I was just diagnosed with SMA Syndrome. I had a CT angiography to hopefully rule out MALS and SMAS, as every other test run had come back normal (endoscopy w/ biopsy, lactose breath test, gastric emptying study, etc), and then I got my results. They found an aortomesenteric angle of 10 degrees and distance of 5 mm. When I looked it up, I had no idea what I was supposed to do. My GI has been an incredible support through my testing, as she was willing to look for every possible disorder. I also have hypermobility issues, so I was paranoid about MALS, which is why we scheduled the CTA. I will now be meeting with a different GI who hopefully has seen this disease before, and my case has been sent to general surgery for a second opinion. So it sounds like, at least as of now, and with how concerned my doctor was, I'll need a surgical fix for this.
Between my trip to the ER for severe pain and my diagnosis, this journey took a couple of months, as I found a local GI clinic that could see me a lot sooner than if I continued going to a major hospital. I was extremely lucky they found it quickly, even if it didn't feel fast. If I kept my original appointment with the hospital referral, I still wouldn't have seen a GI for an initial appointment for 3 more months. But now I feel like I've hit a major obstacle. This disease is rare, and I'm starting to realize how crushing it is to have an issue that not many doctors know anything about, let alone how to treat it.
So, I'm looking for more surgeons for a third or fourth opinion. I've had symptoms for almost 6 months now. I lost 15 lbs in about 4 weeks (5 months ago) and have been unable to gain that weight back. I have tried gluten-free diets, I have tried dairy-sensitive diets, and I have tried the gastroparesis diet. Still no progress, and my symptoms are getting worse, and I don't know how much longer I can stop myself from feeling the need to throw up every time I eat (I take Zofran bc i really, really hate vomiting and have minor emetophobia).
Does anyone have any doctor recs or surgeons who have experience treating SMAS? Location is a factor, but MA & the New England area, TX, MN, VA/DC/MD, IL, MI are good options.
I investigated Danny Shouhed MD, in CA, since they specialize in SMAS specifically. I've looked at the Mayo Clinic, Baylor Medicine, Texas Children's, Michigan State, and Uni of Mich. I've used the find a doctor on Find a doctor - SMA Syndrome Help (SMASH) to look for some recommendations. I have a whole Excel sheet, but I don't even know where to start. If anyone has had any similar experiences, any surgeon recommendations, or has any advice pertaining to what their next steps were after an SMAS diagnosis, that would be a huge help.