Recurrence of Achalasia after Heller Myotomy

Digestive health
1

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.

2

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?

3

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

4

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

5

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 funduplication part 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.

6

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.

7

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 now  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!

8

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.

9

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!

10

Well I'm from the US but symptoms of achalasia are the same no matter where you live. I was diagnosed a few years ago and trying to look on the bright side thought, well at least I won't gain wait like most do during menopause. In reality I would love to have to diet rather than fight this illness.

I can completely relate to the social emmarasment that this disease brings, you tend to isolate yourself rather than go out and burb & vomit and other such party tricks that this disease brings to eating.

i have been so blessed to have a tolerant husband. Years of sleeping next to a wife that up 4-5 times a night vomiting can not have been fun.

i just recently have had the heller myotomy with fundoplication and its too early to tell but I think it will really help with eating however, I am still having the awful painful espogeal spasms( mimicking heart attack pain chest radiating in jaw and arm).

If any of you have any suggestion on how to manage the spasms I would be forever grateful!

i have taken most meds, and they work but not for long. I will have a spasm and take meds, and 10 minutes later the pain has return. Looking for a long lasting medication and would love to avoid narcotics!

nice to know I'm not alone and I truly wish all the others best of health, especially to those people with young children. Just broke my heart reading that kids were writing father Xmas to help heal their father 

 

11

I am 31 years old, in the US....I have been dealing with all of my food and drink getting "stuck" since January of this year. I had my first endoscopy, with ballooning, in March, I had roughly five days relief. My doctor wanted me to wait two weeks, for everything to heal completely. So, then I had to have the barium swallow test. That showed that I have severe acid reflux with a delay in my esophagus emptying. From there I had another endoscopy with ballooning, with another five days of relief. Then, came the horrible esophageal manometry test. This is where my diagnosis of achalasia came from.  I have dealt with the horrid muscle spasms in my esophagus and the "choking" had progressively gotten worse and worse. This by far has been the worst disorder I have ever, ever had in my life. I had the lower heller myotomy with partial Toupet fundiplication surgery done 6 days ago. So far, I am miserable. I am a huge lover of food, and the liquid diet is one of the hardest things to stick with. I know this will pass and I will be able to slowly start trying more and more foods. The foods that I have eaten, have gone down better until today. I'm hoping it's all in my head and the swallowing will be better after I recover, rather than still have trouble with food going down and not get stuck. I hope I am a success after having the surgery, but I'm guessing only time will tell. 

12

Hi amorris-

I will share my recovery experiences with you so you will see a light at the end of the tunnel.

I just saw my surgeon for the follow up three weeks post-op.  Everything is fine and I'm cruising along as expected. Two weeks out and I was depressed because it was Saturday night and I wanted a burrito, chimichanga style, which means deep fried until crunchy.  I had a chicken instead of my usual steak.  I scooped small spoonfuls out of the soft insides that easily chewed to mush and broke apart to fit through the muscle that was still swollen.  Not a problem.  That was until I decided to tear up the crunchy outside into little pieces, which chewed well, went down fine.  At the end of the burrito shell was a nice crunchy bottom, where, I reasoned, I could chew it very much and enjoy the crispness.  I forgot that it had to be able to break apart into small pieces so as not to irritate the muscle.  YEOW!  I felt a large dull pain, and immediately afterward, a dull ache everytime I used my muscles to sit up or move.  I also had that sharp gas pain in my left shoulder that happens when food gets stuck. This went on for hours. Luckily I knew because I just had a workup with my cardiologist, that I was not having a heart attack.  I suggest anybody over, say 50, should have a cariology evaluation and tests to determine your heart health because it will SO give you peace of mind should this happen to you!  I put myself on soup and yogurt the next day and it finally felt fine. A few days ago I had a hissy fit because it was Saturday night and I wanted our usual take-out dinner, not creamed vegetables and mashed potatoes. So I sipped a Diet Coke through a straw.  Small sips. (Carbonation Probably added to my remaining gas from surgery but it was worth it to me)   So I slowly ate a slice of pizza.  I took small bites and chewed well.  I did the same with a couple honey bbq chicken wings and no problem.  But I must have been sleepwalking later because I apparently ate two more slices at midnight.  I felt the pressure as I swallowed and was awake alll night with coughing and left shoulder pain, meaning I had overstuffed myself and it was storing in my esophagus.  I know this because that is exactly how it felt when I  had the lapband and ate more than the pouch size.  (That is originally how I damaged my esophagus.)  I was surprised but happy that I experienced that pain because it is negative reinforcement on overeating!  THAT is the whole idea of the band!  Punishment for overeating.  If it doesn't come right up, it causes pain.  I was pretty swollen for two weeks, and I still feel a little swollen, but the surgeon said I will go down just a little more in the midline and the rest is me.  She said full recovery for this is 6-8 weeks, not 6 months as someone said on this forum somewhere. I am now released to swim, get on the treadmill as I can, and do what I want.  Hopefully with my back pain, I can start slowly on the treadmill and get in decent shape eventually. I would just say to you to remember to take in very small bites of foods that will break up on their own when the swollen muscle tries to squeeze shut.  The pain happens when there is too much and the muscle is irritated.

