Achalasia: What's your experience with a Heller myotomy?

Hi @nmr and welcome to Mayo Clinic Connect. 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 @judyinaz @amoll157 @fourof5zs @leeross123 @ryman @hopeful33250 @uvamomb2007 and @dandl48 in the hopes that they will return to share their experiences with Heller myotomy or other treatment options.

NMR, are you preparing to have a Heller myotomy? What's your experience with non-surgical treatments thus far?

I had pseudo achalaysia and had a Heller Myotomy performed in 2016. I can swallow with no difficulties whereas before, even water was difficult. I had a full Nissen fundoplication, but it had to be taken down. I now have a partial wrap that is somewhat effective in controling my reflux. I still have reflux, though.

What is "pseudo achalaysia"? I have achalaysia and have to be very careful in what I can eat. I had a wrap but it appeared to be ineffective. I am looking for others with the same condition to get ideas regarding diet, etc.

Speak with a nutritionist or registered dietician. Your diet will depend on your symptoms. I've had achalasia for two years. Can you believe a few grains
of rice felt strange after I swallowed? So, I have to eliminate rice.There are also an assortment of books to be read. However, your doctor should have
a professional that he or she uses. At minimum, he or she should have a food list. You don't want to choke or get food into your lungs. Also, you don't
want to lie down after you eat—ever. And actually, if you can find a digestive specialist rather than a GI doctor, you may find more hints on how to handle the disease. They say it's rare, but it's not. I know three people who live in my medium size town who have achalasia. Two are patients of my primary care physician. So how rare can it be?Good luck in search for good health.i

Good Morning
"Decisions to use endoscopic therapy (botulinum toxin or balloon dilation) or surgical myotomy are complex and benefit from the multidisciplinary approach of the Digestive Health Center."

The above quote comes from OHSU's website. It's the best advice I've seen regarding achalasia treatment. I would have benefitted had I followed it before my surgery. I've had both the Heller and the POEM. I had the POEM first (It failed, in a number of months, mostly likely because it was a misjudgment on the surgeons part. The POEM is performed using an endoscopic technique. They go in with a through your mouth. It is the least invasive and for people who are a good candidate this technique seems to work well. It appears that I was not. I am rather tall and have a long esophagus. It looks like that was simply the wrong technique to use for me. My Heller 'technically' was successful, but it has had some unintended consequences. I can swallow but not without severe pain. It even hurts to talk most of the time

And this is clearly where may case gets more complex and I would have benefitted from the approach implied in OHSU's quote. I can't entirely blame myself for this, I had never even heard of achalasia until I was diagnosed in Vermont. Their doctors referred me to Mass General (they are the most experienced in treated the disease in New England) and I had one appointment with them and Covid and the medical shutdowns set in. Shortly after I had to return to Oregon, but before having a bout of Covid myself (I don't know how that has effected the over all picture and it was well before the vaccines were available. I have since been vaccinated). I also have apparently have had the illness for close to a decade; suffering through many misdiagnosis like a lot of people with achalasia have

I know much of this recent medical background wasn't considered (along with the fact that achalasia was my fourth autoimmune disease and other important aspects of my health history) because the clinic in Portland never took a thorough health history.

Truthfully, I don't know how much of that would matter now. I had this done during the worst times of the pandemic and didn't know enough about the illness or what options were available. But it does seem obvious to me, since you're asking about surgery (and since this is a rare disease) to advise you to try and pick a surgeon who has experience with the procedure and the treatment of achalasia overall. That can be hard to find. It seems worthwhile because this can minimize the chances of suffering unintended consequences after surgery.

Philip

I should clear I'd be weary of surgeon who seems satisfied with just the minimum amount of testing (the barium swallow, the Esophageal manometry, and the testing to rule out cancer.) I'd be weary of somebody who wanted to rush into surgery on just the minimum