Life after heller myotomy

Digestive health
1

Hey guys

I'm scheduled to get my heller myotomy operation in a couple of months however I have a number of questions about this operation.

1. I'm an active guy and take part in many sports, could this survey affect me taking part in these sports ?

2. If surgery isn't as effective, can you get the Botox etc. After surgery ?

3. Do the symptoms go away ? ( I know that achalasia is incurable)

4. What was your experience after surgery?

I appreciate the feedback, I'm just so misinformed about this condition and I'm in desperate need of answers.

Many thanks

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* Read the other post regarding Heller’s also, it was posted a similar time to yourself called Post Heller Myotomy surgery.

Please let me begin by saying in my experience everyone is different and as one size does not fit all when it comes to treatment, the same appears to be true when it comes to success rates and how the surgery will ultimately affect you.

1. Initially surgery tends to be an uphill learning curve but eventually you will develop strategies to cope with how it has left you. As for Sports, there will be a period of healing. It would depend on how much nutrition you have on board and you may need to plan your activity to ensure you have enough nutrients on board to sustain you during activity. Your stomach is reduced in size post-surgery and so what you consume needs to high in nutrient within small amounts.  As with all sporty activities Whey and Casein shakes are always an option along (to boost stamina) with creatine to ensure you have carb take-up depending on whether you are using fast twitch or slow twitch muscle activity. Monohydrate Creatine will ensure you have already begun the breakdown. BUT you will have to see if you are able to tolerate these post-surgery.

2. In short yes. One of the ladies on here I recall had dilation post-surgery and my husband has had Botox with good affect – the surgery needed a little tweak to make it truly affective.

3. Not completely. Your anatomy is changed forever and you have to learn to use this new mechanism of eating. The way you ate before will change I am afraid. So you have to learn what foods you are able to manage to consume and tolerate. It is a learning curve. Initially at least, the quantities are very small. Symptom wise, if you get it wrong, you will probably still have swallowing issues and maybe even spasms. But these tend to lessen. GERD is a genuine hazard post-surgery too and medicinal management is the key here.

4. My husband is three years post op and now lives a normal life within the confines of what they surgery has left him with. He manages the GERD symptoms well (to the point where he says he does not have it anymore!) and eats mainly soft easily digested foods. But he still rides a Motorbike, bicycle, swimming and enjoys his pre surgery activities. He has even managed to gain a little weight! He and I often eat out and he can always manage to negotiate a Restaurant menu.  

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Thanks for the reply, it's extremely helpful !

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Would you say your husband lives a fairly normal life post surgery ?

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Everyone is different when it comes to the healing process. This is very sensitive and highly

vascularized areas within the body. If your sports doesn't put a lot of straining in the upper GI tract and stomach, most return to full activities within a month or few weeks. It may be a bit longer say if you were weight training.

I personally haven't ever heard of one getting Botox after a Myotomy because the LES is more or less removed and a makeshift valve is created. I'm curious to know if you've considered less invasive options before undergoing a Heller Myotomy? You

may be a candidate for nitrates, Ca Chanel Blickers, Botox and pneumatic dilatations that could buy you perhaps a year or more relief. Then, you may be a candidate for having them repeated. I personally think it's best to start with less invasive procedures first before undergoing a Myotomy and/or a Fundoplication, a Myotomy or a POEM. Everyone is different though and you may not be a candidate for some of them or you may want to go ahead with surgery. Again, I think less invasive procedures are best to start out with.

The symptoms will be improved, but just like my surgeon told me you may always feel it somewhat difficult for food to pass through the LES into the stomach. You have to remember that your perestslusis and low motility will still be part of the equation. No surgery or procedure will eliminate all of your symptoms. They mote or less just decrease them so that you can get the relief that you need and go about living a strong, healthy and more manageable life. Also, after surgery there is a chance that you may develope acid reflux/GERD after a Myotomy. This isn't a definite, but there's a strong probability that you might.

