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Recurrence of Achalasia after Heller Myotomy

Posted , 54 users are following.

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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  • alaa
    alaa

    Posted

    Hi

    im a 34 yr suffering from achalasia since 4 yrs and had my Hellers myotomy 2 yrs ago and similarly had no relief of symptoms and also use buckets of water to force food down.

    I was adviced to do ballon dilatation with the higher incidence of wall perforation and I'm really confused , will it cause relief or will it cause severe reflux or should I dump it all and live with it?

    • noel43619
      noel43619 alaa

      Posted

      Hello I'm a 43..year old that had the surgery just a year ago..it's been ok but I have been better understanding what actually happened to my esophagus..the nerves were destroyed enough to a point that I could not swallow and I'm left with a hole there to allow me to eat...when I eat too much...I get a pain in my chest..please explain wats going on so I can understand this...

    • AlanJM
      AlanJM noel43619

      Posted

      The food probably passes through into your stomach through gravity so you still have to be careful about eating.    You might try 'A Patient's Guide to Achalasia' that you can download from the website of the Oesophageal Patients Association under The Oesophagus.    It is probably a spasm caused by the nerve system.

  • licklerotti
    licklerotti

    Posted

    Hi there

    I had the Hellers procedure 9 years ago and the symptoms didn't ease. I was just as bad afterwards as I was before.

    In the end I was referred to a gastro specialist at another hospital who performed a balloon dilatation and this worked on the first attempt.

    Even though I have to have an endoscopy every year to monitor the width of my gullet I would highly recommend this procedure. The night after I had it done I ate a Roast Chicken dinner...the first meal I had had in 3 years!!!

    There is a higher risk of perforation however I have never suffered this from having a balloon dilatation...I did suffer a very bad perforation following the Hellers procedure!!!

    I do suffer from increased heartburn and reflux however this is easily manageable.

    Hope this helps

    Julie x

  • northeast96
    northeast96

    Posted

    Good morning

    I had a very successful Heller's myotomy (without fundoplication) 2-1/2 months ago. My surgeon does not believe in the fundoplication as you are closing what you have already opened and his method certainly worked for me. I can eat and drink anything I want and I stopped taking the ppi 2 weeks ago with no acid problems. I can only advise you all to go to Newcastle for any surgery.

    Best of luck to all with this dreadful, dreadful complaint.

    Jean

  • alaa
    alaa

    Posted

    Hi Jean

    i believe that you have just mentioned a very good point there that i would like to emphasize for everyone out there still sufferring from dysphagia post myotomy or is schedualed for this op ; that is the [b:28a13854ef]funduplication part [/b:28a13854ef]of the op ... i think that this procedure should be overviewed by surjeons treating achalasia coz it seems that this was originally designed to treat patients with lone reflux disease and not to be done to a patient with an already weakened eosophageal peristaltic activity!!?

    So i do really think that i have fallen victim for this funduplication policy and i have discussed this with a french surgeon who also believes that when treating achalasia do myotomy alone .. by the way he adviced me to do a trial of balloon dilatation with high risk of perforation that i think i will have to take.

  • seankp
    seankp gallopinglawyer

    Posted

    Hi everyone.

    My Name is Sean, I'm 44 and live in Littlehampton West Sussex.

    after nearly four years of tests in both Worthing and Brighton hospitals and staying in for a few weeks at a time I'm still at my wits end. This has realy taken its toll on my family's and my life. Going from a 200mph 13 stone well built super fit father to two young girls and wanting get married to my amazing girlfriend, I'm now 9.3 stone weedy looking and have zero energy to do anything.

    it started when my brother and i went on our twice a year trip to brands hatch to watch  motorcycle racing, you know caravan BBQ and a few beers, well on the second day we started the BBQ and I couldn't eat anything ! I normally eat a lot and finish off others food licking plates along the way. So anyway I started a can of larger and couldn't drink it, I thought I may just Be blocked up from the night before, well I couldn't drink that, and my brother said there's something really wrong with you, knowing how much I could eat I thought he may be right, next day the same, and then started being sick but not food just what looked like thick spit.

    after going to the doctors and having loads of blood tests taking nearly a two years I was admitted to hospital, I was told I had celiac disease, so had to change my diet and then started to loose a lot of weight. I was even told this could be in my head, at this point my very shy quiet girlfriend went mad at the doctor/surgeon. Well fast forward a year, the doctors got it wrong and I didn't have celiac disease at all, the cost to our family food wise was not something I want to think about as I got no help at all.

    i then had three endoscopys with them taking samples top and bottom, barum meal tests in Worthing and Brighton hospitals and nearly having to spend Christmas in Brighton,pleading with them so I could see my little girls on Christmas morning.

