spasms after surgery or procedure

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Hi.  I've been trying to decide what treatment to get for my Achalasia.  I'm considering Heller Myotemy, POEM, and a balloon dilation.  For me, the worse symptom I experience is spasms.  On average, I get them every few days and, at this point, I can get rid of them quickly by gulping water.  From what I've read and researched it seems that the treatments available do not alleviate spasms.  My concern is this:  What if I get a procedure and the spasms get worse or my method of getting rid of them no longer works.  Every now and then I read stories like this, though I suspect it's different for everyone.  But I would like to hear from people who have had painful esophageal spasms and then had either surgery or the dilation.  How did the procedure affect your spasms?  Did they get worse, better, or stay the same? Is it easier or harder to get rid of them once they start?  Please specify which surgery or procedure you got.  Thank you!

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    I think (being unqualified medically) the important thing is to consult an experienced Upper GI surgeon and then consider their judgement about what procedure is best for you, because it is not as starightforward as you choosing a procedure from a menu of options.

    Achalasia is typically caused by the muscles driving the peristalsis, or swallowing mechanism in your oesophagus, not moving in a co-ordinated sequence.   Sometimes they do not move at all, and it is simply gravity that allows the food bolus to move towards your stomach.   And the lower oesophageal sphincter (LOS), between your oesophagus and stomach, is likely to be clamped shut, making food back up into your oesopahgus and putting a strain on the muscles.   It is typically not the muscles themselves, but the nerve endings that seem not to send the signals to the brain, that causes the problem.  

    The myotomy cuts the muscles holding the LOS and loosens it, allwing food to pass through into the stomach more easily with gravity.   POEM is a variation of this, where the muscles are cut within the lining of the LOS / oesophagus.   The advantage of having a looser LOS is that food passes down more easily, but the other side of the coin is that stomach acid can move upwards more easily too, because that is the purpose of the LOS.   So a myotomy, and possibly POEM will give you more reflux, and that in itself can have long term implications.   So invariably a myotomy is accompanied by a 'wrap' of the fundus, or top part of the stomach, around the base of the oesophagus, to recreate the effect of the LOS valve (called fundoplication).   You do not have a wrap with POEM, which is new to the UK.  

    A dilatation is relatively quick and easy, as the LOS is stretched with a balloon on an endoscopy device that is inserted through your mouth.   Dilatation can be effective, but in many cases might have to be repeated.  

    The spasms occur typically when the muscles at various points along your oesophagus are all contracting at the same time, probably because of the nerve signals they receive or do not receive.   It is very likely that if your LOS is sorted out, the spasms will improve markedly, so these spasms are related to what is going on around your LOS.    But there is no cast-iron guarantee.  There are medications like Buscopan that might help;  and the nerves / muscles are also likely to be affected by stress and tension, so whatever option you try, you will still have to try and relax for the eating process, which is easier said than done.

    There is some information on the website of the Oesophageal Patients Association under The Oesophagus - Achalasia and meeting notes.

    Some people have satisfactory results from dilatations, and as this is simpler all round, it is probably worth a try, but bear in mind that the best approach is to have a thorough examination and tests for a definitive diagnosisof exactly where the problem is, adn then go for the procedure that has best chance of success from the outset.   You can have repeat dilatations, but there is a risk that after a while the texture of the LOS area becomes fibrous, and this may inhibit  surgical options later on.   Neither do you want to put things off so long that your oesophagus becomes baggy and loses what muscle tone it might still have.  

    When you gulp water, does it drain into your stomach OK?   You will know better than me that loading up your oesophagus can lead to more weight of food in it, and if it sags below the level of the LOS there can be great problems for it clearing.

     

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  • Posted

    Hi Alan and thank you for your reply.  I have been researching this for a while and understand what you've described.  At this point, I'm trying to gather some "case study" type evidence since there is not a lot available in any scientific study I have read regarding my specific question about spasms and procedures, before and after.

    Personally, I had esophageal spasms for many years prior to having swallowing issues.  I think that spasms are the least understood of all esophageal symptoms related to Achalasia or as a disorder on their own.  There are different theories as to what causes them and there are a variety of different kinds of spasms that I've read about as well.  I don't really know what causes my particular spasms which makes this all the more difficult but I thought I'd start with this gathering of information before commiting to a particular surgery/procedure.  