I have type 3 spastic Alchalasia which is the hardest to treat according to my GI specialist, surgeon and what I've read. I chose to have Botox first about 4 weeks ago and my symptoms totally subsided for about a week then I started back aspirating in my sleep. This is highly unusual because Botox can last 4 to 6 months and even longer for some people. I'm not a candidate for a pneumatic dilatation. So, for now I'm sleeping sitting up and my aspirating has decreased. The surgeons that I've met with have all told me that a POEM or Dor Fundoplication with a Myotomy is what I need. I'm in Birmingham and work as a Cardio/Thoracic RN at one of the most world ranked institutions. Especially in Cardiology and cancer research. However, we don't do POEMS as of yet and I was referred to one surgeon at Northwestern in Chicago and another in Baltimore.

I wish I could tell you more about what the surgery is like. I'm sure you'll learn a lot here and through your own research. I know that acid reflux is one symptom many experience after their surgery. My surgeon told me that I will always feel good and liquids getting hung up a bit.

Please consider all your options and think about

going with less invasive procedures first. They could by you years of relief before you have to have surgery. That's just ones personal decision.

Good Luck!

DJRN

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He works full time and is completely active, YES he lives a normal life!!!

He has learned that certain things (stressful situations, emotional disturbances, overly rich, fatty or spicy foods) will trigger spasms, pain or inabliity to swallow and so knows not to attempt to eat if he has had a heated argument etc! He gives himself time to relax, some I have known to use meditation.

   

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Mathew, I'm sure you will do well. Just don't be afraid to ask questions and make sure that you and your surgeon are on the same page. I don't know anything about your case, but I'm curious as to why they are just doing a Myotomy on you and not one of the four Fundoplications? If you haven't already, please get a second, even a third opinion from both a GI specialist and surgeon alike. Many surgeons excel in one particular method of doing surgery and not always does that mean what their expertise lies in is the best for you. I think a GI doc who specializes in Alchalasia would be most beneficial in telling you what type of procedure you need. They have nothing to lose or gain as a surgeon does. I've been told that I am against surgery by one on here when that's far from the case. Because I have stage 3 spastic Alchalasia that is the most difficult to treat I am just a big believer in one going with less invasive measures first before surgery. One, it can buy you more time and two, during that time new advances may come about that they may not have known about earlier.

You take care. Wish you well.

Btw, just listen to other people who have actually had the surgery or disease for that matter themselves.

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Thank you for the response, I really appreciate it !

Initially after researching I decided I would like to try less invasive measures rather than surgery. However here in the UK, the NHS apparently only allow people who are not candidates for surgery to use Botox and other less invasive methods. I was disappointed and annoyed with this, but I guess I'll have to go with surgery if it's the only method to relieve the symptoms

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Speak with your surgeon and ask if you could pursue others courses of treatment first if that is how you feel. Ask his advise and hear why he feels that way. He is best to advise you and unlike those in other countries who pay for treatment, a national health surgeon has little to gain from suggesting surgery first and foremost rather than less invasive methods.

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Mathew, Carol is right. There may be less invasive procedures such as a pneumatic dilatation, Botox, nitrates or calcium Chanel blockers that you may prefer before undergoing radical surgery. The only disadvantage with some of them is the fact that they are just bandaids and usually short acting. But, a dilatation can buy you up to a year or even two at times. No one can say for sure how long any of them will last. Not even the Dr. performing them. It's more or less a waiting game and everyone responds differently. If your surgeon should say that you are not a candidate for anything but surgery, that would just be another reason why you should get a second, even third opinion. I have stage 3 spastic Alchalasia which I've been told is the most difficult to treat. I've seen 3 GI specialists for Alchalasia and 3 from surgeons. ALL of the GI specialist suggested that a POEM would be the best route for me. Each surgeon I saw had a different opinion than their colleagues. One may ask why? As I've said many times, just because a surgeon may excel in and be known for doing one particular type of Fundoplication etc. best, doesn't necessarily mean the one that they do is the best for you. That's just another good reason to get a second opinion and know this disease frontward and backwards so that you will be more apt to play a role in the decision making process.

