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Recurrence of Achalasia after Heller Myotomy

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gallopinglawyer
gallopinglawyer

Hi

I'm now 38 and was diagnosed with achalasia in 1998. The condition stated in late 1997 and progressed very quickly. I was unable to eat any form of solid food and every meal had to be accompanied by buckets of water!

I had the myotomy and a fundoplication in Sept 1999.

However, the symptoms soon returned. They never got as bad as they were before the operation, but I think suffers of the condition become very adept at managing the condition.

I went through a series of dilations and other tests until, in 2005, my surgeon decided that another operation was the only hope. However, by this time, I had completely lost confidence in my surgeon and decided to live with the condition.

I have found that swallowing has continued to get worse over the years, but I manage it reasonably well by drinking lots of water with meals and avoiding problematic foods such as bread, pasta and fruit.

However, I suffer from dreadful substernal pain and have been admitted twice to A&E with a suspected heart attack. My use of painkillers is now at pretty serious levels so I am having the condition investigated again.

I guess that I knew this was inevitable, but I'm not looking forward to the barium swallows, endoscopy, manometry etc and I guess further surgery is unavoidable.

I utterly sympathise with those who have the condition. It is painful, restricting and embarrassing - you only have to regurgitate an oesophagus full of chewed food over a plate to realise what a bummer of a condition this is. It may not be life threatening, but it is certainly not fun!

I wish everyone with the condition every best wish in managing their condition.

PS - I really struggle with my weight and am now 5 stone overweight which must be a record for achalasia!!! Would love to hear from anyone in a similar position.

8 likes, 120 replies

120 Replies

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  • GlamC
    GlamC gallopinglawyer

    Posted

    I had a Hellers op in my early 30s (about 1982). I was fine after apart from reflux especially at night. Symptoms have been returning over the last 2 years and I am having frequent episodes of acute muscle spasm when even fluids do not go down. The usual suspects like meat, bread, pasta can all cause problems to start but sometimes it can come out of nowhere. Cold drinks can also cause problems.

    I always have room temperature water to help at mealtimes. My social life is becoming stressful as I worry so much about eating in public.

    I have tried with Botox injections which did not help. My Ba swallow only showed slightly delayed emptying into the stomach.

    The only relief I can get when in spasm is to manage it by vomiting.

    Does anyone know of anything which might help. I am reluctant to have dilatation as I had an old style myotomy with no wrap around.

     

    • AlanJM
      AlanJM GlamC

      Posted

      I think you have to return to the specialist surgeon to review where you are with it.   It is possible that something like buscopan may help with the spasms.   If you are available, there is a session about Achalasia and food on Wednesday 8 July at 5.30pm that you can RSVP to through the Achalasia Meet Up group (google)
    • GlamC
      GlamC AlanJM

      Posted

      Thank you for replying. The surgeon died some time ago and I live in a different area now. The gastroenterologist I saw recently had little to offer. I will be away for this meeting but will keep an eye on the website.
    • AlanJM
      AlanJM GlamC

      Posted

      The notes of the meeting in Jult 2015 are niw on the website of the Oesophageal Patients Association under The Oesophagus - Achalasia
    • marilyn19717
      marilyn19717 GlamC

      Posted

      Hi my symptoms are almost the same as yours. Old style myotomy in 1981 and returning symptoms over last 2yrs. I have recently had a set of three balloon dilations which have helped greatly. Eating well on 15mg of lansoprazole daily.Only get odd problem with reflux now causing cough and tight throat.
    • Elkaa
      Elkaa AlanJM