13

Thank you so much for your reassurance. I am at a week since surgery. I was suppose to wait until tomorrow (day 8) to start my soft food diet. I just couldn't wait that long...I have felt like I was starving. I have lost 6 pounds since my surgery, last Wednesday. So, today I have had mashed potatoes and gravy, dirty rice, a baked potato with butter & sour cream and a small bowl of chili. Everything has tasted AMAZING and has gone down with no problem. One thing that does bother me is sprite, coca cola doesn't do it as bad or sweet tea....so I guess I'll hold off on the sprite intake for a while. I am such a huge lover for food, so I am counting down the days until I can have pizza, hot wings, salad, tortilla chips and salsa, bread and my all time favorite for Mexican! I'm taking it slow, but I feel like I am never going to be able to enjoy my fave foods again. I know that probably sounds silly, but this surgery has been more trying, depressing and difficult than I expected. 

14

This reply is for amorris, despite what button was available for the reply.  It sounds as though you are advancing nicely.  My doc did caution me on plain bread, so I will relay what she said to you.  Toast would be better at this point.  Bread is spongy and can turn glue-like when mixed with saliva so hold off for about three weeks.  Also, I don't know about you but after years of coughing and damage from the gastric contents, my esophagus is damaged and I have been completely hoarse for about a year.  The hoarse voice improved greatly after surgery, and I was told it would heal to some extent, but we'd have to wait and see.  The problem is with very spicey foods.  BBQ sauce goes down well, but anything with cayenne pepper does not and sends me into spasms of coughing.  Any coughing defeats the purpose of the healing and may eventually leave permanent scarring.  I find cracker crumbs get into whatever cracks and crevices my esophagus now haves and causes huge amounts of coughing.  You have to experiment with what works for you, but I'd wait until 2 1/2-3 weeks just to be sure you won't be forcing your swollen muscle to fight with food that is too big, thereby irritating it and causing renewed swelling and you'll be back at week #1.  Good luck to you and keep posting.

15

Hi, im a 53 year old female diaganosed with type 3 achalasia .I also have problems with my weight ,and find dieting near impossible !!!! I am currently waiting for the operation any tips anyone . I try to keep up beat about the whole thing ,but I have to say it can be pretty miserable . But i will keep smiling 

 

16

Thank you for the tips gallopinglawyer I am a HUGE fan of any type of bread, but I can remember before the surgery that I had a harder time with bread because I could imagine it becoming sort of paper mâché type material in your esophagus, so, I have refrained from any type of bread as of yet. Today has been much better. I had a yummy dinner of mashed potatoes, macaroni, garden peas, green beans, and steamed cabbage. Everything went down well, but I think I have sort of experienced something similar to what you had the night you ate too much. I have been extremely bloated feeling and very uncomfortable, no pain, just the feeling of over eating. From now on, I will be sure to eat smaller amounts more often throughout the day. It's all a learning experience. I am feeling more "human" every day that passes. I'm slowly learning what is best for me and things that aren't so good. Thank you so much for all your tips and posts. It seems to help being able to relate with people who have the same disorder and have had the same surgery. 

17

Hi deborah07844. I hope you are having the surgery soon. I was very nervous to have the surgery, and the first few days after the fact, I honestly felt like I made a bad decision. But, as every day goes by, it does get easier and easier. I am a lover of food, so I would say the liquid diet was my toughest task. Be sure, not to drink any carbonated beverages. I am a sprite lover, and it is a definite no, no! You will experience gas bubbles like never before. So, I have transitioned to sweet tea. Much better. I have had no problem with my food going down or it getting "stuck". Which is a nice change. Keep your head up and know that you will get some relief once you have the surgery. I hope you have results as good as mine. Granted it has only been 8 days since my surgery, I can tell a huge difference....no regurgitation of food/liquid, no reflux/heartburn, no choking on food. 

18

Thank you , can I ask where you had you op done ? as not all surgeons have had experience . I am just grateful that I have gt a diagnosis , it all seems very difficult , is there a charity or organisation that helps people like you and I . Please keep getting better you honesty is very appreciated . Ive just been onto the hospital and its going to be a long wait . But hey ho 

19

Hey deborah07844. I'm not sure where you are located, but I'm in the states. I had my surgery done at N.C. Memorial Hospital. Have they told you when you will be having your surgery?

20

It is sometimes (perhaps often) the case that procedures do not work first time and for ever.   The important thing is to have the tests done, and I realise that this means repeat procedures for you, but the surgeons should be used to this happening; they do have further options like a fundoplication wrap.   I think you should seriously think about going back to them (or an alternative centre for specialist Upper GI surgery).   It is to do with muscles and the longer you leave things, the more your juscles will be trained out of doing their work for motility.