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New achalasia treatment

Posted , 6 users are following.

k84461
k84461

2 years ago i was told my achalasia was incurable and that they expect me to die within the next 10 years.

Last week i had my routine appointment brought forward because i have had pain in the oesophagus for 3 months and it hurts when i try to eat, laugh, and breath.

X-rays showed no problem so i am having a scan very soon.

My consultant has now told me there has been new treatment available in London the last year at Kings College and the UCLH.

He has referred me to see a specialist in London but i do not know what the treatment would be.

Has anyone else been seen at one of these hospitals for this new treatment and if so what can you tell me about it.

0 likes, 18 replies

18 Replies

  • AlanJM
    AlanJM k84461

    Posted

    It might be a good idea to download a copy of 'A Patient's Guide to Achalasia' from the website of the Oesophageal Patients Association (under The oesophagus and Achalasia).

    If you go to University College Hospital you may see Mr Majid Hashemi who collaborated in this guide.

    Probably the new treatment being referred to is POEM, a variation of a Heller's myotomy, which cuts the muscles clamping tight the lower oesophageal sphincter or other parts of the oesophagus, but this does not do anything significantly different in principle from more conventional surgery to relieve the tension, and it might be in some respects more likely to lead to reflux problems because POEM does not involve a fundoplication.

    It is a rare condition, and very rare indeed to die solely from achalasia.   The last option is normally the surgical removal of the oesophagus, which is serious surgery, but I know many people who have undergone this surgery and enjoy a reasonable quality of life.   One person had this surgery 45 years ago, for instance.

    POEM is also available at St Thomas' hospital in London (Mr Abrie Botha) and probably a fair number of other places as well.  

    You do need to be seen by an experienced Upper GI surgeon.   They are normally based at the centres that also undertake surgery for cancer.   The same surgeons  do the operations for malignant and benign conditions.  

     

    • k84461
      k84461 AlanJM

      Posted

      Thanks for replying Alan.

      My consultant did mention about 2 years ago that an option was to remove the oesophagus but he told me i would have a poor quality of life so i turned it down.

      He said he had a patient who died of cancer and i think he said that was oesophagul too.

      I have just emailed my consultant's secretary and asked her to find out what the treatment is i am going to be considered for so will let you know when she tells me.

    • k84461
      k84461 AlanJM

      Posted

      Hi again Alan

      It has been confirmed to me that it is indeed the POEM treatment that my consultant is hoping i may have.

      He is going to see a Ct scan in the meantime to see the condition of my internal body and it's scar tissue from all the previous treatments i have had and this information will be available on the computer to the consultant he is referring me to.

      Cheers...

    • AlanJM
      AlanJM k84461

      Posted

      I hope it goes well for you.

      Best Wishes

      Alan

  • neil32387
    neil32387 k84461

    Posted

    Hi k, 

    I hope you have found time to look at the other Achalasia threads on this forum. They are filled with insightful information; and messages by lots of caring folk...

    I wish you all the best in you above pursuit! 

    Healthiest wishes, 

    Neil  

    • k84461
      k84461 neil32387

      Posted

      Hi Neil

      I have been on this site for quite a while so have read many things on here thanks.

      Will keep you posted.

  • quantumq4
    quantumq4 k84461

    Posted

    I had POEM at UCLH 9 months ago.

    So far so good.

    It's still being done on a trial basis there (they'd only done about 30 before mine) but other hopsitals do it full time.

    I was in overnight and back on proper food after a week.

    • k84461
      k84461 quantumq4

      Posted

      Helpful to know thanks :-) 

      I wish you continued success.

  • araceli21227
    araceli21227 k84461

    Posted

    I'm new doing this I been having all kind the esophageal problems and Im schedule for achalasia surgery.

    did you had surgery?

    • k84461
      k84461 araceli21227

      Posted

      I had an op when i was a kid but it didn't cure me 100%. The problems got worse in my later life and i have been back under the care of the hospital for the last few years.

      A surgeon has point blank refused to give me an op because the risk of death is too high.

      This is partially due to the fact that keyhole surgery wasn't around when i had my op and they cannot do keyhole surgery this time around either.

      Good luck with your surgery and for a complete recovery after it.

    • AlanJM
      AlanJM k84461

      Posted

      Surgery that 'revises' earlier operations is always tricky, and there are usually only a few surgeons with the right experience and skill to undertake it.   They are quite right to be cautious, but it is a situation where a second opinion can be valuable.   I am sure you are right that the involvement of keyhole surgery is not all the story.

      The last resort is to remove the oesophagus surgically, and move your stomach so that it joins up with the stump of your oesophagus.   This sounds terribly serious, and it is major surgery that should never be undertaken lightly, but lots of people do have this operation, usually because of cancer, and enjoy a reasonably good quality of life afterwards.   As far as the risk of death from the operation is concerned, these operations are now performed in the UK by specialist Upper GI centres and they are generally safe.   Specialist surgeons have transformed the situation from a generation ago.

       

    • k84461
      k84461 AlanJM

      Posted

      Thanks for the insight Alan! A mate asked me how it would work if the stomach was removed and i didn't know.

       

    • AlanJM
      AlanJM k84461

      Posted

      There is some good information / factsheets etc on the website of the Oesophageal Patients Association who would be able to put you in touch with somebody who had had the operation if you feel the need.
    • k84461
      k84461 AlanJM

      Posted

      Hi everyone.

      I was told yesterday that i have lower oesophagul cancer and that it has been caught early.

      This means i will no longer be having the poem operation.

      I have been referred to a professor next week and will get biopsy results in about 3 weeks time.

       

    • AlanJM
      AlanJM k84461

      Posted

      I am sorry to hear your news, which has not doubt been a shock to you.   When caught early, as yours has been, the outcomes are very good.   If you have to have an oesophagectomy operation, it will remove the lower oesophageal sphincter that has probably been the cause of your problems.   Sometimes they can remove cancerous nodules with an endoscope rather than having to have the major surgery.

      You may find it helpful to contact the Oesophageal Patients Association (they have a website and a helpline 0121 704 9860) if you do need the surgery as there are many people who have had this operation and enjoy quite a good quality of life afterwards.   In the case of David Kirby, who founded the OPA, it was over 40 years ago, and he is still alive and well.

    • neil32387
      neil32387 k84461

      Posted

      Hi K*,

      Sorry to hear your news; and wishing good luck your way..My wife had  breast cancer a couple of years ago which was a revelation in terms of our perception of NHS care..If there are positives here one thing will be that your Drs/Advisors will now focus their attention which essentially will lead to a more proactive and diligent action plan for you.. Thus will likely lead to quicker symptom relief and a foundation for the future... 

      Warmest, Neil. 

    • k84461
      k84461 AlanJM

      Posted

      Interesting thanks Alan! Not a shock really because i knew you could get cancer from achalasia so was always prepared to get that diagnosis one day. 

      They have appointed me a sister who will be in touch for regular support and facts about my case.

      They will call me Friday with more news and i see my consultant then the surgeon next week.

      I will be in touch.

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