Did your symptoms improve after the Heller Myotomy? Did you gain weight? How about pain and burning sensations after the surgery?
Did your doctor see the surgery as option one (before Botox and other treatments)?
What is your general view about the surgical procedure?
THANKS!
Hi @Frida ,
I have had 2 open Heller’s and am awaiting my 3rd one (hopefully this time a laparoscopic one), so I might not be the best example for you. As you haven’t received an answer yet from others I thought I’ld give you my point of view. My story is to be found under the story thread, so I won’t bother you with that one.
After my first surgery (11 y. ago) my symptoms (severe swallowing problems, no spasms yet) improved quite a lot. I thought the best possible result had been achieved. About 5 y. ago my problems returned and I had my second myotomy last January. My symptoms (severe swallowing problems and severe spasms) improved for about 1 month, after which they fully returned. I have just had my first Botox treatment, which shows me how great life can be. I haven’t been able to eat the way I can right now for over 15 years!!! Not even after my first myotomy! I can even eat an apple, I wasn’t able to eat that for 15 years. I haven’t had any spasms any more. This shows that the Botox has “switched off” my muscles, so the myotomy hasn’t done that. This means a new myotomy makes sense. I will go see the best European surgeon on achalasia area, he will perform this surgery. It’s dr. Schulz from Germany (so I go abroad, as I am from The Netherlands), he’s great!!!
After my first myotomy I was back to normal life quite soon, it didn’t take me more than about 1 month. My second myotomy gave a lot of complications, I was in quite some pain for about two weeks and had about 1 month of all kinds of inconveniences and really feeling miserable. I guess all due to the complications. It took me about 3 months to return to normal life again.
As achalasia was diagnosed I first got 5 balloon dilatations, then they decided surgery would be the best solution. That was years and years ago. Opinions have changed in the mean time, so my story would have been different if it started about this time.
My general view about the surgical procedure is positive, otherwise I would not go for a 3rd one… I am now hoping for a successfull myotomy, with a lasting result.
I don’t know if I gave you the answer you are looking for. I hope I haven’t scared you with my story, there is no need to get scared. The bottom line of it is that you have to find the very very very best doctor/surgeon to advise and to treat you.
If you have any questions, don’t hesitate to ask.
Isabella
Isabella,
You are very brave!! I have my first myotomy in 1997 and still fear the pain even though I have 2 years of successful swallowing. I gave up on doctors and stayed away until last year. I started to lose a lot of weight and didn’t have much energy to fight illnesses.
I had a dialation in June and December. During the last one, I asperated and a pulp was removed. Recovery was very bad and I’m back to soft foods. Since I gained weight and energy between June and December; they suggest that I have my Esophogus removed before my health weakens again.
How are you managing to be so strong?
Isabella,
You are very brave!! I have my first myotomy in 1997 and still fear the pain even though I have 2 years of successful swallowing. I gave up on doctors and stayed away until last year. I started to lose a lot of weight and didn’t have much energy to fight illnesses.
I had a dialation in June and December. During the last one, I asperated and a pulp was removed. Recovery was very bad and I’m back to soft foods. Since I gained weight and energy between June and December; they suggest that I have my Esophogus removed before my health weakens again.
How are you managing to be so strong?
Hi there,
Well, I am not so brave; I am scared to death!!! But what choice do I have? I want to live on having a normal life and saving my esophagus. If I don’t act now it might reach the point that it streches so much that I cannot have anything less than an esophagectomy…
My Botox treatment two weeks ago showed me how great life can be: eating whatever I want, whenever I want, not drinking with it when I don’t want to, not having spasms/pains anymore GREAT GREAT GREAT (thinking about the song: always look on the bright side of life…).
I want to live this great life! I don’t want to have to live without all those delicious foods I want to have!!! I want to feel as energetic as I do today and as I haven’t felt in 15 years (and I am still quite young, ahum, 33 years). I have 2 kids to take care of and I need to be healthy and strong (who doesn’t).
I am taking my last chance, I am grabbing it with both hands, knowing that there are no guarantees. I might go through this all without positive result, but it’s worth a try.
What I found out recently is that in the US it is much more common to have an esophagectomy. On which test results is that decision made? Over here in The Netherlands they told me it would be my next option, whereas in Germany Dr. Schulz tells me not to do it. He thinks I might have a successfull 3rd myotomy and I fully believe he is right. If my Botox works, my muscles work(ed) untill having that Botox, so there is work to be done by the myotomy.
