End-Stage Achalasia. Anyone been there?
Not sure this is the right group for this, but starting next week I'll start the process of finding out if I've reached End-Stage Achalasia.
If I have it is likely a consequence of receiving the diagnosis a few months before the stay at home orders from Covid. I was originally a patient at Massachusetts General, but had to move back to the West Coast, because of the shutdowns. There were significant delays in treatment, I didn't make the best choice of the doctor's for the the initial surgery; I didn't now anything about this and didn't want to travel. Achalasia is fairly uncommon. I had both a P.O.E.M, and a Heller performed. Both only gave temporarily relief.
The vaccines may have been a factor in worsening my condition. The most common theory for what causes achalasia is it is a autoimmune response to a virus. If this is true it makes sense that something like the covid vaccine could worsen an existing case. I took the first about two months after the second surgery, and had three doses of Pfizer before I realized it could be a factor.
This also tells us little about vaccines overall, because this is a rather large outlier.
Since the last surgery which was about eighteen months ago, I've had two swallowing studies and the evidence is there that it's worsening again. Not only I am losing the ability swallow it's become increasingly painful to the point it's very hard to put up with.
Over the past year I've attempted to find out if anything is complicating my condition that would explain the worsening swallowing, pain and other symptoms. We've come up empty so far.
I have an appointment on Monday at Oregon Health Sciences with one of their gastroenterology professors to begin the process of determining whether or not I've reached End-Stage.
I suspect I have, for the reasons I've mentioned and I've developed a secondary condition on the top of my esophagus which is seen in late stage cases.
If it's determined I'm legitimately in End-Stage the only option I have is an Esophagectomy. That's a huge deal. If anyone has had to go through this surgery for any reason (this is most commonly done for cancer) I would very much like to hear what the experience was like and how best to prepare myself for this possibility.