Achalasia - Help finding a surgeon

Posted , 6 users are following.

As an Achalasia sufferer can anyone recommend a hospital where there is a surgeon who has done plenty of Heller's operations etc for achalasia.

I live in Essex but would obviously be prepared to travel to London or elsewhere if I could have confidence in the surgeon.

Hope somebody can advise! Thank you.

0 likes, 11 replies

11 Replies

  • Posted

    Hello Gail

    I had the Heller's operation early this year and being unhappy with my treatment in my local area, opted to go to Newcastle, where the surgeon carried out the operation within a short period of my meeting him.

    I cannot speak highly enough of this gentleman. I take no medication now and can eat anything I wish. I saw the surgeon again last week for discharge and he told me if I have any problems whatsoever to contact him and he will see me immediately! I am not anticipating any problems but it is comforting to know someone is there for me if I do.

    I don't think I'm allowed to give his name on this site but if you email me personally I'll provide you with it. Although I think all members of the team are familiar with this procedure so I don't think you would be disappointed with any of them.

    Good luck!

    ****

    [color=orange:af9bf53494][i:af9bf53494][b:af9bf53494][size=9:af9bf53494](Sorry but Patient Admin have removed either a telephone number, an email address, a postal address and or web address, from this posting, as it is the policy of Patient UK not to publish these on this forum.)[/size:af9bf53494][/b:af9bf53494][/i:af9bf53494][/color:af9bf53494]

    [color=green:af9bf53494][i:af9bf53494][b:af9bf53494][size=9:af9bf53494](Sorry but Patient Admin have removed a Doctor, Consultant and or Hospital name from this posting, as it is the policy of Patient UK not to publish these on this forum.) [/size:af9bf53494][/b:af9bf53494][/i:af9bf53494][/color:af9bf53494]

  • Posted

    [quote:aeb25372b9=\"GailEssex\"]As an Achalasia sufferer can anyone recommend a hospital where there is a surgeon who has done plenty of Heller's operations etc for achalasia.

    I live in Essex but would obviously be prepared to travel to London or elsewhere if I could have confidence in the surgeon.

    Hope somebody can advise! Thank you.[/quote:aeb25372b9]

    Hi,I hope the following information will be useful.Firstly,I do not suffer from Achalasia,but my Daughter does.The problems first occurred way back in 2005,when she developed difficulty swallowng.This went on for some time,and various doctors failed to find a cause,despite Barium swallow tests etc.This then went on to being unable to eat properly,and later,frequent chest infections.

    We were getting really desperate,as all the doctor's were saying there was no physical cause,but we were seeing things differently,with her choking when eating food,and constantly needing a glass of water to hand.The doctor's then recommended that she should see a Psychiatrist,as it was probably a condition caused by anxiety.As we were now willing to try anything,we agreed.She saw the psychiatrist for app 3 months,without the slightest improvement.

    I would point out,that,all the above took place over app 1 year,and by this time she had learned to control the problem to some degree,and sometimes it would appear to go away for 3 months or more,but would always return.Over the next 4 years she saw various doctor's,and went for various tests,etc,but not one single Doctor,suggested,or recommended,that she see a specialist.

    I don't know if there is such a thing as fate,but in 2009 we moved to a different part of our borough,and had to register with a new doctor.The same situation carried on for several months,until one evening my wife took our daughter to our GP to get a course of antibiotics for a chest infection.She walked in and saw it was a strange doctor,and he immediately questioned the amount of antibiotics our daughter had been taking.He suggested she attend Hospital for tests.

    The really weird thing happened next,which was when my wife saw his name.It turned out he was only there that evening as a locum,but even more weird,was who he was.He was the son of our previous doctor,and we had never seen him in the 3 years we were with him.As a result of this fated meeting our daughter then attended ***************,and had various tests on her throat,including having a camera put down her throat.

    The doctor who did these tests could find nothing wrong,but insisted our daughter return to see a Gastrologist for further tests,and although he did not actually name the condition,he knew there was something not right,and she returned app 2 weeks later for the Gastrology app.This involved putting a bigger camera in to her stomach,and various other tests,and within a few days,we knew,at last,what was wrong.After 5 YEARS,a doctor,had finally found the cause of her problem,ACHALASIA.

    The next couple of weeks were amazing,and she was told the best solution for her was the Heller operation.She was actually booked in to have the operation 1 week later,but due to a chest infection it was cancelled,however the doctor arranged for her to come in again 6 weeks later,and it was carried out on the 13th of October by keyhole surgery.He also did another related operation at the same time.She was in hospital for app 5 days,and has already noticed a massive improvement.The scarring on her stomach is already fading,and will eventually be almost invisible.

