Median Arcuate Ligament Syndrome (MALS)

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.

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

@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?

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.

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.

PLEASE HELP! From Albany, NY
My 16 year old daughter is 56 days away from MALS and Nutcracker Surgery in Baltimore, MD, but is losing an unhealthy amount of weight due to MALS pain - lost 16 lbs in the last 6 weeks - now is 110 lbs. She is in so much pain, and we've been to the ER 2 times in the last week to get her fluids and request a feeding tube. Her GI Dr. doesn't feel she needs a feeding tube, but she is not getting any nutrition, or fluids due to pain. Her pediatrician won't touch her diagnosis, neither will ER Drs. What, if anything can we do to help her get through the next 2 months pre-surgery? I feel that the Drs here have such a lack of knowledge, and don't have any compassion to help, they just want to hurry us out of their offices constantly.

My 16 year old lost a little weight due to being in Indoor Track which triggered the pain to be worse than usual. I feel it is through weight loss that it causes a major flare that once you get to that point, you can't eat, and the MALS takes on a life of its own until surgery.

Hi,
I have had surgery. The surgery didn’t work 100% They only thing that got better was the vomiting. I haven’t vomit as much as I did before. But I still get pains after eating and now my nose and face get red after I eat then the pains start. Doctors are now suggesting celiac plexus block. But doctors believe it’s with my nerves. I went to Mayo Clinic they didn’t find out we what’s wrong with me. I was there for a week and left with no answers. They took so many test but don’t believe I had MALS. I was also there to treat my ulcerative colitis but they did tests and gave me medicine to go home with. I was in the hospital two weeks after my trip from Mayo.

@kariulrich

Hi
I had robotic lap surgery for nMALS 5 weeks ago. The surgeon cut the Ligament and cauterized the nerves surrounding the 3 nerves off the Celiac artery.
I had lost 40 lbs because I couldn't eat, drink anything, or exercise because of the pain after eating. I had my gallbladder removed thinking that was the issue in last Nov but it wasn't.
I had 20 various tests to eliminate any other diagnosis before MALS was confirmed by my surgeon.
Surgery is really tough and a long recovery. But I am eating again very slowly with smaller portions throughout the day. My pain from MALS seems to be gone, but I still have surgical pain because of cutting the nerves.
Each day gets a tiny bit better so I'm hopeful things will be better soon.
If you think its nMALS or MALS, Facebook has a few great pages that was very helpful. MALS PALS is one and the other is MALS Community Awareness.

Hope this helps.