Achalasia; possible end-stage.

Posted by pshack76 @pshack76, Dec 4, 2022

About two months prior to the stay at home orders from Covid I was diagnosed with Achalasia. I lived on the East-coast at the time. I had one appointment at Mass General and then the shutdowns began. Due to my person circumstances I had to return to the West Coast.
After the delays I went to a clinic in Portland. It didn't go well. I had both the P.O.E.M. and a Heller. The P.O.E.M. failed fairly quickly The Heller seems to held off symptoms longer, but now they are clearly coming back.

What I could be influencing this (as well as possibilities);
1. The Esophageal manometry has always been inclusive in me. I believe this has to do with the length of my esophagus, I'm not sure. (I am over 6'3). This test is to determine what type you have. Achalasia can be diagnosed in other ways, but determining what type you have when this tests fails appears to be difficult. Unfortunately at the clinic in Portland I wasn't told about this before the first surgery. I only found out from another doctor at a different hospital who read it in my records. I didn't educate myself well enough to understand this may be a problem. (I still don't know it is; just a possibility).

2. The delays in treatment from Covid as well as taking the vaccines shortly after the Heller, could have had an influence in my returning symptoms. (Achalasia is thought to be an autoimmune reaction to a virus, so it's not impossible vaccines could worsen an existing case. It also isn't that important right now. But is a possible explanation. It doesn't change my current situation. Add to this the stress level of having to deal with this in the middle of a Pandemic there are lot of ways Covid could have effected this.)

Over the past several months I've attempted to find out if anything outside of achalasia has complicated things: I've been to a rheumatologist and a neurologist. They both ruled a lot out, but found nothing.

Other than the increased swallowing problems, I'm even occasionally having problems with liquids (my last swallowing study confirmed things were worsening. This was about five months ago.), there is also an intense pain level that I'm never free from. I've developed a condition on the top of my esophagus that suggests the beginning of what's called Megaesophagus. Symptoms have suggested malnourishment and lab tests have confirmed this.

I'm due at Oregon Health Sciences next week to see if I'm in fact in what's called End-Stage. If I am, an Esophagectomy appears to be my only option.

I know it's a long shot, but am missing anything?
If I in fact have to have an esophagectomy; how do you prepare for that? How important is the choice of who does the initial surgery? I've seen a little bit about the importance of what's called high volume hospitals in terms of major surgery. UCLA is a possibility for me

Okay that's enough, I have too many questions about this and only it's looking likely, not absolute yet.

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

Really sorry that you have to deal with this. I have a lot of trouble swallowing and even had feeding tubes for a while. UCLA seems like a good place for achalasia treatment. I was hoping to go there for a while but it didn’t work out after my insurance changed. I have not been diagnosed with achalasia but I thought UCLA might have the expertise to deal with my dysphagia.

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