Median Arcuate Ligament Syndrome (MALS)

Sherrie, I can imagine you're very worried for your daughter. How did the consult with the surgeon go? Will you be proceeding with surgery?

You may also be interested in following the EDS expert blog here:
- Ehlers-Danlos Syndrome https://connect.mayoclinic.org/blog/ehlers-danlos-syndrome/

It is written by the members of the multidisciplinary team of the EDS Clinic at Mayo Clinic.

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.

@rbertolino85 - It must be a big disappointment to being turned away from Mayo. Looking at @jhmontrose 's suggestions on how to find a MALS surgeon I'm impressed by the number of surgeons in California. Maybe your doctor can help you contacting someone at the major hospitals in CA?

The two Facebook groups are MALS Pals and MALS Awareness. I used MALS Pals more because people discussed Drs from all over. There is also a Google docs surgeons list you can use to get started finding help: https://docs.google.com/document/d/1wIimASjCp039Zzh0hXKYf0Q2oT5yCW1H1iuyqwBysUQ/edit

2-24-2022 To Ingegerd Enesco. Ralph Bertilino. I got a call from Arizona, they have reviewed my medical records, and said there is nothing they can do that my GI Doctor and others Doctors at UCIRVINE Hospital are doing for me now. In 3 CT SCANS it is clearly states l have Mals. My GI Doctor wrote the referral and said l have Mals in his referred. He told me Mals caused my necrotic intestine that nearly killed me, as the surgeon also told me, l made it by 2 hours and may have died in the emergency room waiting 6 hours to receive medical attention. I’m going to call Mayo again tomorrow, and try to get more answers. Also, l asked him to verify the rejection with the Vasculal Dept. When he came on the phone he said this is the second time l have been rejected.. Thus, he means not to call Mayo again about this medical issue. lm crushed emotionally, and do not know what more l can do to become admitted to Mayo. I feel all alone in my home room isolated, no care giver just my I-pad, phone and these 4 walls. You have such a big heart spending your time with me, lm grateful for you, Ralph Bertolino.

2-24-2022. I’m Ralph Bertolino, can you direct me where l can find the list of Drs. regarding mals, in facebook? l can not find it. I live in the L.A. Orange County of California. Thank you ,Ralph

Ralph, I’m glad your doctor contacted Mayo Arizona. I assume they will contact your doctor and then you will find out what’s next.
I hope you are followed closely now by your current medical team.
Don’t worry about your “sour attitude “! You have the right to be upset.
Hope you hear soon!

My gastroenterologist. finally sent Mayo Arizona an email today requesting admittance to their clinic. I wait and wait, doctors are so unfamiliar with this disease they waste valuable time going in circles as my life may not survive another necrotic intestinal surgery. I feel since l gathered all the-research and did a presentation, l feel neglected, as many of you have expressed. Now l am afraid l will have to wait in a long line, even though lm in critical stage now. Can not get out of bed or take care of myself at this time. Does any one have advice to some how get Mayos attention ? I may have organ failure , this is next, other than another necrotic intestinal failure. l have already endured this emergency surgery that saved my life. I do not want to die from sepsis either. lm loosing hope, it’s been 22 years now in bed, waiting. Please forgive me for my sour attitude.

I encourage you to join the MALS Pals Facebook group. THey have a list of doctors and surgeons familiar with MALS listed by state. They also have a list of members who have MALS and listed by state. This has been helpful to me in trying to find doctors and surgeons. Hope this helps!

@akitamama - Welcome to Mayo Clinic Connect!
Our MALS group have had many discussions on the topics of diagnosis, surgery, recovery and complications. You should be able to check the recent postings to start with.
Can you tell us more about your symptoms and how you were diagnosed!
Will your other conditions have a role in the treatment decision for you?