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.

@pshack76 I don’t have Achalasia, but I do have a slight (compared to yours) problem swallowing and I find putting my head down chin toward chest (as in looking down at the floor) while swallowing helps the food and drink go down easier. I learned this trick from a friend who had cancer and could not swallow. Her nurse had suggested this trick to her when she couldn’t swallow her medications.

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@pshack76, I'd like to add my welcome. I added your question to the Digestive Health group as well (https://connect.mayoclinic.org/group/digestive-gastrointestinal-problems/) where you find additional discussions about achalasia like these:

– Achalasia: https://connect.mayoclinic.org/discussion/achalasia/
– Esophagus issues: https://connect.mayoclinic.org/discussion/esophagus-issues/
– POEM Surgery for Achalasia: https://connect.mayoclinic.org/discussion/two-months-after-poem-surgery-for-achalasia/
– Achalasia Chronic pain: https://connect.mayoclinic.org/discussion/achalesia-chronic-pain/

I'm tagging fellow members like @d13 @fourof5zs @ryman @hopeful33250 @candidough47 @dbgood @kaptainkat @lindahayes and @dandl48 who can share their experiences of achalasia with you.

Should an esophagectomy be the next step, I can connect you with members who have been there to help you know what to expect.

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Hello @pshack76,

I am glad that Colleen, @colleenyoung, invited me to this discussion. While I've never been diagnosed with Achalasia, I have had difficulty swallowing due to a paralyzed vocal cord as well as neurological difficulties. Therefore, I can certainly understand the physical as well as emotional struggle that comes with swallowing difficulties. While I'm sure you have done a lot of personal research on this disorder, I found some information on Mayo Clinic's website which might be helpful to you. Here is the link:
–Achalasia
https://www.mayoclinic.org/diseases-conditions/achalasia/symptoms-causes/syc-20352850
If you've been dealing with swallowing problems for a while, I'm sure you have found ways to deal with this, but I'll share one of the strategies that I've used. When drinking liquids, I'll often hold my breath when swallowing. While this seems to be a rather unusual strategy, I've mentioned it to otolaryngologists and speech therapists who have all agreed that this is a sound way to deal with the problem of swallowing liquids.

If you have not had speech therapy, I highly recommend that you seek a referral to a good speech therapist. Speech therapists are great resources in dealing with swallowing issues, however, not all doctors think to offer this referral.

Have you seen a speech therapist for evaluation or treatment, @pshack76?

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Hi, I am sorry but I have not had this procedure so I have no experience to share but I will listen to you. I am just writing to be supportive. I won't give you tips to swallow because you have heard them all and tried them. I have a different nasty disease and I am losing my ability to swallow but I am not at end stage or close (yet). I just had my first esophageal dilation so I am a newbie. Please write again, I'll read what you wrote & try to be as supportive as I can. Take care, irishponies

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Hi. This is likely a long weekend for you awaiting a medical determination. I can relate to you in that experience. I've been there more than once. This Mayo Clinic web connection is amazing especially for those times. I see that you have received medical links, personal testimonies and individual support. I hope this all gives you more confidence in encountering the future, whatever it may hold, and some peace of mind. Of course, I pray the best for you.
I haven't suffered from your medical condition. But thru mine, I know I am always emotionally impacted by the terminology that carries an additional heavy burden. "End Stage" for example. It would be easier for me to hear "advancing" or "progressed" then that description. I don't know about you in this way. But in my medical life, my outlook and my spirit play a huge role in how I experience my decisions, treatment + even outcomes. So if you're like me, reframing your status into equally as true terms which are less difficult and weighty is helpful in handling each day, each step.
I wish for you that, whatever you have to go thru medically, you have a full tank of inner strength and a gunny sack full of hope. You can do it. Whatever it is.
Treat yourself well this weekend.
🙏 for you.

