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

Digestive health
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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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Quite a few spelling errors as I read this over again. Is there a way to edit your posts that I'm not seeing? 

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Hi Kyle.  Thank you for your full report.  It helps me as I think how to proceed with my Achalasia.  I never heard of this staging before, only types of Achalasia.  For example, I'm type 2 which I've been told has the best prognosis for treatment success.  I don't know what stage I'm in, however, so it would be interesting to find that out.  Do you know what criteria they use to determine that?  Also, I've been recommended the Dor Fundoplication.  How does this compare to Toupet?  I've been debating the HM with Fundoplication vs. POEM for a variety of reasons.  I've heard mixed things about percentages of people who get reflux (for both POEM and HM, even with Fundoplication).  I've also wondered about what some describe after HM of feeling like their stomach is smaller (can only eat small amounts at a time) and having difficulty with throwing up (in case of the flu, etc.).  But then POEM hasn't been around as long and there is the lack of wrap which may help with the reflux issue, so I don't know.  One last thing:  the spasms!  They're my biggest issue.  My first symptoms of Achalasia were also the spasms and I've also been fortunate to learn that gulping water immediately relieves them.  My biggest fear of surgery is what you describe - worse spasms that no longer respond to my sure fire method!  To be honest, I would go without surgery completely (at least for now) if it weren't for the fear of megaesophagus.  I think of it as more of a preventative measure than a fix because my dysphagia symptoms are generally mild.  I can eat almost anything as long as I have water to drink.  Of course, maybe this is due to my esophagus stretching as you suggest so that's a scary thought.  But then my symptoms have always been mild since I started having them a few years ago.  Well, I started having the spasms, perhaps around 15 years ago (also told it was GERD related) but started having dysphagia around 3 years ago.  I've spent time since then doing research, pursuing alternative healing approaches, and monitoring my esophagus as much as I can without overdoing it since the tests come with their own risks.  Anyway, I'd love to hear back from you.  Thank you!  Amy

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Hi Amy, as far as I know the staging of Achalasia is based on a number of factors including the contractions of the esophagus and it's diameter. For example in Stage I you might have minimal contractions of the esophagus and a very tight sphincter that won't relax after swallowing. In Stage II, you'll lack peristalsis completely and have spastic contractions. In Stage III, the bottom of the esophagus might have intense contractions, all based on manometry. If the staging is based on visual techniques, then the diameter of the esophagus will be the main indicator, with a larger diameter indicating a later stage. Right now, there's a lot of controversy over how to stage achalasia. 

The Dor procedure is a 180 degree wrap that's the loosest of all the different types. Here, the stomach is wrapped just halfway around the esophagus to create a loose artificial sphincter. The Nissen is on the other end of the spectrum being a full 360 degree wrap. Many people (at least in forums) complain of never being able to burp or vomit, and you might suffer from worse dysphagia as well. You may also experience gas buildup and more farting with the Nissen as well. However, in one study, dysphagia resolved after a couple months in all 40 patients who had the Nissen wrap. The Toupet is right in the middle at 270 degrees, forming a sphincter that's a little tighter than the Dor but a little looser than the Nissen. With the Toupet wrap, you can still burp and vomit. I burped on my first day, and the surgeon said I was doing well and ahead of schedule when I told him about it. For a couple weeks my burps were always preceeded by a hiccup, but now I can burp normally and I'm sure that I can vomit too. I had a super tight esophageal sphincter, but my surgeon still recommended a Toupet rather than a looser Dor. I was worried that I'd have a higher chance of acid reflux if I had chosen the Dor. In a 2014 study comparing the Dor to the Toupet, there was improvement in treating reflux after both, but people with the Toupet had significantly better outcomes.

My surgeon was qualified to perform both the POEM and manual HM, but still recommended the manual procedure because it allows you to do a wrap and prevent acid reflux. He also said that POEM was still new, and there were no long-term studies. 

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One more thing to add:

My surgeon told me that one of the best indicators of a good prognosis was the length of hardened muscle in the esophagus. You can only tell where this ends during surgery. He told me that I just had a 1 cm long stretch of hardened muscle, which gave my disease an excellent long-term prognosis. In some people, he had to keep cutting the esophagus until his scalpel was at the upper part of the patient's chest. These cases typically have a poor long-term prognosis. I asked him if that hardened muscle will grow longer over time, and he replied that it wouldn't though I don't understand quite why. Also keep in mind that even if you have a small length of hardened muscle like me, you'll still be cut a minimum of 10 cm along your esophagus. In papers studying the length of the cut in resolving the symptoms of achalasia, it was found that the cut needed to be at least 10 cm for the surgery to be a success. 

