Hi, my name is Rich. I am interested in achalasia because I have had it for 25 years. I had a friend who led me to this site. I have never met a person with achalasia exept over the internet (so far, only two). As I read through these Introductions, I was amazed to find the number of people with this disease. I am researching now because it appears I need to have an esophajectomy. I’ve had two balloon dilitations and two botox injections and they are reluctant to continue with those treatements because the shape my esaphagus has taken. It’s in a “J” shape. Myotomy has also been ruled out because of the “J” shape. I am pretty desperate and scared. I am hoping to learn about other treatments. So far, I’ve only consulted with the University of Michigan. Thanks in advance for any information. Or if I can provide inormation to any of you I am more than happy to share what I know about this disease.
My name is Howard and I have had Achalasia since around 1988. I am facing a Heller Myotomy in the next few days and hope that all will be well. The joke is that I am 70 and have come out of retirement to take a church (I am a pastor). I should have had this done before this point, but I was scared and dumb.
I was told to by the doc, this is a lifetime decision when you get dilataion and chances are you’ll have acid reflux most of the time, well doc its better choking on food all the time,i had acid reflux that night after the procedure, and never had it since,i just watch what i eat,take time chewing,drink plenty of fluids to wash it down and after dinner at 6:00 just drink water till beddy-time, had to give up my coca-cola,otherwise i would burping all the time,drinking green tea now-cheerio
Hi, I had problems with acid reflux for as long as I can remember but suddenly while on holiday with my son I found difficulty swallowing and was sick very easily. My poor son, who was only about 7, was really worried so I had to play it down. When I got home again it was still a problem so I went to my doctor. I had a series of tests but over the next 4 months lost two and a half stone. I finally had treatment with dilation which was very successful. I was told I would suffer with acid reflux after the operation but I have had less problems than before the operation. I still have to think about swallowing and it takes me longer to eat - the operation happened some 5 or 6 years ago. Oh and I put all the weight I lost back on but then stopped - I no longer seem to get the full up feeling.
Vinnie, you can not drink carbonated beverages with Achalasia!! It swells up in the throat and makes it harder to swallow! Stay away from soft drinks!
The spasms are worse during stressful times in your life. When I am totally relaxed I can swallow much better.
Hi everyone,
I’ve had achalasia since ‘94 but wasn’t correctly diagnosed until 1998. I had a dilitation but it didn’t work for long so I had the Heller Myotomy. Have had acid reflux ever since, and just got diagnosed with “laryngealpharyngeal reflux” which is a fancy way of saying acid reflux that goes up higher in the throat. Last year I was diagnosed with Scleroderma and Reynauds, the diagnoses just keep on a comin’. Never a dull moment. Nice to meet you all!
Karen
Well folks it feels like the old heartburn is back,went to Sbarros had 3 slices of pizza and 4 refillables cokes,felt like a teenager again,later on the heartburn returned,had to stand up for hours,not swallowing normally like i should,but time will tell-vinnie
can someone tell me what this is,after swallowing food i have to pause and wait for a burp or air to be purged, is this a spasm or what,people look at me weird when i do this,can somebody tell me
Vinnie, you wrote: “after swallowing food i have to pause and wait for a burp or air to be purged, is this a spasm or what.”
I think I’d have to be there when it happens to answer you, but I would tell you that I don’t think it is a spasm, since spasms are usually incredibly painful and you make no mention of having pain. I think what is happening with you is that this “pause” is the period of time in which the food is sitting in your LES area and then proceeds thru to the stomach. There is a change in the air pressure in your esophagus when the food moves from the esophagus to the stomach. In my own case, I sometimes give out with a loud hiccup when this happens. Either I feel the food moving to the stomach or I feel less tension in the LES, a clue that the food is no longer there. I affectionately call this “glass shattering” hiccup my “all clear” signal, and I sometimes use that as an indicator as to when its alright to take my next bite of food.
Cyn
gas and flatulence-it seems after pneumatic dilation i have constant gas and flatulence, no matter what i eat, does anyone else have these symptoms
Hey There I am so glad I have found this site I have never felt so lonely! I have suffered with Achalasia for around about a year possibly longer though.I was diagnosed last week and well it’s a relief tbh but crap as I am only 18 years old and well in several years time it may begin to fail and then I am thinking…what then?
