Median Arcuate Ligament Syndrome (MALS)

Hi! I am new to the group and have been going thru a very rough time with my 15 year old daughter. She was actually born with Heterotaxy with Polysplenia. What that means is she has a right sided stomach, she had half the bowel at birth that you should have. Also no spleen. After multiple surgies to repair her bowels, bowel obstructions etc...they found 1 spleen at 4 months old. We did pretty great until about 1 year old and another round of partial blockages. Had surgery but was not a total blockage. Fast forward 14 years and out of the blue she started having horrible stomach pain. And it just gets worse and worse and worse. We have had CT, MRI, Ultrasounds, upper GIs...everything. We are under the care of peds GI and peds Surgeon in Portland Or. She had surgery Feb 14 2020 for a partial bowel obstruction. She literally felt better for 1 day. She has lost over 20lbs and eating is the most painful thing for her. She has missed so much school. But thanks to Covid we don't have it now. Today she had the worst episode yet. Stomach pain at a 10+ , vomiting and a ambulance ride to children's hospital. Thinking she is obstructed again....well come to find out she is not. Her bowels looked great. They gave her fentanyl for pain and for the first timenin 6 months my child was not in pain. I recently started taking my daughter to my acupuncturist who's daughter happened to have MALS. 4 years it took to figure it out. She has every symptom of MALS. Every single one. And being that her insides are different anyways I am open to anything. But We just feel like the docs think we are crazy! We advocate so hard for her and are fighting for her life. She is deteriorating. We brought up MALS to the ER docs and they are like never heard of it.
My acupuncturist told us of Doctor Shin Connecticut. We are in Portland Or and it's so far and with Covid and the doctors are just plain scared of my child. Just wanted to hear others stories, advice. We are struggling so hard. She is already so complicated but it's like pulling teeth for doctors to believe u. Thank u for letting me share.

@mommy25k - CTA is a CT angiogram. Regarding night pain I never had that. There would pain after meals mostly.

Was reading you post. What is a CTA? Also does MALS cause weird in the middle of the night pain? Pain so bad that one is nauseated and very dizzy?

@redhead63 - You are not to old at all! I was 70. I did not lose weigh either.

I was told that I was to old, I didn’t loose any weight, sometimes I get stomach pain after eating but not always and I have HEDS. Apparently HEDS can interfere with the surgery. That is what I was told.

So good to "see" you back on Mayo Clinic Connect again, @kariulrich. How are you doing?

Hi Kari,

Thank you for your post. You are such an encourager! I appreciate your passion for connecting with the FMD family and helping others in need.

I'm in quarantine for 2 weeks. I'm struggling with my emotionally health. Self care is a priority in these unknown days. Books, uplifting movies, gratitude journal, and devotional time is what helps me. Being alone I have to be creative. Praying for our country in the days to come.

Blessings, Prayers, Peace & Hope.

Linda A❤🙏

MALS/FMD/EDS COVID and Chronic Illness Post https://fibromusculardysplasia.blogspot.com/2020/03/self-quarantine-is-much-like-having.html

Yes, please check out MALS and see another Dr. You may also want to ask your PCP if he knows of anyone who specializes in MALS. My daughter had surgery 9 years ago for it and again just last Friday, 1/31/2020. With the first surgery for the MALS the surgeon also did a Nissan fundoplication. The surgery she just had they had to repair an esophageal hernia, which was much larger than they anticipated, the Nissan fundoplication came undone so they had to redo that all over, remove scar tissue from the celiac artery, causing MALS ( the ligament had already been cut away ) as well as pyloricgastroplasty. This was done by a general surgeon at a hospital an hour and a half from us as he is the only surgeon in our area that deals with MALS! I wish for her sake that she does not have to go through this again. If she does get MALS again, as surgeon stated he wouldn’t guarantee that she will not have these issues.

Check out Mesenteric Artery Ligament Syndrome. There’s also lists of info on MALS Awareness on Facebook