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Hi Kyle.  Thank you so much for your response.  And congratulations in having a successful surgery!  I do hope you get relief from the spasms.  I've heard that some people have success with medications.  And some find relief with cannabis (if you're open to that).  Your doctor seems very knowledgable about Achalasia.  Can I ask you for his name and where he's located?  I'm in the process of searching for an experienced and knowledgable surgeon who performs both surgeries.  I live in the east bay in northern California but would consider traveling for the right surgeon.  Thank you!

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PM sent! I just prefer not to give out too much personal info in forums. 

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I had a HM with dor fundiplication in 2000 after several years of miss diagnosis. I was suprised to hear that the dor is the loosest of the wraps. I have not thrown up since my surgery and I have only burped a handful of times. I have had very little, almost no reflux. The one downfall is that as your nerves and muscles

deteriorate it becomes increasingly harder to get food past the

wrap, even a loose one. Now 16 years later after very much relief I will be going under again to have the wrap taken down. I now

struggle very much and am having sever esophagitis due to the

food sitting to long. I have heard this is a common problem.

With all that being said I don't think I would change a thing. In regards to the spasms, again different with everybody, mine didn't start until about 5 years after HM. My biggest problem was

dysphagia and regurgitation. I lost 80 llbs. In the 2+ years it took to diagnose and find a surgen.

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Hi Kyle

I found your report very interesting and found so many similarities with my own case. I was sitting at work eating a sandwich and suddenly found I could not swallow it and ended up in the mens room vomiting most of what I had eaten. After all the usual tests i was diagnosed with achalasia in Feb 2013. At this time I was having severe difficulty swallowing and was sleeping at almost 45 degrees to try to prevent the reflux of food stuck in my oesophagus.I had all the usual symptoms of pain etc that you and others describe.

Then in Oct 2013 I went into hospital and had a Hellers myotomy and a partial fundoplication. I was surprisingly well post op and I seemed to be swallowing quite normally. Post op my surgeon recommended two weeks of a liquid diet, i.e soups etc and then the next two weeks a baby food diet and the third two weeks a more normal diet. As hard as it was this worked for me. I also continued taking pantoprazole a proton pump inhibitor and I do to this day.

My recovery was unremarkable. perhaps the only symptoms I was left with was an occasional pain in my stomach just under the bottom of my  sternum which felt like really bad acid indigestion. It was also accompanied by pain in between my shoulder blades and was only partially relieved by walking around for hours. I tried all sorts of medication such as other antacids and also "windeze tablets" as I wondered if it was trapped gas. I found that drinking cold water did help it a little. My surgeon did not have any real idea as to what it was. I also found it became worse when lying in bed on my right side so wondered if it might be stitches pulling??

Sadly in Dec 2014 I noticed a worsening of my symptoms again and experienced some difficulty swallowing each mouthful. Food would go down aided by a large mug of tea but when it got to my stomach there was a lag phase before it finally got into my stomach. Quite a weird sensation when eating ice cream. I found some foods got really stuck.Bread and rice were difficult and I found that chunky vegetables were easier. It was as if once I had got the first one or two mouthfuls to go down the valve opened a bit and every one after was a lot easier. I did eat normal size meals. I also had one or two occasions similar to when I was pre-op i.e food getting stuck and having to rush to the mens room to throw up what was stuck. It was all highly distressing.

I went back to see my surgeon and had a barium swaloow which showed I had some tightness at the bottom of my oesophagus which was also now quite dilated. I have no preistalsis whatsoever and food goes down with gravity and tea!!He suggested that this might be some muscle fibres he missed dissecting or fibres that had re-joined. In May 2015 I had a dilation under GA which did absolutely nothing to improve my symptoms and so I went back into hospital three days ago and had a re-do myotomy and repeat partial fundoplication.

The surgeon had warned me that this surgery is technically very tricky second time around and there is a high risk of perforating the oesophagus or stomach. But post op he said he had managed to get some muscle fibres he had missed and had sutured them out of the way to prevent rejoining. He was confident he had done some good but remarked he would not be doing the op a third time. He also felt that it was unlikely my oesophagus would dilate any further. I was glad he used the same scars to insert the laproscope. I had an iodine swallow the day after which showed no leaks but showed a continued lag phase as liquid passed into my stomach through the wrap. My surgeon said he was not unduly worried at this as there was a lot of healing that needed to take place and swallowing would improve over time. He said the wrap often loosens and it all improves but in some cases he often sees a return of some reflux as the valve is now so loose. Interestingly last time I used some Bio Oil each day that my daughter  in law purchased to deal with stretch marks in her pregnancy and this oil helped heal my scars to the point that they were almost invisible. I shall use it second time around!!

Ok so I am a few days post op. This time round my abdomen hurt a lot more and i felt quite a bit under the weather. I am on the soup/baby food/ normal diet for the next six weeks and the surgeon was insistent I stick rigidly to a liquidy diet for two weeks. This is to avoid any damage or perforation as the tissue tends to be very thin and also to aloow any inflammation to settle down.

