Achalasia and Heller Myotomy - do you know experts?

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Hi All, my 9 year old son has been diagnosed with oesophaeal Achalasia and yesterday after the endoscopy, a surgery seems to be the next step. We have been looked after a doctor in Bristol Children hospital and the paediatric surgeon who is going to do the heller Myotomy said based on the fact that this is a rare condition - especially in children - he has operated on 3 children so far and suggested that he either does the surgery with two of his paediatric colleagues for which he can potentally offer us a date in the next couple of months or the option would be to pull in a more experienced adult surgeon however the complications that come with this may delay the date to an unforseen future. there was no indication as to how long this delay might be and considering that after 2 years of chasing the doctors to get an appointment to check his condition, I was worried to miss the opportunity and agreed that he does the surgery. However knowing that it is very important to have an expert on board, I am now worrried even more that i may have done the wrong thing by 'rushing' into it and perhaps end up with complications afterwards. If anybosy has had experience and knows doctors who have performed this on children, please do let me know, I dont want my son suffer any longer and but then I dont want to cause him even more pain and longer term damage. please help! thank you!

 

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  • Posted

    Would it not be possible for them to offer your son a shot of botox to give him some relief whilst waiting for the expert.  I have the same condition and have just had another shot of botox it is like magic.  It is not a long term solution but I got 12 months out of the first lot of Botox I had and 16 months out of the second botox and have just had my third!  I personally am very reluctant to have the operation as I have read and read and done lots of research.  Good luck
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    • Posted

      Hi Tracy, thank you so much for your comment. The doctor doesn't seem to think highly of botox and referring to it as a very temporary solution and a relief of 3 to max 6 month. I am very reluctant about the surgery for myotomy but I wouldn't want him to go through botox treatment so often. 12 ,to 16 month sounds so much better though. I will explore this thanks a lot!.. The expert won't be doing the surgery but be there in theater to support I understand. Don't get me wrong the doctor seems to be an expert in his field as well but there simply doesn't seem to be many cases where children need this procedure in our area hence his lack of experience is how I understand it. And experience seems quite vital in this case..
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    • Posted

      Hello Tracy     I am 83 years old, I have had 4 botox injections and am waiting for my 5th. It realy does help, my relief last from 9mos. to 1 year. I have been told that the injections become less effective as time goes on, so far it hasen't happend to me. I am too old for surgery. good luck to you  and your son   Bill
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    • Posted

      Hello Tracy,

      I wish I could be more help when it came to the fact that your child is having trouble. I am 29 years old and had the poem procedure about 2 weeks ago. I have been diagnosed with Type 2 achalasia I live in the Boston Massachusetts area of the United States. I have lost a lot of weight and I've tried the Botox procedure it really only lasted me 2 to 3 months they say the younger you are the faster your body resists the Botox and in a 7 year old I can only imagine that it may not last as long as some of the other people that you received comments from. I am recovering well from the poem procedure and strongly suggest that you inquire about it many doctors here in the United States are familiar with this procedure and even if you have to take a little road trip for your child to feel better I think it would be worth it. I've been suffering with achalasia for well over 7 years and nobody truly understood what it was until I went to Boston they have many GI specialists who are familiar with this disease. Even if you were just to reach out to Massachusetts General Hospital to ask some questions and see if they can refer you to a doctor wherever you are that can help you.I couldn't imagine being 7 years old and suffering like I was. I pray you find your child help as soon as possible so that they can live a normal life. Im sorry you even have to deal with this.

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    • Posted

      Hi, thank you for your reply and for sharing your story.  However there is a little confusion it is not my child with Achalasia, it is me I am 46 yrs old and have had Achalasia for the past 7 years.  The botox has been very helpful to me and has lasted over a year every time.
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    • Posted

      sorry Tracy

      I look at these message boards on my phone and I never seem to reply to the appropriate person I'm just going to keep reading and stop trying to put in my two cents sorry about the confusion good luck with everything

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  • Posted

    I used a specliaist called Mr Jambulingham - although this was done privately, my aftercare has been on the NHS and I am still seeing ;him.  He is based in Luton, but at least he may know other specialists.  There is also a new procedure avaialbe that can be done instead of the Hellers, called POEM so you may wish to discuss this with your specialist.  
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    • Posted

      Hi

      I am currently seeing a specialist at a hospital in  Chelmsford , his name is Dr Sri Kadirkamanathan< he is supposed to be one of the best upper GI surgeons around < hopefully thats the case . I live in Luton .

      Have you had your procedure already 

      thanks John

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    • Posted

      Wow Jody seems like POEM is the surgery without incision to the body, thank you for sharing this info I wasn't aware. Also thanks for the ref to your doctor! Appreciated. Rgds sengul
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  • Posted

    Hi there, My daughter had a heller myotomy with partial fundoplication last year (my daughter is 7). It helped her enormously and although she still gets symptoms, she can now go to school and lead a much happier life. We live in Australia, so I can't help you out with specialists to see, but we wish you all the very best. It's such a difficult thing to see your child so sick. I really hope that you get a good result. Best wishes. P.S We have also found that sugar and fat cause alot of problems for our daughter. Changing to low fat low sugar has helped her to feel better.
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    • Posted

      Hi mum oh H, thank you so much for your comment, it really is hard to be helpless while he is suffering.. The low fat piece is easy to stick to but low sugar... A huge challenge! As he is constantly hungry he is craving sugar at all times and can't get enough of it. Understandably acidic or acid forming food is not helping.. Thanks a lot, glad to hear your daughter has had a successful procedure and can enjoy a better lifestyle. Rgds,sengul
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    • Posted

      Yes, it's dreadfully hard. My thoughts are with you and your situation. My daughter was constantly hungry too. We gave her alot of apple juice because she couldn't eat much at all and didn't have any energy. But after the operation she can eat quite a wide range of foods very well and has gained weight etc. While reducing the sugar is a challenge, we find it helps enormously. So she eats alot of low GI fruit, rice, (she can't eat dairy unfortunately), fish and unprocessed foods.We are certainly getting there, but some days are still difficult. Post operation, we have found she still needs domperidone to feel comfortable so there is no harm in asking your doctor about that. All the very best.
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  • Posted

    The doctor that I am seeing has a very good reputation with regards to this surgery , he has carried out 26 successful procedures to date , his name is Dr Sri Kadirkamanathan and he is based at the Springfield Hospital in Chelmsford .

    Thanks

    John

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    • Posted

      Thanks a lot john - I will check and perhaps he may have a pediatrician surgeon to refer in this area. Adult and children seem to be looked after different experts
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