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Has anyone looked into going to a Neurologist to get the nerves working again?

Posted , 7 users are following.

s091a
s091a

Hi all,

I have been diagnosed with Achalasia.  I am having surgery (Heller Myotomy) next week.  I don't like the idea of my muscles being cut however I have extremely painful spasms in the esophagus that can last for hours.  I  have been having the spasms off and on for years now.  I started having symptoms around difficult swallowing this year however it is infrequent, and I can handle it.  

I have been told that my muscles don't function at all when I swallow.  It have been told that this is not a muslce issue, it is a nerve issue.  Apparently, my brain is not triggering the right nerves when I swallow - this is my understanding.  

I am wondering if anyone has looking into going to a neurologist for this condition.  I am wondering if the brain can be retrained to use the proper muscles when swallowing as well as loosening the lower esophagus muscles.

Any input is greatly appreciated.

Different subject:  I don't have a good understanding on what is causing the esophageal spasms.  I am curious if Heller Myotomy has helped getting rid of the spasms.  

Thank you,

Sonia

 

0 likes, 13 replies

13 Replies

  • AlanT
    AlanT s091a

    Posted

    Hi Sonia, I had Heller's myotomy 30 years ago and your symptoms (e.g. painful spasms) sound much like mine before I had this op. It sorted me out, not 100% but well enough to enable me to live a normal life. It has gradually got slightly worse again - I've just endured three weeks when it was difficult to swallow even liquids - but I'm glad I had the op.  Alan
    • s091a
      s091a AlanT

      Posted

      Thank you Alan for your reply.  I have not talked to anyone that has had this surgery.  It is great to hear that the surgery worked well for you.  I am curious about when you said you weren't 100% fixed.  What does that mean?  Were you still having spasms but they were not as often or last as long?  

      As the surgery date is getting closer, I am starting to worry about side effects.  My surgery is next Wednesday.

      Thanks again for your input!

  • AlanT
    AlanT s091a

    Posted

    Since the op my oesophagus is unable to take much part in helping the food down to my stomach - I have to rely mainly on gravity. But occasionally the sphincter (?) that lets the food (and drink) in to my stomach won't open and so I still have problems. But It's a lot better than it was before the op. No, no more painful spasms.
    • s091a
      s091a AlanT

      Posted

      I have been told that my muscles don't work at all when I swallow so my food goes down via gravity.  However I have a feeling that my muscles sometimes do work when they are not supposed to be hence the spasms as well as the fact that I don't have difficulty swallowing most of the time.

      I am looking forward to no more painful spasms.  Your response put a big smile on my face and has given me hope.  Thanks!!!  

    • s091a
      s091a AlanT

      Posted

      Hi Alan,

      I had one more question.  Do you know what type of Achalasia you have?  Type I, Type II or Type III?

      Thanks,

      Sonia

    • AlanT
      AlanT s091a

      Posted

      Sorry Sonia, I've no idea. In fact I just had to look up what the difference is between the types and I can't recall having manometry tests 30 years ago. Incidentally, in case I worried you when I said I still have problems swallowing occasionally, I must confess that I don't manage my achalasia very well. If I did then I'm pretty sure I would have fewer problems. I don't try hard enough to stick to a sensible diet, by which I mean principally not eating too much. I should restrict myself to a very light breakfast and just one decent size meal a day, but I keep lapsing and act like I can eat normally. But I can't now.
  • Merryl
    Merryl s091a

    Posted

    Hi Sonia, I have been diagnosed with a dismotility problem and get really bad chest pain, but dont know if it is caused by the spasms or not. Could you tell me what your spasms are like. Mine don't last long but they feel like a heart attack and I get facial flushing when I have the pain, but my heart is sound. Wish you all the best for your operation.... Merryl   
    • s091a
      s091a Merryl

      Posted

      Hi Merryl,

      For some of my spasms, I have the same symptoms as a heart attack.  The pain starts from the jaw and starts working its way down.  Most of the time it is sharp pains right between my breasts.  It is not a burning type of pain so I assume it is not heart burn related.  

      As for getting rid of the spasm, sometimes drinking cold water works right away, and other times nothing helps and it last for hours.  It is extremely painful, and if I get the spasm at night, I cannot sleep.  Note, I never had regular spasms (ex. everyday or every week).  They are inconsistent, and I have never been able to correlate any food or stress or drinks to them. 

      Here is a history of how I was diagnosed for Achalasia:  

      At first, Gaviscon seemed to help the spasms so I thought it was acid reflex and maybe it was at the time (1997).  Then I couldn't get the blue "acid reflex" Gaviscon anymore.  After that the doctors gave me all kinds of acid reflex medication to try but nothing helped.  Eventually, I was sent to a GI doctor, and she requested an esophageal manometry.  The results showed that my esophagus did not work normally,  That is when I was sent to see a motility specialist at Stanford.    

