Update 1 month after Heller myotomy and partial (Toupet) wrap

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(For a much shorter summary with only the important details, please skip to the last paragraph)

History: Well, I'm about 2 days shy of celebrating my first full month post-op. I had the Heller myotomy with Toupet fundoplication to treat early stage Achalasia, and thought my experiences might help those of you considering the operation. A brief history first, though feel free to skip ahead to the next paragraph if you only want to hear about my recovery. I started having oesophageal spasms in 2008 after I returned from a trip to Asia. Classic sub-sternum chest pain at 4 or 5 am in the morning that brought me to my knees, lasting for 20-30 minutes on average. I found that limiting food at night reduced their occurrence. Later I discovered that a giant gulp of water with no air in my mouth could relieve the symptoms immediately. All doctors thought it was GERD and prescribed PPIs, and blamed me for not following a strict diet when I still reported issues. Diet modifications ultimately reduced the incidence of spasms though, and I convinced myself that I also had simple acid reflux. In 2014, I began to have dysphagia, starting with a Subway sandwich. It was terrifying, and I thought that I was going to choke to death. It happened with increasing frequency until late 2015 when every meal resulting in some amount of choking. Doctors still argued that it was acid reflux, and told me to get back on the PPIs. I moved to another state (in the US) with excellent doctors who thought itmay have been Schatzki's ring. I had stool samples, an exhausting amount of blood work, chest X-rays, then a, endoscopy. Next was a barium swallow that showed a blockage. Fortunately the doctor didn't perform a dilation, since Achalasia sufferers have a higher risk of oesophageal performation. Next was the manometry, which is the definitive test. The doctor personally read the results, and assured me his diagnosis of achalasia was 100% correct because he actually trained under the person who invented the technique. I was told that I was in Stage I, and that the prognosis should be good if I have surgery. If Stage II had developed, I would have noticed a relief of symptom as the oesophageal loosens from nerve cell death, and dysphagia resolves. This is a nasty part of the disease because people in Stage II often believe that their medications are working for their mistaken diagnosis of GERD. Meanwhile, you're slowly developing megaesophagus. 

Surgery/Diet: I opted for a manual Heller myotomy with partial (Toupet) fundoplication. While the success of surgery is 90% compared to 99% in POEM as I'm read in some papers, the risk of GERD is 10% with manual surgery vs 35% with POEM. I decided on a Toupet because this typically has less complications than a Nissen. No diet changes before surgery except for no food before midnight. The surgery went well, but I was extremely uncomfortable the two nights I stayed in the hospital. The bed hurt my back, I experienced spasms, I had to get cathetered two times, and I felt nausea. I made it home on the 3rd day and just drank bone broth and nutritional shakes. On day 4, I slowly ate macaroni and cheese without too much trouble, then salmon and yams on day 5. This caused me a lot of stomach pain mostly likely because of charred edges. I went back to baby food, porridge, shakes, and cream of wheat for days 6 and 7. On day 8, I had crippling pain in my sides. I thought I might have been kidney damage from the pain killers, so I stopped all medicine. I improved over the next couple days. I also had spasms, but they were different now. Instead of lasting 20 minutes, they lasted 5 hours. They were more "diffuse", and water didn't help but they were unmistakeably spasms. In week 2, I began to introduce solid food again. Soft catfish, poached eggs, even chicken nuggets with the fried exterior pulled off. I still experienced dysphagia and thought it would never go away. By day 16, I was eating regularly. I had Thai curry with massive chunks of beef, potato, and onion over rice (with spasms). Sake and wine gave me no issues and I ate everything except bread. My spasms have gotten better, and dysphagia is almost gone. I ate a double cheeseburger with bread two days ago, and had a buffet today, both of which would have given me terrible dysphagia in the past. While I got full very quickly during weeks 1-3, I'm now back to my usual portion sizes.

