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I am a life long achalasian 73 now was about 14 when I first noticed the problem swallowing. I had a myotomy in 1976 and an esophagetomy in 1993. I am getting along great now.
albyone
I am 23 years old and got diagosed with Achalasia approximately 3 years ago
hi, i have had achalasia since 1999, and monitor the yahoo achalasia group often…for any new info… loli
My name is Richard. I have had achalasia since 1982. 1/2 dozen dilatations, 1 open Heller Myotomy, and 15 years later am facing an esophagectomy, which I am trying to live without. Besides meeting other interesting people, I am interested in hearing how other people have dealt with this disease.
I’ve had achalasia for over a decade.
Hi everyone,
Only recently I became a member of the Yahoo group and the German forum. I have been a member of the Dutch group for much longer, but as in Holland the group is not very active I started looking for other discussion groups. As I hoped, I found people to recognise myself and my achalasia problems in on the German and the Yahoo forum. As I often doubt my problems, this feels so good. It is also great to be able to sometimes help other achalasians.
My achalasia started in my teens (I am now 33 years old). I was misdiagnosed and had to wait a few years (thinking I was suffering from something like bulimia) to get diagnosed with achalasia. I then became 5 balloon dillatations and my first open Heller Myotomy on December 6th 1995. About a year after surgery my first spasms occurred, to never leave again. I've got 2 sons, Sverre in 1998 and Dayan in 2002. After giving birth to Dayan my swallowing problems got worse again (they were not completely gone after my surgery) and I had a bougy dillatation somewhere about 2003 or 2004. This did not help me and things got worse and worse. I had my second open myotomy January 5th last. It was a very difficult surgery, with many complications due to scar tissue. Spleen and liver had to be separated, they had grown together after my first surgery. Lots of tissue had to be removed from my E. muscles and the myotomy had to be performed all over again and over a longer length then the first one. My fundoplication had to be replaced by a new one. During this all my E. was perforated several times and this of course had to be repared. Furthermore a nerve was damaged during surgery, which results in still having diarrea 3 months after surgery. This should go away from itself I was told. My swallowing problems as well as my spasms have already returned. The swallowing is not as bad yet as it was before having my second myotomy. Things nevertheless are already again at a stage that I am thinking about new surgery. In the mean time (it is too early for a third surgery now, due to scar tissue I'll have to wait until about January 2008) I have had Botox Monday 23 April last. My very first Botox, after having achalasia already for so long. Boy, does it work!!! I haven't eaten this well in years. I can now eat an apple, which I haven't had in over 10 or maybe even about 15 years! I really enjoy life and dinners now! This is exactly what I needed, to know why I am going to have my next surgery: I want to be able to eat this way forever. Botox only works temporarily, but now that we know it works, we also know my muscles still work (despite my myotomies), so a new surgery might really succeed. I am from Holland, but going abroad (Germany) to Dr. Schulz for my 3rd one. He is Europe's best achalasia specialist.
Isabella
I am 38 and was diagnosed with Achalasia 4 years ago. I had the Heller Myotomy and had pretty good results; although I do have some issues with reflux now. I am currently pregnant with my second child. I am reaching out to others to support them and to learn what works for different people.
Retired teacher. Achalasia for the last 15 years !!!
Hello,
I am Francine Mom of Jenna Rose who is 18 yrs old and has had achalasia for 8 yrs.
Jenna has sought out many alternative treatments and is much better than she was 8 yrs ago. She still struggles at meals but is alot stronger and has put on the weight she needed. She also was recently diagnosed with scoliosis. She also struggles with skin problems on her scalp.
She is going to a Naturapath this friday to start Bowen therapy. This is something that when she tried it before around 2 yrs ago she was able to eat a whole meal without tightning. The nurse who did Bowen moved and was just new at it but just recently we found a Naturapath who is advanced in her training of Bowen.
Jenna Rose also has an appointment with a new gastro specialist on the 26 th of this month and she only went to a specialist once 8 yrs ago . I am just wondering what I should ask him and if there is any non invasive ways to gain more info on what is happening with Jenna’s esophagus and les now. I was wondering what an ultra sound shows etc.
Jenna Rose has been also greatly helped by the Kirkland Brand B 50 vit. and mineral pills. She was able to put on weight after starting these and what it seems is that she is able to absorb her nutrients. With this the achalasia she also had such problems with her stools even with lots of healthy fiber foods etc but since starting enzymes that is not a problem at all anymore.
Thank you for listening,
Francine
Ontario / Canada
Mom of Jenna Rose
I am 39, married, mother of 2 girls, ages 4 1/2 and 2. I live on the Outer Banks of North Carolina. I work in the advertising business selling for a local radio group. I started having symptoms of Achalasia at age 12 and was diagnosed at age 15. I had a heller myo and Nissen fundo at age 20 in 1989. I’ve had a few dilations post-op and have functioned pretty normally since. I do take protonix daily and about 6 months ago added amitryptaline at night - that has been GREAT. I’ve learned to manage my A pretty well and just move on with my life!
Diagnosed with Achalasia at age 12 in 1980.
Several tests/endoscopies/dilatations from 1980-present.
1994 Aspiration Pneumonia - Bronchoscopy
1994 Heller Myotomy (through thoracotomy)
1998 Emergency Total Esophagectomy with gastric Pull Thru
2007 Roux-en-y for excessive bile reflux
I am a 41 yr old, mom of two boys who had an esophogeal myotomy in 1999. Still have some trouble but managing.
Live in Collegeville, PA.
Hey, I’m only 14 years old and have been diagnosed with achalasia 2 years ago. I really want to talk to any other teens out there since I haven’t met anyone my age with this disorder.
I have had Achalasia for many years, but was only dignosed one year ago. I read the message board fairly regularly, and find lots of interesting information. I don’t post much, but really value the opportunity to read.
Hi - I was diagnosed with Achalasia at age 12 in 1980. Had several tests, dialations, endoscopies until 1994 when they did a Heller with a wrap. Emergency esophagectomy in 1998 and just 3 weeks ago had a roux-en-y due to excessive bile production. Life is good once again..... :)
Was diagnosed with Hodgkins lymphoma in Dec 06, area affected was the abdomen during this time had trouble swallowing food, it would burn, get stuck, sometimes vomit followed by hiccups, then mucos in the throat and nose. Did 6 mos of chemotheraphy, during this time the swallowing spasms seemed to calm down, a month after last dose it got worse again. After manometry testing was diagnosed with diffuse esophageal spasms, went for Bo-tox injection, didnt seem to work, don’t know what to do next.-Vinnie
Was diagnosed with A. around 1994 after a couple years of symptoms, I was in my early 30s. Managed it for years without procedures or meds, but under doc’s supervision. Managed a healthy pregnancy with severe A in 1999. Symptoms got worse over time so that I opted for Heller Myotomy with partial wrap in 2002. Very happy with the result of the surgery, have been basically symptom free since.
I am 39 years old and 1 1/2 years out from having heller surgery. I still suffer from spasms, and I have to have my heller “fixed”.
I was at the very end of testing prior to having my stomach stapled when barium swallow showed irregular esophagus. F/U manometer demonstrated achalasia which is one of the few diagnoses that stops them from doing the procedure. I am so fed up. I had so looked forward to finally being thin for once in my life. I wonder if the achalasia is due to stress (which I have been under quite a lot for about 10 yrs now; losing my mom, then my dad, boyfriend to cancer, losing job to get into a job I didn’t really know (medical to finance). Everything else was going along nicely and this had to happen!!