End-Stage Achalasia. Anyone been there?

Posted by pshack76 @pshack76, Dec 1, 2022

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.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Teresa, Volunteer Mentor | @hopeful33250 | Dec 15, 2022

In reply to @pshack76 "Teresa, I met with the gastroenterologist, last week and the first step is to schedule and..." + (show)

Hello @pshack76

I will certainly be thinking about you as you go through this process.

I hope you can share how you are doing. Will you post again when you have a date for the upper endoscopy?

pshack76 | @pshack76 | Feb 1, 2023

This is basically an update. I am officially an end stage achalasia patient. The diagnosis was made by two of Oregon Health Science's Gasterentologists. The diagnoses was fairly clear after the endoscopy, but they did more to make sure. The symptoms have clearly come back and are as bad as ever after both a poem and a Heller surgery over the past two years. The endoscopy showed evidence not only symptom recurrence but also damage to the esophagus that can't be reversed. A lot of dilation, something describe as legions all over and more.

At this point even liquids can be difficult to swallow at times and my options aren't good. I probably to this point because the original diagnosis was late and it happen three months before the stay at home orders from Covid. There may have been some other factors as well, but that's all in the past. Right now I've been referred to one of the surgeons for an esophagectomy.

OHSU is more experienced at this than I understood. I've been told they do more than anyone on the West Coast. And I am an Oregon resident. So far I've only committed to an office visit. But if they are as experienced and as good as I've been told they seem like a good choice.

I've believed this was coming but now that it's a reality, I'll admit it's overwhelming. I know that achalasia is rare and few patients get to this point but if anyone has had to go through this and can share a little of their experience I'd love to hear it. Or anything else.

pshack76 | @pshack76 | Feb 1, 2023

In reply to @hopeful33250 "Hello @pshack76 I will certainly be thinking about you as you go through this process. I..." + (show)

Teresa, Sorry I haven't posted in awhile. I had the upper endoscopy. It was pretty clear. My doctor still conferred with a colleague of hers at OHSU, who is also treats a lot of achalasia, but I'm clearly end stage and have only one realistic option. They've refereed me to one of their surgeons for an office visit. I'm not committed to an esophagectomy yet, but I realize I have no other realistic option.
The good news that the prognosis for this surgery for non-cancer patients is actually not bad. OHSU is more experienced at than I understood. They do more than anyone on the West Coast. Since I am an Oregon resident they are surely worth talking to. And I am young enough, 46, that I stand a good chance at withstanding this well and making it to the other side okay.
Even though I expected this it is overwhelming.

Philip

Teresa, Volunteer Mentor | @hopeful33250 | Feb 2, 2023

In reply to @pshack76 "Teresa, Sorry I haven't posted in awhile. I had the upper endoscopy. It was pretty clear...." + (show)

So good to hear from you again, @pshack76. It is good to know what your option is and to know that you would be seen at one of the best medical facilities in the area. Finding a hospital system with experience is so very important. You've certainly done your due diligence in this matter.

I'm looking forward to you continuing to post and keep me updated on your decisions. It certainly would be a major surgery, but it sounds as if your age and general health put you in good standing for a successful outcome.

Will you continue to post with updates and /or questions?

postdoc656 | @postdoc656 | Feb 8, 2023

In reply to @pshack76 "This is basically an update. I am officially an end stage achalasia patient. The diagnosis was..." + (show)

pshack, I know nothing about Oregon's docs, but I had excellent results at the University of Washington's Hospital in Seattle. If you're able to get up there and want a second opinion, I suggest a visit. Good luck!

pshack76 | @pshack76 | Feb 8, 2023

In reply to @postdoc656 "pshack, I know nothing about Oregon's docs, but I had excellent results at the University of..." + (show)

That's worth looking in to. Among other things, the scheduling could be a nightmare. It hasn't been easy so far. Thanks!

Teresa, Volunteer Mentor | @hopeful33250 | Feb 9, 2023

In reply to @pshack76 "That's worth looking in to. Among other things, the scheduling could be a nightmare. It hasn't..." + (show)

Hello again @pshack76,

I'm so glad that you continue to post updates. I really admire your proactive stance in dealing with this problem. You have been working diligently in order to get the best opinions and to understand your options.

Will you continue to post updates as you make your decision regarding surgery?

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