I wish you well!

Regards,

DJRN

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Mathew, are you in both the physical and financial position to fly to another institution where they specialize in Alchalasia? I'm having to fly from AL. to Baltimore in the USA. If you are, I would research the closest facility to you, write whoever the head of the GI department is and tell him a little about yourself. I had to do the same thing with a Dr. I recently saw. The wait time was four months and I told him that I couldn't wait that long and would he agree to see me earlier. A week after I wrote the letter, he emailed me back and agreed to see me two days later. We MUST take our own health by the horns and play an instrumental role in it. If you think that your Primary care Dr. will do a better job at it, I think you would be mistaken. Sometimes we get lost in the shuffle and placed on the back burner.

could you make that move?

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Hiya Matthew, I've just seen your question on here and thought I'd share my experience with you. I,like you,was very worried that I wouldn't be be able to keep up with my level of fitness after the heller myotomy. I'm older than you(50!) but have always kept fit. I had the op in October and since then have been eating anything I like(it feels like a miracle to me), have been running(did Debrovnik half marathon last week), hillwalking(carrying really heavy rucksacks) and cycling every day(and carrying bike up 4 flights of stairs every day). I very rarely think about the surgery I have had..I just feel completely normal and I'm sure you will too! Your op will be fine! Enjoy being pampered for a couple of days,recover for a week or so then keep up your wonderful fitness! Best wishes, Colette x

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(p.s..I had fundoplication as well as myotomy) x

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I'm so glad to hear you had good results.

Stay Well!

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Brilliant! Good to hear this! That's two then, yourself and my husband. You are both fit and well and enjoying life x

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That's even better to hear. Many people have ongoing issues after surgery. And I feel so bad for them to have had the surgery and go through the healing process only to develop other untoward side effects/symptoms afterwards. I'm so glad you did well. I'm a big believer in less invasive procedures before surgery because I've known a few and have had patients post Myotomy and/or Fundoplications. Many of whom didn't do as well as they hoped for. But often, it just takes time and perhaps some fine tuning afterwards to bring them around.

Kudos your way!

DJRN

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Thanks everyone for the responses, they have helped to reassure me and allowed me to see that their might be light at the end of the tunnel ! 😊

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Indeed. Just follow it carefully and learn all you can along the way.

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Hi Matthew. I was offered all of the treatment options on the NHS. However my consultant was concerned that the other treatments can cause scarring and the potential effect this could have on any future surgical outcomes. I have no other health issues and like you am fit, active & healthy person who was had reached the point where i was struggling to eat liquid foods.  I recently underwent surgery (including anti reflux) and can now eat solid food. I was only in hospital one day. I still need to eat carefully and drink plenty of water to wash food down, but can eat. Some foods can cause dis-comfort, but have not resulted in chest pains, etc. I have suffered from acid following the op. Anti-acid meds help with this. After 8 weeks I have returned to horse riding. My doctor has said ok, but be carefully. Following surgery take your time & do not rush to resume to much activity all at once. Remember you still need to heal inside, which can take sometime. Too much exercise too soon can also trigger acid attacks and may effect your outcome, so it is better to listern to your doctor, heal & adjust first, before resuming your normal activies. Through reading & research reference what has helped other suffers I also on a daily basis drink Innocent coconut water and have 2 tablespoons of Manuka Honey NPA 15+. Coconut water is supposed to reduce stomach acid & research is currently being completed on Manuka Honey on it's ability to assist in combating MSRA & inflamation of the oesophagus. Both have helped me pre & post op. I know that surgery can be frightening, but the result is worth it.

I hope the above information is of use to you.

 

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I had the surgery in 2014 . I am able to eat still but after the surgery my acid reflux gets so bad I feel like I'm having a heart attack I'm in so much pain I have tried every medication and nothing helps. I have these chest pains at minimum 3 times a week that last hours at a time.