    i then got told a had achalasia, that was a blow as I mentioned this years ago to my doctor. Fast forward an other year I had the ballon widening, and hell that realy hurt, I was good for a few days but soon started being sick again, so I was seen by a new surgeon and he said that I would need more tests. After my second pressure test i was found that my muscles that pass food to my stomach have stoped working and the muscle that opens to let food in( can't remember the name) is closed all the time.

    i was then booked in for a heller myotomy on 1st may 2014, all went well till the surgeon came round and told me I will need to eat sloppy food again for month, well two weeks after my opp iv started being sick again. So it looks like it hasn't worked, I'm normally a really happy go lucky person and if wasn't for the love of my wife to be and my little girls god only knows cos I feel so down with no way to turn, I booked a two weeks holiday to swim with dolphins for my girls hoping I may eat normally as told by the surgeon but now I face going still the same four years on. I don't want other people to suffer like me and my family have, I don't know about you but after hearing my daughters asking Father Christmas to make there dad better and writing him letters it really gets to you.

    to be fare I'm keeping my chin up for my kids and wife to be, so I'm going to keep fighting the NHS in this, I hope anyone who reads this will do the same, it's your life.

    • heidi70033
      heidi70033 seankp

      Posted

      Hi Sean,

      I'm not from the UK, from the US but our stories are so similar.  That and you posted just 7 days ago!  I am a 42 year old mother of 4. I have had trouble swallowing for about 3 years.  I've had botox, dialations, and just had my myotomy on May 20th 2014.  It worked for 3 days, now I am back to how it was before.  I try not to get down, but it is a life changer.  It's hard to socialize or sit down for a family dinner w/o running to the sink to regurgitate.  I don't know where to go from here.  I have to go back for a follow up on June 20th.  This is my second doctor I have seen.  I hate to start "new" at a 3rd doctor.  My youngest had to get up in class and tell them if he had a wish what would he wish for, he said I wish my mom could swallow and not throw up.  I'm sure his teacher thinks I have some sort of eating disorder nowsmile  All that I can say is, I am glad I have it and not one of my kids because I can see how hard it is for my husband and them to watch me go through this, but I can't imagine living like this for the rest of my life! What's upsetting to me is that most people have never heard of this so I get a lot of adivse to eat slower, drink smoothies, or they wonder why I can eat rice pudding and not yogurt, like we have a choice as to what actually works for us.  Good luck to you!

    • seankp
      seankp heidi70033

      Posted

      Many thanks for your message it means a lot to here from you, it's so annoying as all the eating pleasures have since dissapeared , I like you have children and they love a Sunday roast dinner and I love cooking, I like to share the house chores as it's not far the lady of the house does everything, I really go all out to make the dinners look and taste out of this world, but it can't eat any of my hard work. Iv had to swap job rolls with my partner, she now goes out to work, while I take on the house hold details, to be fare on you women it's really hard and the once a year Mother's Day is not enough, you realy are all super humans, us men have or had I easy, wake up get dressed goto work come home eat sleep, start again and at the end of the month pay the bills. But you hard as nails women just crack on , so I'm happy in a way that I'm experiencing the the ups and downs of house husband, mother, father, cook, cleaner, shopper, taxi driver and everything, but to do this with no energy is one of the hardest things iv ever done, but as you say, I would rather have this condition than one of my girls as they are the blood in my vains and there smiles and laughter is what keeps me going. I hope we all find a solution to the condition soon for the love of our children need us., I wish you and your family all the luck in the world. It would be nice to here about any updates, kind regards Sean.
    • gypsarella
      gypsarella seankp