I enjoy various M&S soups and I can also manage milky porridge (which is like a soup) and i am eating yogurts and ice cream a go go.

I am still suffering the stomach cramp pains and find cold water still helps but would love to know just what is causing these pains. Is it trapped wind? Is it stitches? Is it acid indigestion (unlikely as I am taking proton pump inhibitors) and i also take paracetamol which helps relieve the pain or is it just pure and simple achalasia spasms?

I have agreed with my surgeon that we will not do a third op unless there is extremely good reason to do so. My surgeon said he has completed loads of these ops and considers himself very experienced but he did remark that my op caused his hearts to miss a few beats. I think this was because of the scar tissue he had to get through to get at the fibres and a perforation would have been a back wards step ( the stitches to repair that and the resultant scar tissue cause a further narrowing of the valve)

But I am sitting here typing this and drinking a large mug of warm tea and I am finding that it appears to go straight down..so fingers crossed.

Thanks for putting your `story` on here insuch details and Ihave added my own as I hope anyone suffering with achalasia who finds this will learn something and help them understand what is going on and so what they can do to help themselves.

Knoweldge is power!!

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Thank you for these very informative stories.   It does go to show the value of having experienced surgeons.   

There are a variety of 'wraps' and it seems best to trust the experience of the surgeon on how far round they should go.  

The texture of food, especially white bread, rice and fruit / veg with skins, do often give trouble.

I wonder whether the indigestion is like colic / trapped wind?   The digestion system will not have had so much food to cope with for a long time, and perhaps it will take some time to get trained into coping better?   So it might be like a baby's system and might respond to gripe water?  

If not that, and this is completely off-the-wall speculation, I wonder if the sugar content makes a difference?   The body will produce insulin to keep the proper balance, but perhaps it has to get used to the process of re-balancing again after so long not accepting normal quantities of food in your intestines?   As I say this is pure speculation and may well not be true for you at all, so take this suggestion with a large (metaphorical) pinch of salt!  If you start to feel dizzy or clammy an hour or so after eating, try drinking something sweet.   If the symptoms rapidly disappear, it would indicate that it might be a form of 'dumping syndrome' (an insulin spike).

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Hi

I haver had these stomach pains ever since I had the first operation in 2012 and they have never gone away. Even after the second op they are still with me. Its difficult to describe but its like a cramping pain that starts in the stomach at the tip of the sternum and develops into a pain that goes to the middle of my shoulder blades. Walking around helps as does drinking cold water and taking a couple of paracetamols. I think it has something to do with the wrap and it may be caused by trapped wind which is a problem with this op. I did once upon a time think it might be a touch of pancreatitis but that condition develops further and has other symptoms I dont have.I think it is a windy problem and gas presses on the wrap causing the discomfort. I wish there was a tablet that took away wind in an instant ;-)

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I imagine that you have already consulted the specialists about this pain?   I do not know whether some kind of relaxant medication before eating might help?   A gastroenterologist might know, preferably one linked to the unit where you had your surgery. 

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Yes did mention it to the surgeon, a few times. I am sure it is wind getting trapped so I am now trying hard not to swallow air wheneating which is quite difficult. I have always been a fast eater so I am training myself to slow right down.

I would be interested to hear from anyone with Achalasia that feels their condition may have developed after a bout of shingles or other virus.

I think mine came on after shingles, which also affected my hearing and also nerves in my bladder. I saw a urologist who prescribed me cialis to increase the blood flow to the bladder and this helped those symptoms but interestingly if I took a tablet half and hour before having a meal, my swallowing improved dramatically. I only take this three times week but on the days that I do I know I will have little difficulty eating

 

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I have read of other people's positive experience with cialis - and heard that blood flow can be a factor with achalasia - so it does sound very likely that this does help any bloodflow issues with achalasia.

Yes, trapped wind can be caused by swallowing air with food.   It may be a right pain, but chewing things really well and thoroughly can be very beneficial.

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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.

 

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I might have misspoken when I said that the Dor was the loosest. I know the Nissen is very tight, and the Toupet is looser, but I just assumed the Dor was even looser because it has the smallest amount of wrap around the esophagus (180 degrees vs 270 for Toupet and 360 for Nissen). The Dor is an anterior wrap while the Toupet is posterior, so maybe it's not as straightforward to say that less angle means less tight? I'm sorry that you're experiencing severe symptoms again, but it's good to hear that you had 16 years of relief from the surgery. I see new research looking into esophageal transplants, and even tests of an artificial esophagus, so hopefully in the near future we might have some better options available to us. 

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Thanks for sharing your story too graeme. I can't help you with diagnosing the pains, but hope that this time the relief lasts!

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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!

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Thank you Kyle!

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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'.