Have you ever tried Botox, perhaps you have the same outcome?
I don’t want to give you false hope! I just want to make clear how things work over here in Europe, it differs from the US I guess. I am very hopefull, yet, I am very scared too. But I try not to think of my fears and I try to think about the good things in life and the gains a new surgery might bring me…
Love,
Isabella
I had a Heller Myotomy in 2002 with great results. You can read my surgery story and follow up at “my story” for TanTan7007.
it is important to find a good GI doctor who has lots of experience in dealing with A and knows all the treatment options and management options for symptoms.
Than, if Heller Myotomy seems the right thing to do, it is important to find a really good surgeon with lots of experience in doing the Heller Myotomy. I highly recommend to go to a doc who has done it least 50 times. If and how to do the partial wrap is ciritical. To tight of a wrap causes symptoms to came back quickly. No wrap or loose wrap might cause heartburn. The wrap can be posterior or anterior. Ask lots of questions and make sure your surgeon knows what he/she is doing and why.
The laproscopic surgery is much less invasive and much faster recovery than the thoractic. Ask if this is an option for you. Find a surgeon with lots of laprascopic experience. Good luck
Dialation in 2002 w/ Dr. Ippoliti at UCLA.
Great relief for about 6 months, then steady decline until…
VATS Heller Myotomy from Dr. Clark Fuller @ Cedars Sinai, Los Angeles, CA in 2004.
VATS is video-assisted thoracoscopic surgery. Compared to the lap procedure VATS goes in through your ribs, also minimally invasive. Cedars seems to be the only place that has perfected the technique. VATS procedure compared to lap–VATS enables the surgeon to see more of the esophagus, cut further up the esophagus, less into the stomach. That means the fundoplication procedure, common w/ lap, is not necessary usually w/ VATS. Most of us w/ VATS do not take any antacid medication and do not have GERD or reflux. VATS is more invasive, longer hospitalization time, by a day, also about a day longer on stronger medication. Recovery is similar to lap. The team at Cedars feels that the wrap can cause problems after the myotomy in that it can become too tight, which seems common, and also the lap procedure commonly necessitates the need for antacid medication the rest of their life.
All in all, the VATS has been incredibly successful for me. I take no medication, have no reflux and eat everything. Prior to surgery I couldn’t drink water and regurgitated at least 20x a day. I also had significant saliva buildup and had a difficult time with longer conversations because I needed to get rid of the saliva.
I highly recommend Cedars Sinai, however if you aren’t close to Cedars in Los Angeles, then I’d suggest making the trip anywhere to find a HIGHLY specialized esophageal surgeon. Most long term problems in surgery are due to lack of esophageal experience from a surgeon. In general, it is my opinion you need to go to a MAJOR metropolitan area in a teaching environment to find such experience. You have to balance your finances and insurance, but any mistakes made in the first procedures may cause problems for you later, research all you can at first to get to the best possible doctors. I’m guessing, in the US, there are probably only 4 or 5 surgeons that are truely qualified. I wouldn’t make a lap surgeon do a VATS procedure if they aren’t highly skilled, the type of procedure done is not as important as the skill of the surgeon.
I don’t post as much as I used to, many successful patients “burn out” on message boards, and I fear I have also, but I check in every couple of weeks and I’m more than happy to speak with and meet with anyone in the LA area. It is very valuable to actually meet a fellow achalasia sufferer and see hope for the future.
I really do eat everything now, salad, meat, bread everything.
I had my hellers in Nov 2004. The pain and discomfort lasted about 3 or 4 days, the swallowing took about a month to get on track and I was pretty much back to normal completely in about 3 months. Since then, it has been wonderful. I eat pretty much what I want, although bread causes me some problems if I eat too fast. Otherwise, I am as normal as the next person.
When diagnosed, I went right to the surgery. I said lets fix this now.
To this point, a great decision. Good luck to you.
Thank you all for all your messages.
I have been so busy lately and have not had the chance to say thank you.
I had the first post surgery appointment last week. I was very nervous before seeing the doctor. Overall, things are going fine. I am eating much better. I am not drinikng gallons of water with each meal in order to push the food down.I continue to feel as if the food gets stuck, but I think this will improve in the coming weeks. At the same time, I continue to learn from you all. I can’t believe I have dealt with this illness for so long, knowing so little about it.
My stomach is till very sensitive though three weeks after the surgery. I am just hoping this is temporary.