      My doctor at Stanford did a few tests.  We tried calcium blockers and other medications.  Nothing worked.  Then she gave me a botox shot in hopes to paralyze the muscle that was spasming but that did not work either.  I never got an explanation on why I was having these spasms.  Finally, I found out I had achalasia and had to have surgery.  I was not happy when I heard that so I went to get a second opinion.  I had to wait 8 months to get an appointment with my current doctor.  He performed a few tests and confirmed it was achalasia.  Apparently, my muscles don't work at all, and my food goes down via gravity.  I have been told it is not a muscle issue.  The issue is with the nerves.

      Since the problem is really with the nerves and not my muscles, I am wondering if anyone has seen a neurologist for this issue hence the reason I started this discussion.  The heller myotomy is not fixing the root issue with the nerves but helping loosen up the lower esophagus which is constricted.  I am scheduled for Heller Myotomy next Wednesday, and I was happy to find this forum yesterday.  

      I hope my response helped.  If you have additional questions, let me know.

      -Sonia

      p.s.  For others that are reading this.....Please note, I don't have the classic achalasia symtoms.  I also don't have a similar esophagus then most people with achalasia.  My esophagus looks healthy, and it constricted in the lower quarter.  

    • Merryl
      Merryl s091a

      Posted

      Hi Sonia, There are other people on this site that have achalasia and have had operations. If you type in achalasia they should come up. I was told my dismotility problem is not too bad after I had an endoscopy. I get food sticking so I eat soft foods only. I would like to find out what is causing the pain. I also have an hiatus hernia so it is difficult to know what is causing the pain. I have'nt been told I need a manometry. My Dr have referred me to a gastro Dr so don't know how long I have to wait for that. I had a barium swallow 2 months ago and that's when I was told it was not too bad so hope it does'nt get worse.

      Let us know how your operation goes....Merryl    

  • AlanJM
    AlanJM s091a

    Posted

    It is my understanding as well that it is the nerve ends that affect the way that the muscles work in the swallowing process, particularly the sphincter valve between the oesophagus and the stomach that gets stuck either wide open, or clamped shut.   The nerve system is almost certainly connected to the vagus nerve that affects a lot of the digestive system.   It sounds a good idea to try and stimulate the affected nerves into working better, but I suppose that is a lot easier and more controllable for risks to do surgical procedures on muscles.   I haven't heard of neurologists being able to sort out the nerves in this way.  The same nerve system affects things like diarrhoea and how the suagar:insulin balance works so the risks involved would be considerable.   But I am outside my normal sphere of knowledge on this aspect, so always best to ask your own specialist doctor what they think.

    If food cannot get past the lower oesophageal sphincter it does create all sorts of tension and strain on the system, and the myotomy helps to release that.   It is the kind of procedure that sometimes gets done when people have their oesophagus surgically removed and adjustments need to be made, and it is regarded as routine in those situations (which does not make it any less scary for you, I appreciate).

    I imagine that prolonged achalasia does have an effect on the brain signals.  To the extent that somebody might feel able to be more relaxed and thereby reduce the tension in the nerves / muscles, it ought to be beneficial to think oneself into being more relaxed and make the muscles more normal.   But is is easier said than done. 

     

    • s091a
      s091a AlanJM

      Posted

      Thank you for the response.  I am now deciding between POEM and Heller Myotomy.  I was all scheduled to go this week with Heller however the POEM surgeon called me last Friday, and now I am confused.  

      According to the POEM surgeon, Heller will not help with my spasms.  The reason I decided to get Heller Myotomy originally was due to the extra fundoplication procedure.  I didn't want to come in for another operation if I was having problems with acid reflex. Also, since POEM is still a new procedure, and there are no long term results. After talking to the POEM surgeon, I am confused.  

      I posted another discussion hoping to get input from others but I haven't had many people reply.    

    • AlanJM
      AlanJM s091a

      Posted

      There are not all that many people who have had the POEM procedure in the UK because it is new here.   There are some comments on the website of the Oesophageal Patients Association under The Oesophagus and Achalasia.   Basically, people who have had both procedures have felt happy about them afterwards.   I suspect that there is no right or wrong answer, but that the procedure should be tailored to the detailed diagnosis of your condition, and you should be able to trust your surgeon. 

      The other aspect is that you might like to think of the longer term issues.   If either procedure is effective for just a few years, you would like to think that there are other options that might be applied if things deteriorate in the future.   As far as I am aware I do not think either of them closes off options but it is something to ask the surgeon about, even though you can really be a lot more optimistic than this.

      Having said that, the best advice is to go for the definitive solution first time round.

      That has not really answered your question, but I do believe that the prospect of surgery, especially when the patient is involved in the process, can cause a lot of anxiety beforehand;  but that anxiety invariably melts away after the procedure has been done.   If it were some kind of emergency or malignant growth involved, the decision would be far more straightforward.   But the surgeons do not recommend procedures that do not have a good prospect of helping your quality of life.

       

  • R2351
    R2351 s091a

    Posted

    Hello Sonia,

    Look up my posts. It might help you with what you're going through.

    If you have any qustions I'm here to help.

    Hope you're doing better,

    God Bless,

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