Median Arcuate Ligament Syndrome (MALS)

Hi @tahardy24 and welcome to Mayo Clinic Connect. You'll notice that I moved your message to this longstanding MALS discussion group in the Digestive Health group (https://connect.mayoclinic.org/group/digestive-gastrointestinal-problems/) I did this so that you can connect with other members living with MALS like @astaingegerdm @kariulrich @jmmb @lasirvent @jayhawk57 @redhead63 @ukmalsman and more.

Tahardy, while your photo smiles, I can hear the frustration in your words, how you're fed up of the pain and lack of understanding from professionals and from those around you. Here, you'll find people who get it. I know you'll get some strategies of how to be heard. I'm glad that you're seeing a counselor, too despite objections from others. It's important to have focused time on you. It is typical that referrals will be reviewed before getting an appointment. Did you self-refer or did your GI specialist make the referral for you to Cleveland Clinic and UofM?

I was recently was diagnosed with Median Acute Ligament syndrome . Have had this pain for years , but was manageable. Almost two years ago it hit and has not let its grip . Nausea, diarrhea, pain, gas, belching, back pain, exhaustion. I’m at the end of my rope mentally. Cardiologist found, he referred me back to my general practitioner she referred me to a vascular surgeon. The vascular surgeon although very nice was admittedly in over his head and although he had heard of mals; he had no idea what to do with me. He ended up writing me a referral to ; medical care of my own for a specialist in MALS. My husband of 35 years doesn’t quite seem to understand; I had to let go of my job almost a year ago September I just feel like my whole life is falling apart and I just don’t know what kind of decisions to make I’m just so overwhelmed and confuse. Called a dr in Cleveland metro hospital And dr at u of m. ; These Establishments Have to review my records and then review to see if they can take on my case.??? While I continue to suffer! This is a lot for someone who is in constant pain. To do anything at all I use cannabis and Kratom. I just want out ! I’m slipping in this rabbit hole and I don’t know how to hang on much longer . Seeing a counselor once a week and I know my husband doesn’t want that.either. Any answers

@helenfrances - I just want to add to the MALS description. MALS stands for Median Arcuate Ligament Syndrome. The ligament originated from the diaphragm. It can happen that the ligament presses on the celiac artery ( supplies blood to many organs and intestines). This causes diminished blood flow in the celiac artery. This becomes a problem after meals when intestines need to digest- can cause severe pain, like the coronary arteries with exercise.
I had surgery for this- ligament cut and later needed a stent to keep it open. 5 years later- I’m fine. I think of MALS as an anatomical problem. Celiac disease is an autoimmune condition where the body attacks itself in the intestinal lining- leading to malabsorption.

When a celiac person ingests gluten, his or her immune system will attack against its own body's tissue. Whereas, if a person is gluten intolerant, the consumption of gluten will cause short-term bloating and belly pain. Unlike celiac disease, gluten intolerance doesn't usually cause long-term harm to the body.

MALS is Nerve irritation and or damage can cause disturbances with myoenteric electrical activity to the stomach resulting in the symptoms. MALS symptoms manifest as numerous gastrointestinal complaints and can range from intermittent mild to chronic debilitating that are triggered after eating or exercise.

I copied these definitions. Hope this helps.

What is the difference between celiac disease and MALS?

I had surgery with Dr. Hsu in Jan. 15, 2020. I was in the hospital for 4 days. We were there for 14 days. It’s been 4 months. It’s a roller coaster ride but I have no mals pain. I’m just dealing with ibs and healing. Have you checked the Facebook Mals Awareness group? They’re wonderful!

I am bringing my son to Dr. Hsu for surgery, and would love some feedback on recovery time after surgery. How long were you down/home and how mobile/active are you now, 4 months out?

No yet because she does have part of her bowel that is not working. She had major bowel surgery at birth. And recently had a partial bowel obstruction in feb and our peds surgeon said there was part of her bowel that is not peristalsing. SO we are having surgery this friday for that and if that doesn't fix it MALS is our next thing. We have been very adamant about looking back at her other CTs and MRI with contrast she had in the mean time. Such a waiting game

Hello! I am so sorry that you are going through such a rough time!
if you are looking for a pediatric MALS surgeon, there is an amazing amazing one at Cincinnati Children's Hospital, Dr. Nathan. (https://www.cincinnatichildrens.org/bio/n/jaimie-nathan). He has a very unique surgery method, and has a very high sucess rate. He is very deliberate and thorough, so rules out everything before surgery, to make sure that the surgery is necessary and will really help treat the symptoms. I can personally vouch for him, he saved my life.

While MALS is listed as a rare disease, Dr. Scholbach and I do not believe MALS is rare; it is uncommonly diagnosed because it is unknown.