I am a 44 year old female living with achalasia for 10 years had a heller myotomy in 1999 a redo in 2007 and am now on a liquid diet it is painful, I had a barium swallow on the 23rd which could not be completed and a dilatation on the 30th that did not work they are now suggesting removing my “E” any feelings, thoughts or comments that may help me out in this difficult time?
hi… I am isha from malaysia… i’m suffering achalasia almost my entire life.last i rmember i was 12 when I cannot swallow.now i’m 34. i’m very sorry to hear your story…this A is very dpressing the more you depressed the more you will suffer. so… alm down n thing properly what should you do… you don’t have to go for the last option that fast… take care and take a deep breath…i understand how you feel…take care…
Thank you all for your words of advice. I have had an achalasia specialist for the entire time I have had achalasia. They said I have been very patient with my disease and I have exhausted all my options. I just got home from the hospital yesterday with a feeding tube until my surgery.
Tricia
Trish,
I’m soooo sorry things haven’t gotten better for you. Please look in to see Dr. Tom Rice in Cleveland. I’ve heard alot of great things about him.
Your Friend,
Rebecca
Rebecca,
So good to hear from you again. I also heard of doctor Rice. I am schedule for surgery here in Boston with a two surgeons one that specializes in achalasia and the other is a thoracic surgeon. Had my peop yesteraday as well as meeting with the surgeon and a CT scan it was a lot of info to take in.
Hope all is well with you and the family
Best Always,
Tricia
When is your surgery scheduled for? Is it by the same doctors? I’ll be praying for your speedy recovery.
Rebecca
Rebecca,
My surgery is scheduled for Monday and one of the surgeons is the one who has done my other surguries. I have know him for ten years and people come from all over the world to see him and the other surgeon too.
Best Always,
Tricia
Tricia,
I am so sorry to hear your story. This disease is a struggle but I believe there is a light at the end of the tunnel. Do you know what size balloon they used on you? My doc is using a 30 mm balloon in a couple of weeks on me. He said if it doesn’t work, he will try 35 mm. After that the last option is to do the Heller Myotomy surgery. You can still do dilations after surgery as well. It seems like you have tried everything and nothing has worked. You may want to go to an Achalasia specialist before you take the plunge and remove the E. I have heard of great specialists in WA, CA and OH. Removing the E is a big deal. I read stories of people not being able to sleep lying down and sleeping on a recliner all of their lives. Another young man has to massage his thraot with his fingerprints everytime he eats so the food can go down. It is drastic and should only be done in the most serious cases where every other option has completly failed. My advice is to book with an Achalasia specialist ASAP and see if there is anything you can do at this point. Make sure you gather all your medical records when you go. I hope that helps.