Median Arcuate Ligament Syndrome (MALS)

Posted by Kari Ulrich, Alumna Mentor @kariulrich, Dec 26, 2016

I am looking for other patients that have been diagnosed with Median Arcuate Ligament Syndrome. Although it is caused by compression of the celiac artery many people experience abdominal pain after eating, diarrhea, food avoidance. Usually the first doctors they see are GI doctors. It is a diagnosis that is made after everything else is ruled out. I am curious if anyone else has had surgery?

Interested in more discussions like this? Go to the Digestive Health Support Group.

redhead63 | @redhead63 | Jan 11, 2019

Hi:
I was at the Mayo less than a year ago, never saw a GI or Vascular Surgeon but I did see many Doctors there and I was Diagnosed with Neurological Functional Disorder, which I knew I did not have. I had a really bad experience with Mayo.
Thanks
Debbie

Kari Ulrich, Alumna Mentor | @kariulrich | Jan 10, 2019

In reply to @redhead63 "Hi: Thank you for all the information on MALS I will call the Cleveland Clinic tomorrow" + (show)

My vascular surgeon at Mayo Clinic was Dr. Gustavo Oderich, he was the perfect choice for me given his expertise in both MALS, Fibromuscular Dysplasia and Ehlers-Danlos. Thinking of you!

redhead63 | @redhead63 | Jan 9, 2019

In reply to @sclindajanssen "Dr. Kendrick from Mayo in Rochester did lap MAL release over a year ago. I had..." + (show)

Hi:
Thank you for all the information on MALS
I will call the Cleveland Clinic tomorrow

sclindajanssen | @sclindajanssen | Jan 9, 2019

In reply to @redhead63 "Hi: Did you ever get the surgery for your MAL? I was just diagnosed with Celiac..." + (show)

Dr. Kendrick from Mayo in Rochester did lap MAL release over a year ago. I had total relief of symptoms for about a year. Now symptoms are starting to return, which seems common with lap surgery. Sxs are usually triggered by sitting for 1 hour or more because compression is the worst in this position. Dr. Hsu in Connecticut seems to have the best outcomes from his open surgery as evidenced by the majority of his patients who had his surgery within the last 2 years (see Facebook group “MALS Awareness”). Prior to that, some of his patients are still struggling (see Facebook “MALS Still Struggling”). Dr. West and Dr El Hayek seem to have many MALS pts who are pleased for the most part. The best advice I can give is to educate and advocate for yourself before jumping into surgery. The best resources are pts with MALS in MALS Pals, MALS Awareness, and MALS still struggling. The awareness group has the most educational resources in their files.

redhead63 | @redhead63 | Jan 9, 2019

Hi:
Did you ever get the surgery for your MAL? I was just diagnosed with Celiac Compression Syndrome at the Northwestern in Chicago. I had Dr. Skelly do my first imaging of my arteries in my abdominal and he said he didn’t think I had MALS now 8 years later with the same problem I was told that I most likely have Celiac Compression Syndrome. In the process of looking for the best Vascular Doctor that specializes in this problem.
Who did you go see? And did they fixed your problem? Thanks

LionessCA | @103196 | Jan 3, 2019

In reply to @sclindajanssen "It can feel scary right away when you get a MALS diagnosis but know that you..." + (show)

Thank you for your reply the info is much appreciated. Can you give me an idea which hospitals have experienced doctors whom have performed this surgery before? My surgeon said he has only performed once. But it really sounds like he has not due to the amount of surgeons that will be in the room.

sclindajanssen | @sclindajanssen | Jan 3, 2019

In reply to @103196 "I have a CT scan done for a cough and the doctor found the typical hook..." + (show)

It can feel scary right away when you get a MALS diagnosis but know that you do have time to educate yourself about many important things: reputable MALS surgeons, surgery options (lap, robotic, open), pros and cons of surgery, management of MALS symptoms. Many people have jumped too quickly and are suffering greatly now. You can find documents about MALS and doctor’s lists on the MALS Awareness Facebook page. Read members’ stories and learn about reputable doctors in Connecticut, Cleveland, and Texas...
MALS is serious and unfortunately many doctors are not knowledgeable, even if they think they are; therefore, it is imparative that you take the time to educate yourself. MALS Awareness is the best resource I have found and I have spent plenty of time searching professional journals and have joined other MALS groups.
You likely have had this many, many years, so you do have some time to learn more about it as long as you are not suffering intensely right now. Self advocacy is essential right now.
I wish you well.

LionessCA | @103196 | Jan 3, 2019

I have a CT scan done for a cough and the doctor found the typical hook on the image. So they referred me out and those doctors ran some tests. The LV Ultraaound reflects 70% of velocity flow with experation. So they told me I am only getting 30% blood through my celiac artery. Will my other arteries compensate? They want to do surgery but I am hesitant. Will I still need to do surgery if my velocity is 70% and little to no symptoms? Will the loss of blood flow to that area get worse if I don’t have surgery? Can I live like that without surgery?@kariulrich

Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Jan 1, 2019

In reply to @kariulrich "Any work better than others for you? I have not used nausea bands in years, but..." + (show)

I have only found one type of nausea bands in our drug stores. It’s a good supplement to other treatments. Takes the edge off nausea enough so I could function. Ginger was also important.
Saved Zofran for worst times because of its constipating effect. It really works very well otherwise!

Kari Ulrich, Alumna Mentor | @kariulrich | Dec 31, 2018

In reply to @astaingegerdm "I have used nausea bands. Elastic wristbands with a small ball- like acupuncture." + (show)

Any work better than others for you? I have not used nausea bands in years, but would like to try them again. It seems motion sickness gets the best of me in the car, especially on an empty stomach... and well.... lol most of the time my stomach is empty because of the MALS! HA!