I dunno
x
My daughter has achalasia. She was diagnosed when she was 13 and struggled to swallow food and water. She had a H myotomy and Dor Fundo soon thereafter, which gave her great relief. That will be 3 years ago this March. She eats fairly normally, but has learned that steak and meats do not agree with her. She feels spasms once in awhile and she notices it is worse during swimteam season when she works out fairly hard. She also occasionally experiences intense pains. She says they do not feel like spasms, and even prescription strength pain killers don’t help. I’m interested in learning more about this disease. My heart goes out to her and all of you that have this baffling condition.
I have had Achalasia for many years, but was diagnosed with GERD for years. Kept getting worse. No sleep at night. Food would come out my nose during the night and the burning was horrible! Had a Heller Myotomy at Vandy about 5 years ago and am doing well. Still get choked on food at times and throw up, but sleeping at night! Worth the surgery! I was told that the Heller can not be done again if the Achalasia gets worse again. It only lasts about 10 years. Then a very radical procedure is performed taking out the esophogus. I have decide not to have this done…ever. I am 59 years old.
There appear to be some misconceptions here. There is no definite “end” to a heller myotomy working. It can work for a year, it can work for 25 years or more. Sometimes it can be the skill of the surgeon, or at other times how well you take care of yourself that makes the difference, or one cannot even claim to know the reason why it works or fails. Many people have had second myotomies or additional dilitations when the myotomies fail, and with much success.
As far as carbonated beverages (soda) is concerned, it has been demonstrated conclusively that we achalasians are of two minds here. Some cannot tolerate nor try to drink it, while others swear by it as the best thing since “sliced bread” (not usually good for achalasians. In my own case, having had my one and only myotomy in 1991, soda is the drink that has kept me going so long, and its been demonstrated conclusively at the hospital, using whats called a gamma camera, that water hardly moves the food along at all, while soda rushes it right thru to the stomach. What works for one may not work for another, but please don’t universally condemn soda for achalasians.
We are all different, and for those new to the disease, it is a discovery period to see what works and what doesn’t. We also learn much from each other.
Richard
Hello everyone, my name is Katie and I have Achalasia. I do not post here very often but I am a part of the Yahoo A site.
I am planning a Achalasia Meet Up that will be held in Richmond Va the weekend of January 16-18 2009. If any of you in the Mid Atlantic Area would like to attend we would love to have you. I myself have never met anyone with A so I think this will be a fun weekend to talk to folks who really understand what we all go through. If you are interested in attending please email me at kt_gibbens@yahoo.com
Hi, I have been diagnosed with achalasia a couple of months ago.
I am booked in for surgery in 2 days and nervous about it.
It is really good to find I am not the only person with this.
Listening to others on this site it sounds like I am in the middle of
spectrum. I struggle with toast for breakfast the most and meat for dinner. Hot food like fries and pies are not too bad and I nearly always need a large drink to wash it down when the food sticks.
I have found taking large breaths when I swallow helps. Fizzy drinks
seem to come straight back up. I personally feel like a prisoner not being able to simply go out for dinner because I am scared of throwing up.
I also have a sharp/stabbing pain sometimes on my lower right side that my doctor thinks is from swallowing too much air which builds up in my bowel. Does anyone else have this pain or know what could help with the nerves before surgery?
Thanks
hi i feel like i’m not the only one after reading your comments i’m 27 i’m dealing whith this for about 2 years having 3 dilatations and 1 surgery a year ago but 3 days ago the nightmare came back yes you are right i’m havin troubles swallowing again and reading all of you guys i know this is neverending and i hope to live many many years cause i have 3 kids and i want to enyoy them i want to play whit them i want to know my grandkids an things like that but i want to know what is life about after my 30 or 40 you know i feel like i still have to many things to do and no matter what my situation is i want to live i want enyoy my life… good look for all of you who can not enyoy a good dinner whithout having troubles swallowing.
Hiya, my name is Kylie and I am from Coleraine in Northern Ireland. I am 22 years old and I was diagnosed with Achalasia about 3.5 years ago. I had cardiomyotomy surgery and fundoplication almost 3 years ago and I’m still suffering from symptoms. I am interested in hearing from people’s experiences of this disease, than you.
Thank you for your wise words!