painful.
The good news is I have insurance that will let me go just about anywhere and the Cleveland Clinic is currently reviewing my case. I believe I'll hear back from them in about two weeks. I started with them because they have a lot of experience in many areas and give a fast turn around on these kind of inquires. I also understand the Cleveland Clinic has a thoracic surgeon and is an expert on rare diseases including achalasia.
I may have to be prepare to look else where depending on what they say. In general how do you approach a situation like this once you understand you are in fact in rare and unusual territory, but also that you symptoms are demanding you find some sort of solution?

Interested in more discussions like this? Go to the Digestive Health Support Group.

I also have Achalasia but in Orlando had a doctor recommend Poem procedure. Before the procedure I could hardly keep water down. I now can eat but according to doctor due to Achalasia which is not curable I will ever eat like a normal person.I had a local cold press juice place that I used all the time and a local natural health store that suggested a powder combo of vitamins to put in juices. I pray you find a great doctor!!

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I read a article that talked about achalasia and the connection with the vegus nerve...has anyone heard of this? Plus, could a tetanus booster shot flare up achalasia?

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@debra54

I read a article that talked about achalasia and the connection with the vegus nerve...has anyone heard of this? Plus, could a tetanus booster shot flare up achalasia?

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Doctors have mentioned the vagus nerve to me a couple of times, but they've always been vague, so I'm not sure what they meant.

As far vaccines flaring up achalasia; I'd say possibly. There is a strong theory, with some evidence to support it that achalasia is autoimmune in origin. The theory is that achalasia is an autoimmune response to a virus or bacterial infection. But achalasia develops so slowly and it's not a common illness, by the time it's diagnosed evidence of this is not present. This is not considered conclusive at this point.
(UCLA has some good information about this theory on their website and it's easy to understand. Other sources talk about this as well.) If this is true, vaccines could in theory could flare up achalasia.

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I have achalasia Type II and recently underwent a successful robotic Heller manometry with Watson fundoplication, EDG/Endoflip with Dr. John Lipham at USC Keck Medical in Los Angeles. He is an excellent doctor. Support staff for nutrition and follow up very good. Post operation I can eat normally without GERD. Regular follow up endoscopies will be required. Highly recommend USC Keck Medical Los Angeles.

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I have had barrett's for at least 6-8 years. I was started on Pantoprazole but it only made me burp more, which is painful for me now. She wants to start me on 'sucrafate' I think that is how to spell it LOL. I have to pick up the pills a this afternoon. She got me pills instead of the liquid. It has become more painful for me to swallow etc. I am worried about the future. i go to Borland but am thinking of secod opnion time. Any thoughts would be appreciated. I hate how it has really limited what I can and can not eat etc..Do really. Peace

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