Summary: I had a Heller myotomy with Toupet fundoplication 7 years after noticing symptoms. I was pretty much back to a regular diet between weeks 2-3, and could even tolerate bread into week 3. Noncarbonated alcoholic drinks are fine, and I plan to try beer this week. I still avoid food 3 hours prior to bed, liquids 30 minutes prior to bed, and sleep on a slight incline out of habit. I eat a bit slower but this isn't necessary. I can also eat regular portion sizes again. I still have slight dysphagia, and the surgeon said this will never completely go away because I lack peristalsis. However, it's much improved. I still get spasms that last longer, and don't resolve with water. The surgeon said these will resolve themselves in Achalasia patients as our nerve cells deteriorate. 

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  • Posted

    Dear Kyle,

    Thank you for sharing your story.

    I just met with a surgeon yesterday and I am so aprehensive about surgery.

    I am 67, have had achalasia for many years but two years ago was diagnosed after all the tests confirmed this.  I put off meeting with the surgeon until yesterday since my symptoms are getting worse. 

    However, my symptoms are not as bad as others.  I have only had to run to the bathroom to throw up maybe three times.  Food does get stuck maybe three times a week and even water backs up.

    My concern is surgery starting a slippery slope of no return, that I will have to keep having procedure after procedure.

    I am also concerned about doing nothing but am afraid of it turning into cancer if I don't. 

    The plan is to have another endoscopy since my last one was 1 1/2 years go, then to go ahead with surgery.

    My surgeon warned me that if he found a spot of cancer (I guestt hat was't picked up on the endoscopy) he would have to resect more of my esophagus which really scared me. 

    I'm really afraid to go forward but afraid to do nothing.  I live close to and am going to one of the best hospitals and surgeons in the world but that is not comforting to me.

    Thank you for any support you can provided.

    So happy to have found this site.

     

    • Posted

      Hi LanaJoyce,

      I'm sorry to hear about your symptoms. I was diagnosed early, so I never experienced vomiting or having water stuck in my esophagus, but I've read plenty of cases of people who have experienced this and more. I suppose it depends on the stage of the disease and the individual. While I'm not an expert, I know that the laproscopic Heller myotomy done by an experienced surgeon will generally be successful in about 90-95% of cases. After 6 years, 80% remain symptom free. Of course, there are instances in which the myotomy fails, and this is usually caused by an incomplete myotomy, the formation of megaesophagus, or a narrowing of the esophagus due to hardened fibers (i.e. sclerosis). The good news is that failure of the myotomy due to incomplete surgery or sclerosis can usually be treated with dilation. Just make sure you relay all these concerns to your surgeon. Good luck moving forward!

    • Posted

      I think I understand how you feel, but having the right surgery done early can give better long term prospects because otherwise you spend longer and longer with food stuck in your oesophagus making it baggy and less amenable to surgery in the future.

      In so far as cancer is concerned, the endoscopy would be taking samples for biopsy.   There is a relationship between long term reflux / heartburn, Barrett's oesophagus and adenocarcinoma.   Uncomplicated Barrett's is not a problem as such, but it needs to be monitored so that if dysplasia is found (not cancer but a precursor) than it can be treated because of the higher risk involved.   There are plenty of people around who have had their oesophagus resected.   The surgeons cut out the section involved and join it up again with the top part of your stomach.   To contact others who have had this, try the Oesophageal Patients Association website or on HealthUnlocked.   It certainly is not a comfortable thought at the moment, but many others would find it reassuring that you were in the best medical hands.   I think you have to trust the judgement and advice of those who are the experts.   Ask then what they would do if it were their  relative, if it helps. Of course you would prefer the situation not to have arisen, and it is a matter of faith and quite a bit of courage to go through with this.   But, looking forward to when it is all over, I am sure you will be pleased, later, that you did in fact 'grasp the nettle'.

    • Posted

      Thank you for your thoughtful response.  Good advice!
    • Posted

      I have to echo what Alan just said about getting the surgery done early. My surgeon said the same thing to me when my Achalasia was detected in its early stage. It'll have a better prognosis, especially for the long-term if the surgery is done sooner than later. 

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