      Posted

      Hello, I'm new here.  I've just had my Heller Myotomy 6 days ago at the Mayo Clinicthat thankfully, is near our home in Scottsdale Arizona in the USA.  I was fine until I had a lapband inserted in Mexico 13 years ago.  First,they weren't legal here yet, second, even when they were it cost 3x as much and I would have had to gain weight to make my BMI high enough.  I loved it and lost 80 pounds...50 of it the first year.  It worked as it should for about three years.  Every time I ate more than, say, 4 oz, the food came back up as a lesson for me.  But after more time passed my pouch lost elasticity and allowed more food.  It started piling up into my esophagus and as my Mexican surgeon put it "acting like a stomach."  The first few years I traveled back to Mexico for free fills (adjustments) and flueroscopies to be sure all was well and the right amount of fluid was in the band.  After 9/11 the borders closed and you needed a passport to travel there.  My back also began having issues that caused a lot of pain, I had to get hip replacements, and I developed an oxygen saturation problem which nobody can solve up to now.  Lungs and heart are fine...I just desaturate and need extra oxygen when I'm up in altitude or walking, or talking for a while.  So the trips were over.  I found a Nurse Practitioner locally who had been trained to give band adjustments for a price, but she did not have a Flueroscopy machine to check appropriate fill amounts and just figured if afterward we can get water down, we were fine.  Apparently, I was not.  All that storage and pressure on that muscle between the stomach and esophagus destroyed my peristalsis and killed the muscle.  I had a ridiculous amount of GERD because nothing stopped anything I ate of drank to zoom right back up.  Because of my breathing and back issues, I could not just bop around like a healthy person and pretty much had/have to sit or lie down.  (I'm over 50). All the coughing took a toll on my esophagus and tore up my throat and I became hoarse all the time. I spent years being miserable while going doctor to doctor.  I'm so very lucky my husband loves me, our son is grown and on his own so he didn't have to witness this daily, and I have excellent health benefits. I had my band removed.  Then went through all the usual unpleasant testing.  I had a dialation and botox injection.  No real results.  Finally had this surgery plus they formed a new muscle to keep gastric contents down.  Within 2 days my voice became clearer and stronger.  My food doesn't come up anymore!  But I still have a clear mucous which causes coughing from Asthma.  But my coughing doesn't feel as painful or as often, and I don't wake at night coughing. I am on liquids and soft food.  Also, no Diet Coke which I really miss.  I had a lot of gas pumped into me for the laproscopic surgery and was also quite constipated until today. (YAY!) due to the pain medication.  I must strengthen my muscles because all that bloating made me feel and look 6 months pregnant!  I'm just trying to be up and puttering around the house as much as possible becaue of back issues that will not allow me to use treadmill.   I do get injections and ablations for that, but that is for another topic!  At this stage because of not having peristalsis, I am left with my evening meal hanging around in my throat for several hours, especially because I recline and sit in the evening due to pain.  I'm wondering how others with this same surgery are managing without peristalsis, which can never be brought back?  I am eating pasta, scrambled eggs, mashed (boiled) broccoli or cauliflower, mashed potatoes, very crumbled ground beef and soft fish.  Have to stay away from ice cream because of the high sugar content so also have frozen fruit bars with no added sugar.  I am having an issue with elevated glucose, also.  What a surprise!  In AZ it's over 100 degrees now.  I'll be on this diet for a  month until my follow up appointment.  Yearning for a burger and onion rings!
    • Mrstru14
      Mrstru14 seankp

      Posted

      I could have wrote this! Such similarities!

      How are you doing now?

      I had my Heller myotomy at QA Portsmouth.

      Highly recommend my surgeon Mr Toh.

      I'm celebrating 2.5 years post surgery with no recurring symptoms

    • faith50
      faith50 Mrstru14

      Posted

      Mrstru14, I am so happy to see your post my husband has achalasia diagnosed about a month ago next week he is having the heller myotomy surgery. He has been unable to eat solid foods since he has been diagnosed and has lost over 25 pounds he was thin to begin with. Everyone is saying that the surgery did not work for them I am very glad to see it worked for you, that gives me hope. I pray it works for my husband.
    • AlanJM
      AlanJM faith50

      Posted

      When you visit sites like this, it is easy to think that complucations must be the norm.   But 85%+ of patients do benefit from the surgery, and there is avoid reason to think that your husband's outcome will be positive.

      ?Even after surgery, though, he may well have to be careful about what he eats and to try to relax around food.

    • amreen85989
      amreen85989 faith50

      Posted

      Hey Faith,

      Hope your husband is doing well now. My mother has been suffering from Alchalasia Cardia and you can understand how difficult a phase it would have been for me as a daughter. Her surgeons are considering for a Heller's Myotomy. But after reading so many conditions here on this platform where it didn't work, I am not sure about it. Did you get the surgery done for your husband? Is it helpful for him?

      Please advise!

    • ducky1
      ducky1 amreen85989

      Posted

      Hi I just wanted to say that there are many of us on here that have had the hellers myotomy and it has been a success as far as can possibly be.

      Obviously surgery is not a cure but I don't regret having the surgery at all. I am 6 years on from my surgery and still going well.

    • AlanJM
      AlanJM amreen85989

      Posted

      I think that the figure is around 85-90% of patients who have the surgery at experienced centres have positive improvements.   But it does sound a daunting prospect to many people, which I completely understand.   It is probably part and parcel for these forums that there are more contributions from those for whom something has gone wrong rather than from those who have had the surgery, successfully, and do not feel any need to ask for help from a forum.   Good surgeons will assess each patient carefully and try and maximise the chances of a good outcome.

      The options do start to get limited if the condition gets serious and there is no treatment.

    • faith50
      faith50 amreen85989

      Posted

      Hi amreen85989,

      Yes, my husband did have the surgery and it went great! Recovery time was not long either.  And, he has put all his weight back on. I am so glad we decided to go through with it. Best of luck with your mom.

    • amreen85989
      amreen85989 faith50

      Posted

      Dear Faith,

      Your message comes as a breath of relief!

      Thank you for reverting.

      Regards,

      Amreen

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