Recurrence of Achalasia after Heller Myotomy
Posted , 54 users are following.
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
kris_31222 gallopinglawyer
Posted
I'm currently 35 years old and 18 years ago when I was 17 or 18 years old I was diagnosed with achalasia of the esophagus after losing nearly 25 lbs. and visiting numerous specialist. I'm from Northern California and after a final referral to a gastroenterologist at UC Davis I began undergoing treatments starting with baloon dialations and eventually a round of Botox injections. At the time I was young and noticed relief and an ease in swallowing for a short time after the procedures. I have was prescribed procardia and prior to meals would puncture the pill and place it under my tongue. I guess I just learned to cope with. Learning what I could and couldn't get down. Chewing more and basically drinking large amounts of fluid to force my meals down after eating. Yes I hardly ate when in public or with new people because the anxiety of not knowing when my meal was just going to come back up left me feeling awkward in social environments. The only option at the time was to go ahead with the corrective surgery. Me being young and scared and not necessarily wanting a huge vertical scar up my abdomen I chose to just continue to cope with and only on certain occasions maybe once a week would I find myself actually regurgitating my meals. But I suffered a lot at nights. I slept elevated to prevent saliva from choking and slit of time feeling the discomfort of being "full" while still being hungry. The feeling of like a ball in the back of my throat before I could get my meals down immediately becoming full. I found they stress played a huge part. Whenever under pressure or stressed out I would have trouble getting things down or when they did pass through the restriction I would suffer severe pain in my lower esophagus. I had problems gaining any weight and being over 6 ft tall I struggled to keep my weight above 150. As years progresses I started noticing how much energy I was consuming trying to get meals down and I started feeling weak and tired a lot. About 5 months ago I ended up in the hospital feeling extremely weak unable to stand up straight without shortness of breath and becoming lightheaded. In the ER I was diagnosed with extreme Iron deficiency anemia. I received 6 units of blood and was told I was lucky I was still alive. After explaining I had not expierencecd any trauma and could not explain where all my blood had gone. Numerous test were run and it was finally determined that the whole of my upper stomach or lower esophagus were lined with ulcers and because my inabilty to get food down my body wasn't getting the proper nutrients for my body to create blood. Again I was referred to numerous specialist ending up at UC San Francisco when's I met with specialist and have scheduled my non invasive heller myotomy for the 5th of Oct. I'm nervous because of the length of time I've had this Desiese the more callous and difficult the procedure may be And the discussion of possibly having to reconstruct part of my esophagus from the lining of my stomach. My advise to anyone suffering from this is to surgically correct it asap. The awkward uneasiness, anxiety, pain and stress I've suffered for 18 years has been unbareable at times. Please keep me in prayers and wish me luck. The thought of just eating without having to go through all the difficulties boggles my mind. I hope everything goes well and my procedure is 100% sucessful.
AlanJM kris_31222
Posted
marjorie_00914 kris_31222
Posted
I suffered from Achalasia for 10 years before it was diagnosed. It was hell and eventually I could not swallow anything, even water. I was starving to death. I started to research online and discovered Heller Myotomy. My specialist agreed to find a surgeon and I had to go to Saskatoon, Saskatchewan, Canada for the surgery. She was a wonderful doctor and when she saw how ill I was, she scheduled surgery immediately. The one thing she stressed is that she prefers not to do fundoplication as recurring problems after the surgery are often because of that. I did not have it done and I have had an amazing recovery. I had the surgery in March, 2010. Once in awhile I suffered chest pain and sometimes I had trouble swallowing certain foods. I had to learn not to eat too fast sometimes. Mostly these things occurred when I was under stress. In the last two years I have improved greatly and am at a point now where I forget I even had Achalasia. I very seldom even get any heartburn and if I do, I take a bit of Baking Soda in water.
I will add that my faith has a lot to do with it and I speak over my esophagus daily that it is healed and restored in the name of Jesus. I pray that all of you who are looking at this surgery, will have a very good outcome!
sheila_96975 kris_31222
Posted
I pray your procedure goes well...I dealt with mine for 2years so I feel your pain...and yes it's worse with anxiety..you might as well not eat if you get anxious...protein shakes were my meals many a day...and anytime I ate after 6pm I would aspirated when trying to sleep...I also did frequent dental care because I didn't want acid to mess my teeth up...so far they are in great shspe
michael93192 kris_31222
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Now in 2018, my symptoms are returning big time.
