Hi. I am a 46 yr old. I had a helleirs myotomy and funden nisopllication when i was 12 yrs old. Ever since the op i have had trouble getting most food to pass into my stomach without the aid of a drink. Things started to get worse in the last few years so i went to my G.P. He referred me to a specialist who gave me botox injections but this didn't help. Last year i went back and had a small ballooon dalitation (there are 3 sizes) which also didn't work. I went back again and had a medium balloon dalitation and that didn't work either. My consultant said the only treatment left is the large balloon dalitation but strongly advised against me having that as it has high risk of death or long term stay in intensive care (he told me the last time he did this procedure the patient ended up in intensive care for 3 months and almost died). He referred me for a second opinion but that consultant couldn't offer any other options either just told me to go back if i suffer significant weight loss. My original consultant has arranged for me to have an edoscopy once every 2yrs for the rest of my life to check for cancer.
My consultant was honest to inform me that my future didn't look very hopeful and i wondered if anyone else knew of someone who had had the same procedures of me that then later died and how long they lived for. I know it's diffferent for some people than others but i am just curious.
Ever since the op i had my lungs get sore if i run very short distances and feel cold but none of the doctors have an explanation for this.
Does anyone know about these symptoms and why i have them?
Hi there. I had the Heller Myotomy & a Fundoplication, and three months later, a balloon dilation. Anything, foodwise, that goes into my mouth, has to be washed down with copious amounts of water. I have type 1, Achalasia, which means my esophagus is paralyzed. Finished.. no movement, hence the need for liquids everytime I eat. I was told that some people who have the Fundoplication [and there are different kinds of these], have the diaphram involved, so you might want to explore if your diaphram was involved.
You are in the right place for advice and I am sure much will follow re Medical Treatment options. However, in the interim it might make sense to mitigate the risks ( if you are not already) of acid damage as much as possible. Either from your stomach (if you get that) or from foods that linger. Obvious stuff like regular sips of antiacid and cutting back on acid foods (tomatoes pastes etc) and drink ( orange juice etc, fizzy drinks, and Acidic wines). I have not had surgery for A (at the mo) but my doc advised the above. Seems really obvious, but the penny did not drop until I was told- odd but...
Because of different terminalogy I might be wrong, but I had a pneumatic distallation. The idea is to get on the LES and Tear the muscles down. Anyhow as it was explained to ME it is a very safe procedure UNLESS there is a perforation which could happen. So when I had the procedure I was made aware that there was a surgeon on standby for that. Immediately after the procedure, (you don't feel completely awake). I was taking to radiology to drink barium and have them xray me to look for perforation, because if one is found then back to the o.r. for surgery to fix the perforation. So yes there is the risk of perforation, dying or spending time in the ICU, but the doctor I saw (richter in Tampa) had a lot of experience under his belt. The other problem with this procedure is the constant xray exposure. During the procedure the doctor is guided the entire time by an xray, So you are lite up for a good 5-10 minutes non stop and of course that can't be good. The relief I got wasn't the 2 years or longer I was hoping for, but the constant chest pains were immediately relieved and I could eat normal for a smal time.
The doctor told us that there was a 1% chance of a problem but if it happens to you then it's a 100% chance. (I guess trying to make humor). We did find another Gi doctor who was trained to do it but the hospital he was associated with did not do it. He too felt it was a fairly simple procedure with a lot of patients having a great response. Some people up to 5 years.
But as with all medical procedures, there is that risk.
I hate to hear you're having so much trouble with your Alchalasia. I think the Dr. who recommended you not have another pneumatic dilatation was probably one of the best calls he could have made. And I doubt seriously even if you did come through it ok, it probably wouldn't have helped you anyway. I have stage 3 Alchalasia and I am not a candidate for dilatations. Makes me wonder which you have. It sounds like it may be stage two. The risks greatly outweighed any benefits for you undergoing another dilatation. Perforation is of great concern in your case especially since that tissue has been stretched so much. I'm glad you chose to see him and not someone else who might have been dilatation happy to give you another. When I had my manometry the technician told me that she had just finished doing a 5th manometry on a man who had already had THREE partial myotomies and Dor and Nissen Fundoplication. He had suffered with it most his life and it took another surgery to straighten him out. And I feel quiet certain they will come up with something that helps you. Perhaps another plication overstitch procedure or something. I know you must be very afraid, uncertain and stressed out with all your dealing with, but there is someone out there who can and will help you. I asked my GI Doc if he was me, what step would he take next. He told me he would fly to either Northwestern in Chicago, Jonhns Hopkins in Baltimore or better yet the Cleveland Clinic. These are three places who are advanced in treating all types of Alchalasia. I have the top Dr's names at each of them. If you would like to research them, shoot me a private message and I'll be happy to forward the names of them to you. Are you in the US you say?
Regards,
DJRN
PS: plan on hanging around awhile...you're not going anywhere. 😊
I forgot to mention that i was also recently diagnosed with hypoperistalsis and presbyoesophagus. My consultant said i had a stomach of a 90 year old!
I had asked my old g.p a few years back if i could get any further problems with achalasia and he told me that once a person has an op he has no further trouble (which if course wasn't true), and this lead me to leaving it a longer time to mention i was having problems.
My consultant tried me on Nifedipine 5mg caps, one every eight hours when required but they didn't help.
He also had an extensive chat with a surgeon who refused to operate on me as he said the risk of perforation and death were too great. I would have a huge ugly scar across my chest as well.
Hi Neil, i drink lots of water with my food but as my stomach is small the liquid fills me up easily which means i cannot eat large meals and therefore do not put on much if any weight.
My consultant also told me to look up Rome 4 classification and Oesophagus Dysmotility but the internet is so big i didn't know where the best place was to look or start.
I drink mainly water too. Trying to keep the ph balance as neutral as possible. I just noticed you are in the UK. I met with an Achslaia meet-up group last weekend in London which was very useful. The group has produced an excellent guide called a Patients Guide to Achalasia. If you google said doc but add OPA to the search you should find their guide and meeting details etc... Apologies if you have had this advice already! Its a long thread
Hope you have a peacful weekend and the sun makes an appearance!
Fizzy drinks fill me up. I was told to drink milk shakes with ice cream in them which i have found very helfpul once a day.
I had googled support groups and saw the one in London but it is too far away for me to travel. I saw a list of support group but there were none within travelling distance at all.
That's interesting to know the group has produced a guide.
Thanks for replying again. We had sunshine all day yesterday but then had thunder and lightning!
Thank you. Ask your surgeon/specialist/GP what 'type' Achalasia you have. There is a patient's guidebook, that can be accessed online. If you don't have this, perhaps 'Alan,' from OPA, can direct you to it. There is some really good information in there about Achalasia, and the 'types.'
Hi Donna. I kept forgetting to contact my consultant to find out what "type" i have but finally have the answer now.
Apparently, i don't have type 1, 2, or 3 and my consultant has said this is because my condition is far more complicated than that. He is going to discuss this next time he sees me which i didn't think was for another year or so but his secretary seems to think it will be at the end of this year.
That is very interesting, considering there are only 3 types of Achalasia, as far as I know. I would push to see if you can have that consult with your Consultant sooner than the end of the year.