Connect
Achalasia type III: Anyone else?
I have recently been diagnosed with Achalasia type 111 and epigastric hernia; although the small hiatal hernia has been ruled out as far as my diagnosis with achalasia type 111 is concerned. I will have my first consultation next Wednesday with the surgeon who will be performing the (POEM) procedure on me. My referral from a general surgeon marked it as urgent, but I am still having to wait to be seen. I have lost and am losing alot of weight over the last couple of months. My symptoms with this are a slight burning sensation in midsection and the rib cage area and now seems to be going farther up. I'm eating less and less each day. The symptoms come on more when eating. The warming sensation also affects my head. Lately they feel like when I was going through menopause, but they don't last but for maybe minute at a time. Come and go during the day. I'm jittery in the .morning hours it seems. I'm mostly worried about my weight loss. Has or is anyone been diagnosed with this achalasia type 111? Can you tell me about how far advanced you are. I'm hoping that after next Wednesdays appointment, I'll be able to get the surgery procedure done soon afterwards. Even with all of the covid patients taking up the hospital beds.
Like
Helpful
HugInterested in more discussions like this? Go to the Digestive Health Support Group.
Connect
Thank you Colleen! I am curious if anyone else has had the difficulty getting the POEM through insurance that I ha and if so, are there any suggestions? It has been some time since I was diagnosed and denied so I wonder if the policies have changed sing my rejection? The past week had been a huge change for me in what I eat and a lot of pain (as well as what I can only refer to as a sinus infection on top of it). For me this is truly terrifying. I appreciate any comments in advance!
-
Like -
Helpful -
Hug
1 ReactionHello to all.
I am scheduled for surgery April 14, 2024 for my Achalasia III. I am not scared. I am very hopeful.
I found it interesting that Achalasia III is a rare disorder. . . . Very interesting. With my Dr. Google degree (Ha!), I've gleaned the good, the bad, and the ugly. Pay attention to the good. Use the bad and the ugly as questions for your surgeon.
Not treating the disease is a mistake. It will progress and lead to end-stage Achalasia. Don't wait. If you experience negative side-effects, please stay in communication with your doctor. (I've been guilty of recovery impatience.) I've read several posts in which people are suffering greatly post-surgery. It should not be normal.
If your surgeon did not explain you will live with GERD, you will. There needs to be a life-style change. It's easy enough. Pay attention to what triggers reflux. Don't eat late. And, if you're like me, prior to surgery -- I have to burp sitting straight upright -- or else I regurgitate. So, some of the GERD you're experiencing probably was normal prior to the surgery.
The surgery is a help -- not a fix all. Keep your expectations in check. Watch the positive YouTube patients. They will explain not just their relief, but also the lifestyle changes to keep GERD in-check by changes in eating, resting, etc. Remember, your lifestyle is already compromised. Be reasonable.
If after following your doctor's instructions and you cannot obtain relief, don't be afraid to seek a second opinion. Do your research.
See where your potential physician studied. Where they obtained their fellowship. Look at the reviews. Don't be turned off if the doctor obtained his/her degree from a foreign nation. (Both my GI and my surgeon obtain their MD outside the U.S. I love them!) If you have a research hospital in your area, they are using cutting edge methods.
While I am not a patient at the Mayo Clinic (due to location of residence), I respect this hospital and enjoy its educational posts.
I will provide an update post-surgery.
Can I ask which surgery are you having? I also have EGJOO with Achalasia 111 and I was told that any surgery would not fix everything. My esophagus from my throat to my stomach just doesn't work, so I'm hesitant to do anything that might make things worse.
Hello @cheryl46
I had the POEM procedure. It has increased my quality of life. I can swallow without any regurgitation
I am not a doctor, so I cannot advise what path you should take. What little I just read about EGJOO - the cause for the obstruction needs to be determined before a treatment is given. One such treatment is the POEM.
IDK what will work for you. I can only say my POEM surgery was a success
Thank you for your support. Did you have achalasia 111 as well?
Yes. I had Achalasia III
What is achalasia 111??