Median Arcuate Ligament Syndrome (MALS)

100 MALS surgeries! My surgeon here in Chicago has done 10 and out of those 10 only 3 got better. He wants me to see behavior medicine team now. But in the meantime I don’t want to be in pain. My appointment with them isn’t till May!

@lety83 - Oh no - I have to correct myself again. What I meant to say was that the surgeon told me the odds of success was 50/50! He had only performed 5.. He was the chief of Surgery at a University Hospital with many years of experience.
I suppose it doesn't hurt to see a behavioral medicine team.
I agree with you- most doctors don't know what it's like for the patient. Even the family doesn't always understand even if they see you in agony.

I have learned a LOT about MALS since 2015 when this all started for me. What is quite apparent to me now is that this is a complicated surgery and a complicated problem. But MALS is real, and when the compression is fully relieved people do get much better. I had my revision surgery 2 weeks ago and I have gone from 120 lbs to 126 in that time, and I just hope that continues. I had gotten so thin, I was thinner than I was in high school. At this point, you might be better off reaching out to another MALS surgeon who has a lot more experience. A psychiatrist can help you in the meantime. I started seeing one last summer and tried a few medications. First we tried mirtazapine which is an antidepressant that stimulates the appetite, but it had intolerable side effects for me. Eventually I tried a combo of gabapentin and nortriptyline and this eventually improved my sleep, anxiety and appetite enough that I was able to get through the next few months of surgical consults.

Hey. I was recently diagnosed. My doctors are discussing my options. I also have FMD and EDS. I look forward to learning more about MALS and being of assistance, if needed.

@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?

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!

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.

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!

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

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.