    I can only say that the diagnosis and treatment were absolutely fantastic,and the surgeon is one of the few that can do this operation by keyhole surgery.I have not got his name to hand (it is one of those difficult to remember ones,but he is Asian) I would have absolutely no hesitation in recommending this surgeon.All I can remember at this time is that his name began with M,but it should not be a problem finding him.If you have a problem I will a

  • Posted

    I think I have this condition. I have been suffering with these symptoms for at least 15 years now I believe. It happens sontaneously and sometimes it can happen twice in a week and other times I can go months with nothing happening.

    What happens is I feel like something is stuck somewhere in my throat, maybe at the base of my neck just underneath my voicebox. A lot of the time I can take a big gulp of water and it "pushes" whatever is stuck down and I can carry on as normal. But sometimes that doesn't work and it feels as though whatever there is just won't budge. If I take big gulps of water if feels as though it's sitting on top of whatever is there and then it gets really painful if I try to hold the water down or try to swallow it. The pain spreads downwards towards my lungs and upwards towards my mouth. I just can't swallow or push anything down and if I've taken a gulp of water it inevitably comes back up. Sometimes I really have to cough and retch to push things out of my throat but that usually doesn't work and I just end up bringing up chewed food (sorry to be so graphic and disgusting but I'm hoping someone can relate to this!)

    A number of years ago I was put on acid reflux pills, that didn't work. I then went to an ENT specialist who did the Barium swallow test and an endoscopy, neither of which showed anything up. I was a lot younger at the time so when they told me there was nothing wrong and insinuated that I was making it up, I was quite embarrassed and never spoke to a doctor about it again because I really felt they didn't believe me.

    I don't know if it's gotten better in recent years or if I've learnt to manage it better by always having a glass of water to hand when I'm eating. But it can happen with anything - from a grape to a slice of roast beef. Sometimes when something is really stuck it can take hours for the sensation to pass.

    I just had an episode this evening and decided to Google it and came across Achalasia which seems to fit what I've been putting up with. Does anyone have any advice or any doctors they can put me in touch with who won't tell me it's psychosomatic or I'm making it up?

    Many thanks!

    • Posted

      For achalasia sufferers, the barium swallow test will almost certainly show the details of the swallowing mechanism to enable the diagnosis of achalsia to be made, so if the barium swaloow was negative, it makes it less likely that you have achalasia.   The regurgitation for achalasia is sometimes caused by the pressure of food inside the oesophagus, with the lower oesophageal sphincter being closed, thus forcing the upper oesophageal sphincter to open to release the pressure.   It is like vomiting but without involvement of the stomach itself.

      It does sound as if you have a 'bolus' sensation, and this may relate to the swallowing mechanism in your throat, and/or the nerves affecting and controlling the sensations for swallowing.

      It would obviously be best for you to achieve a diagnosis and if you have tried an ENT specialist without success, your next step would be to ask for a referral to a gastroenterologist.   I think a high resolution manometry test might be useful.   This measures the pressure at various points in your throat / oesophagus during the swallowing process and enables the doctors to analyse exactly where the problem is occurring.   It may be, for instance, that you have an issue towards the upper oesophageal sphincter rather than the more normal lower oesophageal sphincter for achalasia.   There are a variety of what the medics cll 'motility disorders' of which achalasia is just one.

      This is non-qualified speculation, by the way.

  • Posted

    Hi Gail,

    I have just been diagnosed with Achalasia and I too am now looking for an experienced surgeon. Have you any recommendations?

    Thanks.

    • Posted

      Hi Gary

      I had an excellant surgeon by the name of peter safranek

      who works privately and NHS.

      He is based at addenbrookes in cambridge for nhs patients.

      I can thoroughly recommend him if your gp can refer you to

      him.

      I even got the date for my operation on my first visit to see him

      which I was totally impressed with and the aftercare has been superb.

    • Posted

      Hi,

      Thanks very much for the information, it is appreciated.

    • Posted

      Generally, the specialist centres for Upper GI surgery are the best places.   A lot of their work will be cancer-related or bariatrics, but the surgeons will be the same.   So, I could add:  in London, University College hospital, St Mary's Paddington ( under Prof George Hanna), St Thomas (James Gossage), then Guildford, Nottingham (Ian Beckingham), Norwich, Newcastle (Prof Mike Griffin), South Wales (Geoff Clark), Glasgow (Matthew Forshaw).
    • Posted

      Do you know anything about the Mid-Essex Hospital Upper GI Unit? Apparently they have Robotic assisted Heller's Myotomy which allows for more accurate cutting of the fibres according to what I have read in some of the journels.

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