    As for talking to surgeons, I have done so, but they generally don't keep track of patients for long after their surgery and don't study spasms in particular.  All I've heard from them is that the surgery does not help with spasms, only with swallowing and regurgitation.  In regards to GERD, they also disagree about whether POEM is more of a risk.  The Cleveland Clinic recommends the Heller over POEM for this reason but a top surgeon I visited in Oregon claims that they are the same when it comes to this risk. (Of course, he is a known POEM surgeon and while he has done many HM's and POEMS, he has made a bit of name for himself as a POEM surgeon, so who knows if this colors his perceptions at all.) I am also concerned aboout GERD, but don't know if this is what is causing my spasms.  I don't really think so as I've had my esophagus checked prior to having Achalasia (when I just had spasms and GERD was a suspect) and I had no damage that would indicate GERD at that time.  Anyway the doctors don't offer a lot of information on this subject.  

    I belong to some Achalasia Facebook groups and have read and participated in a few discussions on spasms in which people report different things about their spasms and their procedures but not enough to form any opinions on the subject.  Therefore, I'd love to hear from people who've had surgery or a procedure in which they can report a before and after scenerio regarding spasms.  I would be most appreciative of anything people could share.  Thank you!

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    • Posted

      I will ask others and report back!

      Concentrating on your own experience, however, you might wish to think about what the barium swallow and manometry tests (or even enoscopy) showed?   It may be possible that spasms have been exacerbated by lack of blood flow at some point, and that medication to address this might be entirely separate from surgical options?   I have no idea about whether it is possible but perhaps the neuron / ganglia higher up towards your throat may have been affected first, and gravity led to food passing through OK, but when the LOS became affected, this might have started the swallowing problems?   And perhaps the effect on the nerves may then have started reversing, or going in two directions?

      But on the basis that the LOS obstruction is fixable, and that the effectiveness of the ganglia probably isn't, it might still be worth getting the LOS fixed by dilatation / other procedure so that at least the swallowing is improved, and the nerve jangling from LOS upwards is reduced?   Then, or perhaps in parallel, try medication that might help the spasms?   I must say though that this is entirely non-medically qualified speculation.   And, as you rightly say, everyone is uniquely different.

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    • Posted

      I am a 30 year old female I was diagnosed with Achalasia/spasms/dysphgia/gerd when I was 23.  I have every symptom possible to describe all the diagnoses above. I was diagnosed early in my career in the Coast Guard and of course no offense to military physcians but most are not familar with anything like this so my diagnoses was drawn out for awhile until they decided that I didn't have just reflux but somthing more. So they decided to refer me out.  I have had 2 fundos, about 4 dialations and 3 botox injections. I have had the worse experince with this condition, I had my last dialation about 1 year ago and my gi doctor who is different from the one I had in the military. He tried a dialation that was a little larger than the previous one and this one has been the only one that has given me some relief, but only from swallowing. My spasms still happen frequently and my gerd reflux is the worst.  The emotional toll that this condition can put on someone is not measurable because only people with condition can really understand of the emotional roller coaster it puts you through.  I love when I hear such success stories it makes me feel good for those people because I know how hard it is to live with this condition. I have finally excepted that is is my life and that I will deal with this the rest of my life but my only major fear is what am I going to be like when im an elder still dealing with reguratattion and spasms and ect. 

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    • Posted

      It sometimes happens that spasms occur after the surgery, for reasons that are not always clear.   I suppose the first thing to establish is whether your swallowing is OK?   If at least you cvan take in nutrition, then that side of things has probably been sorted as reasonably well as it can be.

      ​It is possible that the spasms might be triggered by the reflux itself, and if this is so, then it might be a result of the wrap not being done to the optimum degree of fundoplication, but I am speculating without knowledge (or qualifications come to that).   So it might be worth trying further or different medication against the reflux (try Gaviscon, especially at night to see if this makes any difference).   And it might be worth trying medication against the spasms (eg Buscopan, nitrates etc).

      ​In any event I think you should consider a specialist secind opinion from a really experienced surgeon - and there are not many of those around, and it will depend on where you live.

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  • Posted

    Thank you, Alan.  You've given me some new things to think about.  If you do get some info. from others and can report back to me, I would appreciate it very much.  I'm just trying to make the most informed decision I can regarding what procedure/surgery to get with some foresight into the spasm issue.  One woman reported that since getting the surgery, her spasms last 8-10 hours a day and that what worked to alleviate them  pre-surgery no longer works post-surgery.  That's the worst case I've heard so far.  Another woman said that her spasms got much better since surgery.  And others claim they have stayed the same (I haven't heard anything about spasms  pre vs. post dilation yet).  So far, I only have a handful of reports about this, however, so I'm trying to get a large enough pool to, possibly, make some connections (which there may or may not be).  I think that this is an important issue for Achalasians as spasms cause so much suffering, are so elusive, and the medical community is so uniformed regarding them.
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    • Posted

      Amanda, from the London Achalsia MeetUp group (which you may be interested in) is more knowledgeable than I am, and talks to many achalsia sufferers.   She tells me that she suffered from spasms initially with her achalasia and eventually found that warm water stopped them if she caught it early, and that hot water bottles held on the chest are ver effective too.