By the way, have you heard about a new procedure called TSE Cardioplastic? Apparently it is a new development, which suggests that we achalasians may have more treatment options in the future.
Take care and have a good weekend. I will stay positive!!
Hugs,
Frida
Hi @TanTan7007 and @IsabellaArnold :
My doctor isn’t sure why the surgery failed. Immediately after the procedures he told us they went “perfectly”. But he was unequivacal about going right back in (it’ll be exactly 2 months after the 1st surgery) and looking at everything again, re-scoping it, moving some of the myotomy stitches and reworking the fundoplication. I’m only one of 4 other patients (out of nearly 400 he’s done) whose operations failed, and in each case he went right back in and the 2nd time around they came out well.
I think another reason he wants to go in right away is that I’ve an NG tube for 7 months now. If it was a regular feeding tube it wouldn’t be so bad, but I can’t tolerate bolus feedings, so I’m tied to the pump for 6-7 hours during the day, and then I have to run water through it all night. I only run through 3 cans of Jevity a day (less than 1000 calories)–sometimes just 2 cans–at just 100 ml/hr. More than that (or faster) makes me feel bloated, usually accompanied by severe cramping with diarrhea. So my nutrition isn’t going well (don’t we all know about that!).
Also of concern to him is the frequency that the NG tubes fail. In replacing them, the radiologists aren’t always too concerned about how gentle they are in getting the tubes through my LES. As it is it usually takes over an hour to get them placed, with a good portion of that time trying to pry open or plow through it.
Bottom line for me is that I have faith in my surgeon (which each of us has to have to go through what we do), and am willing to risk it. However, if this 2nd operation fails, I’m just going to have a jejunostomy, let a nutritionist figure out my nutrition and be done with it for at least a year before I consider any other options.
I do have one question: what should I expect my diet to be for the first 6 months or so after surgery?
Thank you, Notan and Isabella, for your kind comments. And God bless to all.
I had this procedure very recently (2 months ago) with fundiplication. I will tell you it was the best thing I did. Certain foods still are an issue like tough meats, popcorn and sharp foods like chips. I have already gained about 12 LBS and enjoy eating again. Worth the $$.
hi there 
xxFor anyone in the midwest, Dr. Thomas Rice at the Cleveland Clinic is amazing. He did my Heller Myotomy and I am very pleased. From what I researched before my surgery, he is the gold standard in this part of the country.
Hi,
Lots of good info. on here! I had my Heller in 1998, age 27. I don't recall Botox even being mentioned. My choices were Dilitation, which I tried once (it helped for a few weeks) or Heller Myotomy. I had good insurance so I did the Heller with a partial wrap.
Surgery was pretty easy & I was out in a day. The worst was the gas they put in there (laparascopic) - the gas pain was worse than the incision pain.
I have had reflux ever since, lots of reflux with vomiting, even while on Prisolec. But the swallowing is easier, and I've gained weight. I was underweight at time of surgery, now I'm overweight. I still have to use water to wash things down, and take pills with cool whip to get them down, but swallowing is nowhere near as painful as before. One weird thing - I can't drink pop anymore, one drink makes me have the worst reflux / vomiting. Overall I'm happy I had the surgery and it has helped.
Hello everyone,
As to Nel’s situation:
I had my 2nd open myotomy done in January (5th) and it didn’t succeed either. I am going to have my 3rd next year (my first was done 6 Dec. 1995 and gave me relief for a few years). What has caused my renewed problems will always be unsure, what has caused my second surgery to fail isn’t sure yet either.
What I find strange and what I would ask my doctor if I were you: my surgeon (dr. Schulz, Europe’s top churgeon on achalasia) wants me to have at the very least 6 month between the last and the upcoming surgery. He even prefers the period to be longer (this including some insurance matters made me decide to wait untill next year). This as the scar tissue start developing within 2 weeks after surgery. The first half year after surgery this scar tissue seems to be as hard as wood and very hard to cut through. After that period it softens again and surgery is easier again.