Hope it is not cancer.
sheila_96975 gallopinglawyer
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AlanJM sheila_96975
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cathy35794 gallopinglawyer
Posted
I don't have any answers , but my mother suffered from it from the time I can first remember until she died at age 82. She had all those things you talked about. I was on the journey with her from age 12 until she died in 2004. What causes this? She was treated with something called donnatal your many years, but in 1977 she had her first surgery. She has passed and I long ago closed the book, but I wondered when I saw to topic on this site. I wish you well and will pray for you cause I know your pain only too well
marjorie_00914 cathy35794
Posted
I was told that this disease attacks only 1 in 100,000 people. Someone told me recently that statistics are 1 in 200,000. I have to explain to medical professionals all the time, what it is and what I experienced. I was the first person to have Heller Myotomy in the hospital where I was scheduled. My night nurse told me she had to google my condition in order to properly take care of me. It does not matter who I would talk to, nobody truly understood what I was experiencing. When I experienced pain and couldn't swallow, people would suggest washing the food down with water or hot tea. They meant well, but could not comprehend that I couldn't swallow liquid either. The surgery helped me greatly. The one thing I would not allow myself to do was to let fear of the disease consume me and I would not accept that it was incurable. I prayed and sought God for answers every day. I learned about Divine healing and how Jesus took sickness on His own body and He said we don't have to bear it. I spoke healing over my body continuously. What is impossible with man, is possible with God! I no longer suffer from the disease. It almost took my life, but Jesus rescued me! Don't give up!
kris_31222 marjorie_00914
Posted
Yes I have accepted myself as being healed in Jesus's name. And I believe that in my heart. The Bible tells us to believe that we have received out healing, trust and know in your heart that if it's Gods will, then it will be done . Thanks for you prayers. It's very hard to have someone understand first hand the struggles and hardship that this condition has inflicted on my life. I wouldn't wish this on anyone. Something that normal people don't even think about is such a daunting task. I will never take it for granted.
AlanJM marjorie_00914
Posted
All these figures are subject to estimates, how many people are properly diagnosed and how well records are kept. But the bottom line is that the condition is rare, and being rare means that you are fortunate if you come across a GP who is familiar with it.
marjorie_00914
Posted
Hi Kris, just another word of encouragement. In Isaiah and again in Mathew, it says that Jesus took our sickness on His own body on the cross and He says that we don't have to bear it. By His stripes we ARE healed, just as our sins were taken care of, so was sickness. It is always God's will to heal. The Bible says that Jesus healed ALL who came to Him. If we are not sure that it is God's will, it is very hard to receive. God wants you healed! I stood on these Scriptures and spoke them out loud over my bodyfor the last three years and now I am reaping the benefits. God Bless You!
michael93192 marjorie_00914
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Come on.
cathy35794 gallopinglawyer
Posted
I may have some vague sx myself, but Mom's was very severe and she did suffer. I think God gave me some ability not to freak when everyone else did. It is like God would not let me crack even at a young age. Never had answers from anyone what caused it. The most helpful Doc was a Thomas Shanianan at the R.I Hospital in Providence R.I who I am sure is retired. He managed Mom from 1978 to her death in 2004. He was a saint. I got off track what I was wondering is Mom had to take iodine drops in milk at a young age for thyroid could that have caused damage to her throat? I know she was off thyroid treatment for most of her adult life and had some type of crisis in 1977 while I was away at school.The problem just always bamboozled me just curious after all these years.
marjorie_00914 cathy35794
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My poor mom used to wake me up and tell me that I was choking. It frightened her so much. She passed away the year before my surgery. I am so glad shse didn't have to see me wasting away that year. I tried for ten years to make a doctor understand that I didn't have acid reflux. The motility drugs always made me worse. I went to the doctor one day and I felt so weak and my voice was extremely hoarse and weak. It turned out I had aspirated in my sleep that night. This caused the doc to send me for another scope and that is when they first diagnosed Achalasia. It is a terrible time of suffering and my heart and prayers go out to each and every one of you.
AlanJM marjorie_00914
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michael93192 cathy35794
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