Median Arcuate Ligament Syndrome (MALS)

Oh sorry to hear that Debbie! It really depends on the team of doctors you see and how your personality blends with the physicians... I have gone through several doctors at Mayo, and it took me awhile to find a team that works with me and my needs. It is frustrating when you have a complex diagnosis and you have to jump through hoops to see the physicians you need, even then sometimes the gatekeepers don't allow patients to see the doctors they are requesting to see. I find that the most frustrating problem! Hopefully that problem can come to light at Mayo and they will become more willing to listen to the needs of the patients in seeing who they request to see, especially when it is a rare disease... the patient most often times knows more than the gatekeepers and it is difficult to see the experts in the field. Another problem is that the gatekeepers do not always realize that their colleagues in another department are the experts. Hope this makes sense to you.

I would focus on getting your nutritional status up prior to surgery, it is very difficult to get weight up prior to surgery. If you can eat a protein with a carb, a vegetable with a carb, a fruit with a carb. If you can supplement with boost or another nutritional drink do so. Surgery takes a lot of you and you will not be able to eat normally immediately after the surgery. I does take time for your body to get use to eating again. A multivitamin if you can tolerate one is not a bad idea, all my supplements are in Gummy form as I seemed to tolerate those best. When is your surgery scheduled and what type of surgery will you be having done? Have some more advice as you go through this process 😀 however I don't want to overwhelm you with information.

I was diagnosed with MALS and the doctors suggested surgery. I’ve lost quite amount of weight, and I am about 103 pounds now. Do I need to gain weight to prepare for surgery? If so, how much.

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

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!

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

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.

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

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.

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.