I think something worth discussing before having your new surgery so quickly…
As to Frida concerning the TSE-Cardiaplastic:
In fact my 3rd myotomy will probably be done using the TSE-Cardiaplastic procedure. It is no new treatment, yet another way of performing the myotomy. In some rare cases it might be THE solution as one can perform the myotomy over a longer length (e.g. towards the neck). In Holland my next step would have been esophagectomy. Dr. Schulz in Germany thinks he can help me with another myotomy. I told this to my Dutch surgeon and he looked at the new procedure (pictures to be seen on http://www.sodbrennen.net/remot.htm ). He immediately agreed. He thought this procedure really might do the trick for me (him knowing me already, as he performed my January surgery). As Dr. Schulz is much more experienced and has performed the TSE procedure already, I am going to have this done in Germany (with my Dutch surgeon backing me up, supporting me -also in insurance matters-!!!).
TSE-Cardiaplastic is a very very new method, decribed in medicine as of 2004.
As already said: it’s not a new sort of treatment. It’s another way of performing the myotomy. By the way: fundoplication is still involved.
Love,
Isabella
// I was in the hospital for 8 days due to complications and I'm worse than I was before the surgery. //
Hello, Nel.
Did the surgeon say what went wrong? It sounds like you had an unusual outcome. Most Heller myotomies are successful. I am doing well a year and half after my myotomy.
notan
I had surgery at Tampa General Hospital (Alexander Rosemurgy) in late April and it wasn’t successful. I was in the hospital for 8 days due to complications and I’m worse than I was before the surgery. I just met with the surgeon yesterday and he said he needs to go back in and look at everything and make changes in both the myotomy and the fundoplication (which I also had).
So I’m have the surgery repeated on June 26. Ugh! I do trust my surgeon, and after doing a lot of research about him am very confident he knows what he’s doing.
I’ve had an NG feeding tube going from my nose into my small bowel since Nov 06 when I got aspiration pneumonia. (I aspirated barium from one of the tests they gave me!) And since I couldn’t get anything through after surgery, they had to put in another one. Actually I’ve had about 10 tubes; they fall out, clog or kink fairly often, so they have replace them (in radiology, under fluoroscope, no anesthesia of course, and it usually takes just over an hour). More than half of these tubes came out during the weekend, and I have to go through the ER to get them replaced. Average wait time is about 6-7 hours, which sucks.
I can’t have a regular feeding tube (directly into stomach or small bowel) because my surgeon doesn’t want anything–including scar tissue–to interfere with the myotomy or fundoplication. I get all of my nutrition (cans of Jevity) and meds through the tube.
I’ve read how so many in this forum drink lots and lots of water. I can only take small sips of water, because it gets backed up in my esophagus, too! It was better before surgery, and one doctor even suggested I try carbonated water, because the carbonation tends to help food get through, and that worked for me sometimes. But since surgery I can’t tolerate carbonated water at all–just small sips of plain old H2O. So I also run water through my tube all night long–both for hydration and to help keep the tube unclogged.
I like to read your stories. Please keep them up and provide updates when you can. They give me so much encouragement, and it’s great to know other people have the same problems I do. God bless to all.
Thank you all for all your messages.
I have been so busy lately and have not had the chance to say thank you.
I had the first post surgery appointment last week. I was very nervous before seeing the doctor. Overall, things are going fine. I am eating much better. I am not drinikng gallons of water with each meal in order to push the food down.I continue to feel as if the food gets stuck, but I think this will improve in the coming weeks. At the same time, I continue to learn from you all. I can’t believe I have dealt with this illness for so long, knowing so little about it.
My stomach is till very sensitive though three weeks after the surgery. I am just hoping this is temporary.
By the way, have you heard about a new procedure called TSE Cardioplastic? Apparently it is a new development, which suggests that we achalasians may have more treatment options in the future.
Take care and have a good weekend. I will stay positive!!
Hugs,
Frida
Hi Achalasians!
I've had mild A since 2005, and as a Canadian in international development, I travel a lot for my work and it took until 2011 to get a diagnosis and find a surgeon I was happy with. I had to be very proactive and advocate for myself to find out what was wrong, and then to identify a surgeon who could provide an intervention I'd be happy with.
In the end I had a modified Heller's myotomy with partial fundiplication in 2011 at Toronto General Hospital with Dr. Gail Darling. She was fantastic and really journeyed with me and was patient as I decided to go for it. Because my A was mild, I wasn't sure. However, after the 3h laproscopic surgery and 1 day hospital admittance, she and I were both pleased with how it went.
Two years later, I am SO MUCH better. I can eat meals in social settings without disturbance, which was the main thing. No discomfort 95% of the time now, it's great.
If there are any other Canadians out there wondering what to do, I'd really recommend Dr Darling.
Best,
Jillian