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@hopeful33250

Hello @pshack76,

I am glad that Colleen, @colleenyoung, invited me to this discussion. While I've never been diagnosed with Achalasia, I have had difficulty swallowing due to a paralyzed vocal cord as well as neurological difficulties. Therefore, I can certainly understand the physical as well as emotional struggle that comes with swallowing difficulties. While I'm sure you have done a lot of personal research on this disorder, I found some information on Mayo Clinic's website which might be helpful to you. Here is the link:
–Achalasia
https://www.mayoclinic.org/diseases-conditions/achalasia/symptoms-causes/syc-20352850
If you've been dealing with swallowing problems for a while, I'm sure you have found ways to deal with this, but I'll share one of the strategies that I've used. When drinking liquids, I'll often hold my breath when swallowing. While this seems to be a rather unusual strategy, I've mentioned it to otolaryngologists and speech therapists who have all agreed that this is a sound way to deal with the problem of swallowing liquids.

If you have not had speech therapy, I highly recommend that you seek a referral to a good speech therapist. Speech therapists are great resources in dealing with swallowing issues, however, not all doctors think to offer this referral.

Have you seen a speech therapist for evaluation or treatment, @pshack76?

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Thanks for the reply. From what I've been told this is part of the process at OHSU when they evaluate achalasia patients. I believe they are trying to find out if anything more than achalasia is effecting your swallowing. There's work in the swallowing and voice clinic which is part of the hospital.
I've talked to them in the past and I don't know whether or not they can actually help the swallowing problems that are caused by achalasia. The area of the esophagus is the bottom. The one I talked to could have also not known much about the disease. It is rare. So I guess I'll have to wait and see.
Philip

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@pshack76

Thanks for the reply. From what I've been told this is part of the process at OHSU when they evaluate achalasia patients. I believe they are trying to find out if anything more than achalasia is effecting your swallowing. There's work in the swallowing and voice clinic which is part of the hospital.
I've talked to them in the past and I don't know whether or not they can actually help the swallowing problems that are caused by achalasia. The area of the esophagus is the bottom. The one I talked to could have also not known much about the disease. It is rare. So I guess I'll have to wait and see.
Philip

Jump to this post

Hello @pshack76

I look forward to hearing from you as you go through the process of evaluation and treatment at OHSU.

Do you know yet what the next step is in your evaluation?

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@hopeful33250

Hello @pshack76

I look forward to hearing from you as you go through the process of evaluation and treatment at OHSU.

Do you know yet what the next step is in your evaluation?

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Teresa,

I''m not exactly sure. I know most of the basics, they'll do an endoscopy, as well as a barium swallow exam, they may do what's called an esophageal manometry (I've had that one three times now; it's not fun). Outside of that they take an individualized approach based on each patient. And a lot depends on when they can schedule. Like many places they are still overrun because of Covid.
I'll know more after I meet with the gastroenterologist, who is in charge of ordering everything. That happens this afternoon.

Philip

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@hopeful33250

Hello @pshack76

I look forward to hearing from you as you go through the process of evaluation and treatment at OHSU.

Do you know yet what the next step is in your evaluation?

Jump to this post

Teresa,

I met with the gastroenterologist, last week and the first step is to schedule and upper endoscopy exam, she took a quite a few records from me and said I should hold on to the rest I'd brought they may be needed. I was told it may be necessary to repeat the esophageal manometry, to try and find why it was inclusive in the past.
As far as the possibility of an esophagectomy, she said it's not inevitable at this point, but I'm clearly running out of exclamations that will allow me to avoid it. I find that difficult because what I have to is plan for that being a very real possibility and hope it doesn't happen at the same time. It' s a rather weird state of mind.
We'll know a whole lot more after the endoscopy. Schedule is tuff there. Like most hospitals, they have too many patients right now.

Philip

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@pshack76

Teresa,

I met with the gastroenterologist, last week and the first step is to schedule and upper endoscopy exam, she took a quite a few records from me and said I should hold on to the rest I'd brought they may be needed. I was told it may be necessary to repeat the esophageal manometry, to try and find why it was inclusive in the past.
As far as the possibility of an esophagectomy, she said it's not inevitable at this point, but I'm clearly running out of exclamations that will allow me to avoid it. I find that difficult because what I have to is plan for that being a very real possibility and hope it doesn't happen at the same time. It' s a rather weird state of mind.
We'll know a whole lot more after the endoscopy. Schedule is tuff there. Like most hospitals, they have too many patients right now.

Philip

Jump to this post

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?

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