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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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  • gwen31356
    gwen31356 gallopinglawyer

    Posted

    Hi !! I'm Gwen !!!

    I understand your pain !! my first experience with Oesophageal Achalasia was in 1970, I was 15. No doctors could tell us what was the cause  of my vomiting every meal ,having to stand up to eat, drinking gallons of water or milk to try to keep something on my stomach. i vomited every meal ,everyday for 5 years  before someone realized my problem. i was told i had some type of spasm that caused this condition. They tried dilatation first. Worked for little while. I had major surgery in 1975 which lasted until 2010. I began to notice my food was getting stuck every now and then, i have had 4 or 5 dilatations, barium swallows, and endoscopy, I had Botox this year and it lasted a month. They are trying to find surgeon that excepts my insurance to do new procedure. When i first got this i lost lots of weight from 145 to 85 lbs. My Mom was so afraid for me. Now I am overweight by 30lbs. I have suffered this pain and agony a long time and I have gotten food stuck that I almost couldnt move. That is life-threatening !! This is a very uncomfortable illness. It causes heartburn,acid reflux and bloating. I don't know whats next, but I use my Nutri Bullet for most of my food. I pray we all find a procedure that will work. I am not looking forward to another major surgery eventhough the procedure will be much simpler now then it was in 1975. I have a very large scar,but I Thank GOD I am alive . Best Wishes to you ! Please keep me up to date & I will do the same!!!

  • meowspace
    meowspace gallopinglawyer

    Posted

    I was diagnosed with achalasia after 17 years of suffering, because doctors could not figure out what was wrong. My symptoms were different than most of yours. No difficulty swallowing. Instead,I would have a serious itch deep in my throat that left me coughing horrendously at night, and when I sat or stood in certain positions. For years I was diagnosed with GERD, asthma, allergies, none of which I actually had. I took GERD meds of all kinds that never worked. Inhalers. Alergy pills. Nothing worked to overcome the itching. I went to an ENT who looked down my throat and saw nothing unusual.

    Finally, a smart PCP sent me to a gastroenterologist whose specialty was doing GERD fundoplacations and achalasia Heller Myotemies. After a manometry that determined I had a floppy esophagus and NO Acid reflux (so it wasn't GERD), I was diagnosed with achalasia. Bits of food or liquid would creep back up to my throat and create the itch. I couldn't wash it down with water because the water would back up as well.

    My Heller Myotemy with Dor fundoplication was done in 2010, and the only time I would have a relapse would be if I overate or ate foods that irritated and swelled my sphincter. I stopped overeating, lost a ton of weight. Recently, I find that if I get a cold that goes into my chest, and it causes me to cough a lot, the cold will go away, but I am left with the itch for several weeks. The only way I can stop it is to eat foods that allow the swelling to go down, so I go decaf, no heavy spices, and no hard foods. Then I'm ok until the next cold. Unfortunately, I tend to forget what to do to around my food until It's gotten so bad again. Still, since the operation, I am infinitely better, even with relapses.

    I also try to avoid stress, and when I can't, I remind myself that God is walking me through whatever situation I'm dealing with, so I can relax and be guided. That helps. Getting enough sleep, too. I have what my wife calls my "mountain," which are a bunch of pillows situated just right to raise my head, shoulders and back comfortably.

    Anyway, thanks for all of your help. I appreciate knowing I'm not alone, but hope you all find answers to relieve your suffering. May this New Year bring miracles to us all!

    • AlanJM
      AlanJM meowspace

      Posted

      Thank you for sharing that experience.   I had not thought that it would have been a possibility, but when you explained it, it does sound very logical, and I am glad that you have benefitted from that treatment.
  • Pinkwarrior
    Pinkwarrior gallopinglawyer

    Posted

    I'm so happy that there is a forum to this thread! Firstly I would like to to say that I fee for everyone on this forum and sincerely hope a miracle occurs to all of you during your Achalasia. Wouldn't that be lovely!

    I am 21 years old and was diagnosed with Achalasia when I was 14 years old. I have had two balloon dilatations. The first relieving symptoms for 3 years and the second relieving symptoms for only one year.

    In December 2013, I had the Hellar Myotomy and Fundoplication. The specialists recommended this to be the best option to relieve symptoms if successful. It's 2016 now and since my surgery I have not had problems swallowing until the last few weeks. I can't help but feel extremely depressed and like all hope is lost. I first noticed swallowing problems when eating thicker / fluffier bread. Now when I swallow a tablet for reflux or pain medication, I notice that the liquids feels stuck too.

    I am in the process of seeing a new specialist due to the severe and chronic pain I deal with each day which occurred six months after my surgery and never ceased to go away. I'll have to begin organising to see specialists to have tests re done and see what's going on with my Achalasia.

    I truly wish this condition did not exist / or there was more knowledge about it and successful treatment options for us.

