Recurrence of Achalasia after Heller Myotomy

Well first off, I'd like to mention I am 26 year old mother of one, and have had symptoms of this STUPID disease for seven years. For five of those years it was misdiagnosed as GERD. I had went in to the doctor because of the spasm pain, and they told me it was heartburn. I am due for my HM surgery in 2 weeks as I am starting my liquid diet tomorrow. 

I have been reading everyones testimonies, an have cried out of anger, and happiness. I even cried because I'm so happy that some of you can eat like normal people without throwing up. Really, I'm so happy for you all that have returned to a normal eating life. 

I have extremely bad Achalasia. My throat is so dilated that the dilation procedure will not be effective at all. I don't want to waste time trying botox, because I'm so tired of having this disease. I've thrown up in almost every single toilet of nearby restaurants and gas stations, and have had water come back up and splash me in the face and it's gotten in my mouth. I choke on my saliva, and when I eat it blocks my airway and I almost faint every time. 

After reading this page, I am no longer sure I want the procedure done because for most of you it hasn't worked. I'm underweight currently, and am not looking forward to losing even more weight because of this disease and surgery. I know no one with this disease and am so very lonely. 

I can't tell you all how "normal" I feel on this page. Those chest spasms the shoot up in my teeth/jaw, and arm are EXTREMELY hard to explain to someone who doesn't have Achalasia. It's immobilizing and happens often to me, and I chug gallons of water to make it go away. Having to constantly drink room temp water is becoming normal to me because I cannot drink ice cold water. It hurts me very much. 

Any light at the end of the tunnel stories will help. My son and husband deserve so much more, and I can tell it's taking so much time away from them constantly having to throw up. I don't know what to do now. 

I am SO SORRY to anyone who has this disease. I wouldn't wish this upon my worst enemy. I pray to God that one day we all will be able to eat normally again and not be embarrassed to eat out in public. Thank you so everyone for making me feel normal for the first time in almost a decade. 

I think that it is natural to wonder about the surgery in advance and I sympathise with Nowayitsray about this because the thought of surgery can be scary.   What I will say is that the medical literature indicates that in specialist experienced surgical centres there is significant benefit for 85-90%+ of patients who have a Heller's myotomy.   Asking at our patient group in London where there can be around 40 sufferers, there is virtually unanimous support for having gone through the surgery and the benefits that arise afterwards.   Having said that, it is not a magic wand to create a perfect digestive system.   You may well still have to be careful about some types of food, especially with a difficult texture or liability to congeal or if it is particularly spicy.   

?The spasms are often much improved, but the surgery does not guarantee freedom from spasms.   Sometimes they become less intense, or simply different.   It all depends on what triggers the spams in the first place, the reflux, interference with nerve system, or scarring from surgery.

?The other thing to think about is that the longer you leave it, the greater the risk that your oesophagus will have become so baggy that surgery becomes less likely to be effective.   And if you think of many years of life ahead, you might regret not having had the surgery at this stage.

?I think that, almost by definition, internet bulletin boards like this one tend to attract people who have problems and issues that they are worried about;  if your surgery has been successful you do not worry about this sort of thing.   So the good people who use this forum will likely not be representative of patients as a whole.

I have had achalasia for over 20 years now. I have had 2 laproscopic myotomy operations with fundoplication within the 1st 5 years of diagnosis. I still have a lot of extreme substernal pain which drinking tons of water usually but not always gets rid of it. I also have a lot of times where I wake up choking and cannot then get rid of the foul taste and odor in my throat and sinuses. Everyone I try to cough it up, it tastes so bad I can hardly stand it. I am back at the Dr. to try to find relief. My bed is elevated. I'm on omeprazole and ranitidine. My food goes down most of the time but I still have occasions where I have to stop and suffer through the food trying to push through. Sometimes it will not go through and I throw up. I also have severe headaches often lasting a week and I'm beginning to wonder if the night choking is causing some of this.

I’m 26 and I completely understand how embarrassing this condition is. I hate going out to dinner with friends because I need an entire pitcher of water just to get a bite or two of food down and sometimes, that doesn’t even work and it comes right back up. 

I’m also overweight. Everyone is always so shocked when I tell them eating is difficult and painful. According to my doctor, it’s because my body is in starvation mode. Anything I eat is stored as fat because my body has no idea when it’s going to get nourishment again. It’s very frustrating. 

I also get the chest pain. It’s excruciating and I wouldn’t wish it on anyone. I think that’s the thing I hate most about this condition. I can handle everything else, but the chest pain is miserable. It’s completely unpredictable. I’m so grateful for every minute I’m not in pain. 

I wish you the best of luck. There have got to be answers for us out there somewhere! 