      As you thought, there are differing results after a myotomy with some people suffering from spasms afterwards who never had them before, and Amanda believes that a myotomy is certainly not a cure for spasms.  She thinks that for most people they are about the same.

      She knows of a surgeon who does myotomies without a wrap, and of one patient who had a myotomy without a wrap about six years ago and who is very pleased with how things have gone.  She has been tested for acid reflux and so far so good.  No medication needed! 

      So that does qualify or change what I have said earlier.   It probably emphasises that individuals can have different outcomes in an area of medicine where practices can vary quite a bit.

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  • Posted

    Hi Alan.  Thanks for the update.  Is there a way to communicate with the London Meetup without actually attending events?  I live in Berkeley, California in the United States so I'd be limited to email exchanges but if that's available, I'd be interesed.  I may also try to start a meetup group in my area.  While I love to exchange ideas with people online, it would also be great to find local people to meet with.  Could make for some interesting potluck dinners! (ironic humor intended - something you brits understand but which I'm used to having to explain here in the U.S.). 
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    • Posted

      This site does not accept website addresses or email addresses but if you google Oesophageal Patients Assocation, then Patinet Meetings - Support Near You you will see the Achalasia contact point towards the bottom of the page.   There is also an organisation ased in the USA called Achalasia Awareness that you may be able to google and contact.

      I think 'pot luck' is about right as everyone can be so different, but meeting up to socialise together around appropriate food does sound like filling in a great gap in quality of life!

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    • Posted

      Hi Alan,

      Please do not say we do not accept website addresses as this is not true. They will go for moderation but will be approved if they are suitable links. We do not post email addresses but if anyone wants to exchange these or links without waiting for moderation you can use the private message service.

      http://www.opa.org.uk/

      Regards,

      Alan

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    • Posted

      Thank you Emis.   That is very helpful and I stand corrected!

      I have actually forgotten how to access the private message service and could not find how to do it;  otherwise I would have sent a private message direct - but I am sure it is simple really!

      Alan

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    • Posted

      Thanks, Emis.   I think I had not seen the envlope icons as I had not been signed in at the time.

       

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  • Posted

    Hi I have them everyday its been almost four years now and I'm finally going to get surgery my Dr tried to recommended me for the botox injections but, my GI speclaist said that it's too temporary and you'd have to continue most likely every 6-8 months and then could still lead to surgery and have complications due to tissue build up from the injections. The balloon dilation isn't as successful as you'd think either according to him it's also temporary. I'm having the one that involves putting a small ring of magnesium balls in the esophagus to stop the spasms. Hope this info helps.
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    • Posted

      The device with the magnetic links is called Linx. This can help with reflux, so if this is contributing to the spasms it may help.
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    • Posted

      Thank you, Alan.  I'll ask about this.  Of course, sometimes spasms are unrelated to reflux, which I think is the case with me.  I don't know of anything they have for that, other than painkillers, which only work for some.  For me, drinking water helps now, I don't know after surgery if this will continue to work, hence my investigation regarding surgery and spasms.  
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    • Posted

      Do you have difficulty with swallowing, and food entering your stomach? The surgery would likely help with this. The spasms would prevent the passage of food working normally. As with many instances of muscle spasms they can be difficult to cure
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      Yes, I have difficulty swallowing and having food enter my stomach.  I have type 2 Achalasia.  My spasms occur outside of eating, not with eating as they do with type 3.  I've heard that the surgery only helps with swallowing and regurgitation, not spasms.  But my inquiry has to do with whether or not spasms can get worse after surgery.  Also, I want to know if the methods for relief of spasms change after surgery.  
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    • Posted

      Yes, I understand that the priority is the spasms for you. I do not think there is a guarantee that the spasms would improve, but the surgery would likely improve the swallowing and would be worthwhile for its own sake because the chances of surgery being successful do not improve with age. And the surgery would cut some muscles if it is a myotomy or POEM, so that would have some effect. But it is different for individuals and the question us really one for your surgeon as the best person to assess the risk and benefits.
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