    • meowspace
      meowspace Pinkwarrior

      Posted

      So sorry You have to go through all this! Out of curiosity, is there a specific incident that you notice sets off the symptoms more than at other times? For instance, when I get a cold, though the cold goes away in two days, I end up with bronchitis. The bronchitis makes me cough, and the coughing irritates my esophagus, which seems to swell, and my symptoms (horrendous itching in my throat) start again. I have to give up caffeine, and start drinking chamomile tea (which is very good for the esophagus), and eventually it goes back to normal. Also cannot overeat or symptoms start again.

      Hope your problem is solved quickly and permanently.

    • Pinkwarrior
      Pinkwarrior meowspace

      Posted

      Thank you that's sweetl of you. I'm sorry you are going through this as well and I wish you all of the best and lots of relief.

      Yes! If I'm sick the symptoms are a lot worse in regards with pain. I haven't had trouble swallowing when I've been sick previously but the swallowing difficulties only started happening recently. Since the surgery I feel like my immune system is weaker and I stay sick for ages! A lot longer than pre op. Do you have this problem as well?

      Before the surgery I would have episodes of pain that would come and go but a few months after the surgery I developed a chronic pain which I really struggle with. I feel like it stops me from doing activities I would like to one day do such as dancing and yoga. It's also stopped me from being able to work. It's hard to research about achaslasia from the internet because you don't know what's false or true or what would work for us individually:

    • Pinkwarrior
      Pinkwarrior

      Posted

      Mango and green tea are suppose to be good for the esophagus too along with any fruits which aren't acidic (which could cause reflux) but I still don't find relief from pain by changing my diet.
    • meowspace
      meowspace Pinkwarrior

      Posted

      My immune system seems fine. Just the colds that lead to the bronchial stuff, leading to the rest.

      Achalasia is so rare that there doesn't seem to be a lot of research done on it. Lucky for me, I live in Oregon where there is a clinic with gastros who specialize in it.

  • melissa16903
    melissa16903 gallopinglawyer

    Posted

    Im going to be 40 in June, and Ive had achalasia since I was a little girl. When it first hit me, I lost so much weight my doctor thought I was bulemic. Ive since learned to deal with it, aftet a failed Myotomy, and I am overweight as well now. I believe it is due to our food sitting in our esophagus and not going into out stomachs, so we dont feel full. So we keep eating trying to get full, but it in actuality we are eating too much but dont realized it. My doctors were surprised that I was not underweight too.
    • AlanJM
      AlanJM melissa16903

      Posted

      It would be good to review your situation with a specialist. If you are absorbing nutrition sufficiently to be over-weight, that suggests some food is passing through to your stomach OK. But eating too rapidly / often would run the risk of your oesophagus becoming too 'baggy' and creating a big pouch below the lower oesophageal sphincter / entrance into your stomach. This would act as a reservoir for undigested, stale food, and would store up potential trouble. Eating small amounts and then leaving plenty of time between mouthfuls is something many people find helpful even if not what you would desire.
  • ella06819
    ella06819 gallopinglawyer

    Posted

    Hello! My name is Ella and I'm fourteen. I had the same problems and was diagnosed with achalasia. I had the surgery about a year ago and now my problems are almost entirely gone. I sympathise with you! I see that you posted this over a year ago. Do you still have problems or have you gotten it fixed?

  • natalie94320
    natalie94320 gallopinglawyer

    Posted

    Hiya i have this condition and wanted to know if you have had your second op?? I also have pains like heart attacks too, for hours the pain lasts sometimes, drinking milk for it to go. Sometimes it takes hours drinking milk and water for it to go too. I got sick all the time still too after my 1st op. Im scared to have a second op as i caught Phnumonia after my first op and was in hospital for nearly a month. I completely know what your going through.
    • AlanJM
      AlanJM natalie94320

      Posted

      It is natural to think back and be anxious if you have had a bad experience after surgery, but I think the chance of your contracting pneumonia again are very remote.   There is a very good chance that surgery can relieve your swallowing problems;  it is unlikely to get better without intervention, and will probably get worse, and your quality of life will be even worse than it is now.   There is a fair chamce that the surgery will also relieve your painful spasms but no guarantee.   Your anxiety and tension will tend to make the condition worse, and you could try some form of relaxation to improve things as this will probably reduce your problems and will benefit you regardless of any surgery you undergo.

      ​The surgery should not have resulted in you being like this, and they should have a chance to put things right. 

  • faith50
    faith50 gallopinglawyer

    Posted

    My husband has just been diagnosed with achalasia he has lost over 25 pounds and is going in for the hell are myopathy surgery next week. From what you're saying, can I expect this not to be then end of this problem?

    • natalie94320
      natalie94320 faith50

      Posted

      Hello faith, i got told by my surgeon that it isant curable, the op will ease things for a while but i still go sick alot after afew years after my op xx but everyone is different x
    • AlanJM
      AlanJM faith50

      Posted

      Statistically over 85% have significant benefits from this procedure. It reduces the muscle clamping shut the sphincter valve into the stomach, and that allows gravity to help the food go through, but you are right that it does not cure the underlying cause of the achalasia. Then the fundoplication wrap re-creates the valve effect to reduce reflux. It is possible that there is a relapse afterwards but this is not compulsory! You can help by trying to relax around food afterwards and avoiding food with difficult textures.
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