      Posted

      Where is the group located? Ty
  • valerie97984
    valerie97984 gallopinglawyer

    Posted

    Hello,

    I have a question but need to explain the situation first. I am a female age 39. I was diagnosed with Achalasia in 1999, I had a scope with mild dilitation which did not help at all. I had all the usual symptoms weight loss, regurgitation, difficulty swallowing all forms of food and liquid. In 2000 I had a Heller Myotomy with fundiplication, it provided a significant amount of relief (not complete but very good) for about 5 years. I then started having more and more trouble. I increased my water intake during meals (was already using quite a bit) to help push the food down. I also started having the spasms, pain, and burning sensation. Went back to the GI doctor and statrted taking muscle relaxers and pain killers during an attack only to relieve the stress and pain. After sleeping I would usually wake up feeling like my normal self. At about the 10 year mark post Heller Myotomy I started having more difficulty eating and substernal chest pain that radiated to jaw and arm. I also ended up in the clinic a couple times thinking it was a heart attack. I have never thrown up or regurgitated since my Myotomy, more than 15 years. I have had a pneumatic dilitation and botox injection with no real relief of symptoms. In the last six months things have gotten substantially worse and I went in for my routine once a year endoscopy. They found I had a horrible infection in my esophagus along with several errosions and ulcers. They say this is from the food sitting too long in my esophagus. I was refered to a surgeon. The surgeon said I need another sugery. He said a repeat Heller Myotomy was not a good idea. The risks vs the benefits a second time around are not good. He recomended an esophagectomy. This is a major surgery with permanent side effects. The sugeon says my life should actually improve because many of the side effects I already deal with. 

    Okay so after all that my question is, Has anybody had a second myotomy or esophagectomy? Results pros and cons? Any input is appreciated and any questions are welcome.

    • AlanJM
      AlanJM valerie97984

      Posted

      I know lots of people who have had an oesophagectomy - the main source would be the patient support meetings held by the Oesophageal Patients Association.  90% of their surgery is concerned with cancer but there are others who have had it because of other reasons such as achalasia.

      The danger is from the damage to your oesophagus.   What kind of infection is it, I wonder?  Is it candiasis / thrush?  Some erosions and ulcers might heal, but it sounds like yours may not heal naturally.   The surgeon would not recommend an oesophagectomy without good reason, and I suspect that the main issue is whether this difficult condition that you have can in fact be cured without surgery.   Have they done biopsies?   If you have high grade dysplasia (pre-cancerous) there would be no question that you should have the surgery, but this arises usually from Barrett's Oesophagus and years of being exposed to stomach acid.

      The main long term effects after oesophagectomy are concerned with coping with a shortened digestion system, acid reflux (because there is no longer a sphincter valve in place between stomach and oesophagus) and insulin spikes, but these are not an inevitable result and many people do not suffer unduly once they learn how to eat 'little and often' ands to avoid certain foods that give trouble.    But it is major surgery that takes a long time to recover from because your stomach gets raised into your chest, amongst other things.  

      I do not think the problems after an oesophagectomy are generally any worse than what you have to put up with.    All I would say is that you should ensure that you are treated by an experienced Upper GI surgeon at one of the specialist centres.   If you are able to send a message direct I may be able to help with this, but the most experienced people include:   Prof Bob Mason at St Thomas';  Prof George Hanna at St Mary's Paddington; Prof Mike Griffin at Newcastle;  Liverpool Heart & Chest hospital, and so on.

       

    • valerie97984
      valerie97984 AlanJM

      Posted

      Yes, I have had biopsies at several points in time. They have never showed Barret's or cancer. The infection was a type of yeast but did not culture positive for candiasis. I took anti fungal meds for 21 days. I am on nexium to help with the erosions. I have also had a Bravo capsual to gauge the stomach acid and it came back negative. I have never had a problem with reflux before or after my sugery. I have been seeking out the most experienced surgeons around and have no problem traveling, but from the sounds of it you may be just a little too far, UK? I live in the states, but thanks. By the way the small meals often would be nothing new for me this is how I eat already. I kinda thought most people with achalasia ate this way. 
    • AlanJM
      AlanJM valerie97984

      Posted

      Yes, I think you are right about eating little and often.   As far as I am aware, USC Tom DeMeester’s old department. UCSF Pelligrini's old dept. Marco Patti, Jeff Peters in Rochester are good places to be seen in USA.
    • Elkaa
      Elkaa valerie97984

      Posted

      What did you do and how are you now? Have you considered the POEM?
    • michael93192
      michael93192 AlanJM

      Posted

      Got a myotomy from Dr. Patti at UCSF in 1999.

      Live in Oregon now, and I am getting Dysphasia again. How can I tell if it is cancer or recurrent achalasia?

    • AlanJM
      AlanJM michael93192

      Posted

      I do not think it is possible to tell as a patient.   You would need to go for an investigation, endoscopy etc.

      ​As far as I am aware the chances are against it being cancer, but it is always prudent to find out the underlying cause of the problem anyway, which could be  a number of things other than cancer.   I hope it goes well for you.

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