Heller Myotomy at 11 and a half years

I've been having dry cough, exhaustion and intermittent fever and chills, increased difficulty eating for over a month with several negative Covid tests. Three moths ago I had a FL esophagram double contrast and the results stated "Severe esophageal dilation". Asking my PCP today if she thought my symptoms were related to Achalasia she casually replied: "Oh no! I asked your specialist, who said, sadly, because you have severely burned out achalasia, there is nothing that can be done. Even taking your esophagus out would most likely be very terrible for you. I am so sorry to deliver the bad news." "Severely burned out achalasia"? Out of nowhere mentioning removing my esophagus?! WTF? I consider this the most irresponsible, least professional message I've ever received from a doctor. Not going back to that PCP. Seeking an Achalaia specialist.

Heller Myotomy at year 6

Six years already? I thought I'd write something at five years but I guess I got distracted. If this post is of interest to anyone I guess it would be someone considering a Heller myotomy. So here's my status six years out. Your mileage may vary... I'm glad I had it done. I remember pondering the choices of more botox, getting a balloon dilation or the Heller myotomy surgery. Hindsight being 20/20, I can say I would have avoided some grief by having it earlier. The surgery was not a great ordeal (not to minimize any surgery, but I was in and out over a weekend), recovery went smoothly and I was quickly eating stuff I had avoided for over a year. I occasionally still get blockage but it always clears in a few minutes and does not require an upper endoscopy to clear it like it did before surgery. And I can usually avoid blockage if I don't eat too quickly and I take care to chew stuff, especially chunks of meat, thoroughly. The last thing that got stuck was some turkey meatball that was pretty dry inside... not my best choice. Still, I drank some water, I coughed some of it up and some of it passed and I was fine in about 10 minutes. No fun, but it's the rare exception now. In the last six years I've eaten whatever I wanted to eat. Recently I'm doing the Whole 30 diet. I start every day with a glass of lemon water and a probiotic (VSL DS#3 when insurance will pay for it, otherwise something over the counter). I probably still have underlying inflammatory issues but for now, they don't bother me. If you're dealing with Achalasia, I hope the info in this blog helps. Good luck.

Heller Myotomy after one month

I had a followup x-ray and Dr. visit yesterday. The x-ray looked good and the incisions look good. I'm sleeping flat and I'm not experiencing reflux and the doc says I probably would have by now if that were going to be a problem. I'm eating whatever I want with no problems. I can even swallow soft bread with peanut butter. For the last couple years, attempting that would have meant a trip to the hospital. The only thing I can't do is chug a tall glass of cold water. The cold makes my throat clench down. No biggie, I've grown accustom to drinking warm or hot water (although requesting hot water at a restaurant still produces a surprising amount of confusion for some restaurant staff). I went for a run afterward, for the first time since before surgery. I only ran 1.5 miles but it's a start.

My Heller Myotomy experience:

Friday, February 11, Surgery day. I spent a while before surgery talking to 3 members of the hospital's ostomy group, talking about how to handle my k-pouch ileostomy during the anesthesia. They all remarked that even among the ostomy group they had not actually seen and worked with a k-pouch before. I described what had been done following the k-pouch surgery: leave the catheter in and put a bag over it. They agreed but it took a while to figure how to anchor the catheter so it wouldn't just slip out. We put a safety pin in, perpendicular to the catheter and put several sticky strips over the safety pin then slapped an ostomy bag on the whole thing and it was on to surgery...several hours later I awoke and was remarkably non-groggy, just tired. I kept falling back asleep and each time I woke up I felt lucid. General anesthesia sure has improved in the last 25 years. By midnight I was wide awake, sitting up, reading magazines (I fortunately had set aside unread a few MOJO and Rolling Stones for the occasion) and discovering the Free Zone program on WICR. Not a bad way to end the day.

Saturday: Clear liquid diet and pretty low energy. After doing well with liquids they removed the stomach drainage tube running up my nose and removed the urine catheter. With those gone, feeling a bit more mobile, we removed the ostomy catheter and bag and went back to standard k-pouch maintenance.

Sunday: Switched from Clear liquids to the "Mechanical Soft Diet" which, after weeks of blending my foods, seemed like a pretty full diet to me, including chicken marsala, meat loaf and potatoes. When my blood sugar dipped before lunch arrive the nurse gave me peanut butter and crackers. For the last two years, peanut butter would have led to my throat being blocked. This time it presented no problems. I'm feeling pretty good about the success of the surgery.

Monday: They remove the tube draining fluid from my chest and I'm free to go. Except for the pain in my side and back from the two incisions and one drainage site, I have no discomfort. It surprised me that I had no discomfort in my throat and chest. I spent the evening with friends, taking it easy and eating a chicken/veggie stir fry.

Tuesday: Walked a little under 2 miles. Got some creamy chicken etouffee carry out from Yats. Yum.

Wednesday: Walked 2 miles. Got some Greek gyros salad.

Thursday: Walked 4 miles. Shrimp Chimichanga, re-fried beans, etc... Been looking forward to this dish for a while. No problem with those re-fried beans this time.

Friday: Walked 6 miles. Enjoyed my favorite cheese burger at my favorite bar, The Red Key.

Saturday: Spent 4 hours at the Children's Museum followed by some Pizza Hut pizza. So basically I'm eating a bunch of stuff that would have gotten stuck and perhaps blocked my throat for hours or days if I had had it any time during the last two years. No problems at all. And I can chug a glass of water. I hadn't been able to do that in years since even water would get backed up in my throat. So I'm pretty thrilled with the success of the surgery. Hindsight being 20/20 I can say now I would have had it months earlier if I had known the results would be like this (and if I had known the botox shots would offer such limited relief). So the surgeon says this will offer maybe 15, 20 years or more relief. I look forward to that.

I think that last botox shot is wearing off now after only a month and a half. Food has been getting stuck in my throat more lately but so far it has passed within 15 or 20 minutes. Except when I had some re-fried beans recently. That took all night to finally clear. With surgery three weeks away I just need to be more careful eating. I've already been drinking more hot water with each meal. I should probably start blending stuff again just to be safe.

I've scheduled the Heller Myotomy for early February. I'm not thrilled but I think it's my best option at this point, given my fondness for solid food.
I talked to the surgeon. He says 80% of patients feel their situation is improved and that the benefit could last upwards of 15 or 20 years. The surgery itself should be no big deal, a few days in the hospital, some reduced activity for a while. I just hope the results offer some years of relief.

Finished with the upper endoscopy. I recovered pretty quickly. Propofol is my sedative of choice. No long groggy hours. They did a dilation and a botox shot and pulled some stuck food out of my esophagus. I figure 1) I need to be more careful about what I eat and 2) this buys me several weeks or couple months to figure out what's next. I'm going to go ahead and meet with the surgeon and discuss the Heller Myotomy or the large balloon dilation. I had a hot soy milk steamer on the way home then some oatmeal at home and I feel pretty good.