My 22 year old daughter was diagnosed with Joint Hypermobility Syndrome in 8th grade and Celiac Disease when she was 18 and about to leave for college. Prior and post diagnosis of CD, she was always tired, constantly in the bathroom complaining of diarrhea, constipation, nausea, and occasional vomiting, had frequent stomach pain, and lots of joint pain. Recently, they changed the. HJS to hEDS and also diagnosed her with POTS, ANS dysfunction, MALS, rapid gastric emptying, and colonic hypo mobility. Her freshman year. of college, she lost 20lbs (she was small to begin with) and is now a senior and has lost another 10 over the years. Her BMI is now 16.3. The vascular surgeon initially didn't think it was MALS but ordered a CTA and changed to say it was "impressive" for MALS. The blood flow in the artery basically disappears on the screen during expiration. Where he said no surgery warranted before the gastric emptying, endoscopy biopsy, and CTA, he is now saying surgery necessary. With Boost, she's been able to maintain or gain a few pounds. She's up to 96 from 93. Recently., she called me from college crying in the fetal position with a heating pad stating the pain was unbearable. She has a very high pain threshold. The vascular surgeon is recommending open surgery and saying 50/50 chance of helping. He is saying the low numbers because there just isn't enough. research but I saw from the MALS organization and NORD higher positive outcomes. We are meeting with a gastric surgeon this week that does it laparoscopically and I saw there is now someone that does it endoscopically. It seems like major surgery for a 22 year old that has a connective tissue disorder for 50/50 but she is in a lot of pain. The pain is not always consistent with the MALS. For example, the recent bad episode started before she ate but got significantly worse after she ate and was from below her breast on the right all the way down to her right hip, and then across below the belly button to the left hip. Sometimes, she eats with no problems and other times, it is excruciating and she immediately has to lie down in the fetal position with a heating pad. One person in the office said 4-6 week recovery for open surgery and another said 2-4 weeks. Any advice/thoughts/recommendations are greatly appreciated. I'm so concerned about her having the surgery and it causing havoc on her body and not helping, but also worried about her not having the surgery and wasting away with no quality of life. Thanks for your time.

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