Hi,
Not sure if anyone is still on here but I was recently diagnosed with MALS and I am scheduled for surgery in 5 weeks. From what I have been reading, so many people suffer for so long before getting diagnosed and I should count myself lucky! This hit me hard in feb and landed in the Er with them telling me to see my gi because I was having a crohns flare (yes I have crohns too, 11 years now) they ran test after test and said nope it's a gi mobility problem (severe ibs) I fought it and they finally ran one more test, which was an ultrasound and it showed that I have 70% compression. It took 3 weeks to get in to see surgeon (university of Chicago) and he said we would do surgery, today I found out that the soonest they can schedule me is aug 1st! To be so close to a possible resolution but yet so far! I had to go on medical leave from work 3 weeks and was I am lucky enough to have a job and boss that will let me work from home. I don't go anywhere especially if food is involved, people just don't understand how painful it is to eat and then if I break down and eat I'm miserable and not in my own house. I have been pretty much house bound since march and just can't stand it, I just want this over with!
I am so so sorry for those of you who have suffered for so long with this!! I am sure there are so many others that are dealing with this but don't even know what it is!
I am nervous that this wont fix it and the surgeon at u of c not only releases the ligament he also removes the celiac nerve bundle. I am worried about what the side effects are of having those nerves removed?

Advise from someone who has had this surgery would be great!!
Thanks
Dee

Hi

I just found your post and I'm curious how you did with your surgery. i also have wondered what the effects of removing the celiac nerve bundle would be. what tests did they run (before the test that showed compression of the artery)such that they thought you had severe IBS. Did you have an electrogastrogram. If so, what did it show? Did you have duodenal mannometry? if so what did it show. Did you have a gastric emptying study and again what did it show?

thanks

Chris

Hi Dee,

My name is Susan and I have been diagnosed with this horrible syndrome in Sept. I have been combing the internet to get help. I am considering going to Chicago to have the surgery.....PLEASE share how you are doing, how it went and every detail you can muster up.
This is horrible and I too am getting to where I am housebound. People just don't understand how debilitating this is.

Thank you and I hope it went well for you!
Chislw@aol.com