Hi, Gallopinglawyer, ( loving the name as I’m a lawyer) Anyway in all seriousness I was diagnosed in 1987 and, had open surgery which I believe was by way of cardio miatomy, my swallowing difficulties resurfaced, I had an unsuccessful dialatation and, was referred to a professor that was very much in the know with Achalasia and, he performed an open Hellers a scar that basically cut me in half from left side to top of right shoulder. They destroyed the oesophageal sphincter in order to stop my oesophagus from narrowing. I’ve been very fortunate apart from the GERD ever since. But, in 2014 my symptoms started again, as you say the embarrassing moments of regurgitating into the nearest napkin or, in hand whilst trying to run to the nearest bathroom reared it’s ugly head again. I had the barium, manametry and, endoscopy and, was told there was no function whatsoever. The surgeon at the time basically told me that there was nothing they could do at this stage as it was a mine field due to the two previous open surgeries and, that he would probably see me again in two years!! That was it, so I have persevered with my little manoeuvres I’ve picked up over the years. However it reached a stage where it was completed unmanageable so just before Christmas I saw another surgeon at The Manchester MRI and, he ordered the three tests to be done but, informed me that the only option open to me was an oesopegetomy. I had two of the tests before Christmas and, was due to have the endoscopy on 3rd January but, they cancelled 5 scheduled appointments. I eventually had it done 3 weeks ago. However 9 weeks ago my abdomen became very distended and, painful, one visit to the A&E who informed me it was probably constipation, I knew it wasn’t. I was sent home with pain relief but, it has just got worse to the point it is causing terrible breathing difficulties, I saw my surgeon two days after the endoscopy and, he was visibly shocked to see me. He was furious that I’d been cancelled 5 times. When we asked him when the surgery was likely to go ahead and, what did the results show, he said “that isn’t my concern at the moment, we need to find out what is happening below your oesophagus” He requested a priority CT scan with contrast and, had bloods taken. It’s been ten days since I had the scan with no follow up appointment. I won’t bore you with the difficulty I had attempting to get through to the out patient appointments. In the end I contacted the CT dept that informed me that my report had not yet been written up, that was last Tues. He was kind enough to call me last Wednesday to confirm that he had written up the report and, it had been sent to both my surgeon and, gastroenterologist and, that I should receive an appointment last week. I’m still waiting 😢 I have been prescribed morphine for the pain and, I’m on a mushy diet as I physically can not swallow solids as the manametry test showed that even water is just sitting in my gullet. Even gravity is no longer on my side as they did the test whilst I was sat bolt upright. I don’t have any scales in the house so no idea what I weigh but, I can not get into my clothes because I am so distended. I’m 5ft 1” and, size 8 but, I think were the distension to go I think I would notice some weight loss, not much considering I’m not able to keep much down. I’m not able to pass water properly and, empty my bladder fully. I just don’t know?? I have never had as much reflux in my life and, wake up with saliva/blood on my pillow most mornings. I am even choking on my own saliva. I’m feeling rather desperate now. I have a personal theory that it’s your bodies own survival plan because I am a grazer, little and, often since diagnosis but, before things became really bad I just could not stop snacking. Midnight eating, I felt empty all the time and, nothing was satisfying my hunger but, now I have little or, no appetite. Much like a squirrel gathering for winter ha ha. This forum has been my sanity for the last few weeks when I fell upon it whilst googling Barrats as I have now been diagnosed with that as well. All I know is that at some point I developed the Barrats between 2014 and, now. Unfortunately I have not found any answers as to why I look like I’m about to give birth to a baby elephant. So I await an appointment and, results. All the very best with your battle and, I hope you win. Take care

Hi my son has suffered for over 10 years with achalasia he had the Heller myotomy in June and this past week he has started to have problems with food getting stuck again and having to push it down with water, since he's operation he hasn't been well either he's had terrible stomach pains and diarrhea, and feeling weak, I am at my whits end 😢😢😢 and don't know what to do anymore, he is 27 years old and the doctors have given him no help over the years it was through my own research and sheer determination that I found out about he could have achalasia and I found out about the Heller operation, it's only a couple of months down the line and already he's started to have problems he was so looking forward to finally putting on weight he is so thin, I'm currently going into a deep depression I do suffer from mental health problems myself but normally have it controlled I honestly don't know what to do anymore I'm so so scaired of it just getting worse and going back to how bad it was before the op, the hospital just descharged him after he's operation no follow up and I think that's so bad, I have rung he's surgeon and left messages on he's answerphone and got nothing back! He's GP asked me to do that because she said he needs an urgent CT scan, I don't know what else to do 😢

Hi Lisa, apologies for my late reply.  It’s saddens me greatly that you are unable to take any advice from your sons medical team and,  I can appreciate how frightened and, helpless you may feel. It is  outrageous that your son has not received a follow up appointment after his procedure,  I just can’t understand this.  Ordinarily from my own experience I would say that any procedure is not a cure for Achalasia but, a Hellers ought to relieve the battle of swallowing and, since his surgery was in June everything ought to have settled down.  Even after a Hellers procedure I experienced some difficulties in situations where I ate too quickly or, if I ate steak for instance I would struggle every time.  Usually for me the first meal of the day is often a little tricky and, I have to take care with food and, like your son I need plenty to drink especially with that first meal but, usually I found that eating little and, often did the trick. I recall still choking and, regurgitating very occasionally if I was rushing my food. Overall my second Hellers served me very well for 27 years.  I strongly urge you to continue to contact his consultant and, arrange a follow up and, insist that your GP send an email or, a letter asking for the same. Obviously your GP feels there is a need for a CT scan and, if you’re son were to get any worse I would get him to the A&E department at the hospital where he had his procedure. I wish you both all the best of luck and, it’s important for him to keep his stress levels as low as possible as stress can cause all Achalasia sufferers to have more difficulties when stressed. I really hope you have this resolved very soon. Take care x