Update on median arcuate ligament syndrome (MALS) situation

Hi,
I'm new to this group.

Can someone please tell me where to start for an official diagnosis of MALS? As in which exact doctor and/or type of MRI (area/contrast/no contrast/CT scan, etc.)?

I was diagnosed with endometriosis (I was covered) and had laproscopy to remove it. I was left with pain in my lower-right side. Fast forward four painful years later and I was finally diagnosed with Pelvic Congestion Syndrome, Nutcracker Syndrome to be exact. During the surgical procedure to correct that a stent was placed in my left renal vein. I had relief for a short-lived time. I am now living in excruciating pain every single day. I have severe back pain when standing, stomach pain at all times, especially after eating. The pain also radiates down my thighs/legs, tingles, and sometimes I have pain that radiates down my right arm. I am looking for a 100% sure diagnoses and I am looking at MALS for some real hope of finally getting my life back.
Thank you so much for your help, consideration and time.

@nikde000007 I have had chronic abdominal pain for about seven years and about five years ago started getting nauseous every time I eat. It got to the point that I have to lay down every time I eat so I only eat once per day late in the day. Dr checked my celiac artery and found it 90% blocked. They put a stent in and immediately killed 10% of my spleen. I started going to Mayo in January and through many tests have discovered that I have MALS that is a ligament pressing on the artery causing the blockage. This is complicated by a stent in the artery that is crushed by the ligament. The celiac artery is the main blood supply for the stomach, spleen, pancreas, liver and part of the small intestines. The blood flow is completely blocked since the stent was placed and the only flow now comes from down below all these organs going up. I go back next week for a consultation with a surgeon to discuss releasing the tendon.

I hope all goes well for you. I had an untreated abdominal wall tear for 6 yrs. Was 90% bedridden in excruciating pain. During this time i developed very severe epigastric nerve pain. I was recently told I have Celiac plexus issues. Your condition sounds more serious than mine but like you eating is an immense struggle and I also eat late in the day. Im seeing the surgeon shortly to check on Mals, dont think I have it but I get severe throbbing from my aorta. Its frightening. My hubby died from aortic dissection, so im over cautious. Keep us posted.

@nikde000007 I have had chronic abdominal pain for about seven years and about five years ago started getting nauseous every time I eat. It got to the point that I have to lay down every time I eat so I only eat once per day late in the day. Dr checked my celiac artery and found it 90% blocked. They put a stent in and immediately killed 10% of my spleen. I started going to Mayo in January and through many tests have discovered that I have MALS that is a ligament pressing on the artery causing the blockage. This is complicated by a stent in the artery that is crushed by the ligament. The celiac artery is the main blood supply for the stomach, spleen, pancreas, liver and part of the small intestines. The blood flow is completely blocked since the stent was placed and the only flow now comes from down below all these organs going up. I go back next week for a consultation with a surgeon to discuss releasing the tendon.

@nikde000007 I have had chronic abdominal pain for about seven years and about five years ago started getting nauseous every time I eat. It got to the point that I have to lay down every time I eat so I only eat once per day late in the day. Dr checked my celiac artery and found it 90% blocked. They put a stent in and immediately killed 10% of my spleen. I started going to Mayo in January and through many tests have discovered that I have MALS that is a ligament pressing on the artery causing the blockage. This is complicated by a stent in the artery that is crushed by the ligament. The celiac artery is the main blood supply for the stomach, spleen, pancreas, liver and part of the small intestines. The blood flow is completely blocked since the stent was placed and the only flow now comes from down below all these organs going up. I go back next week for a consultation with a surgeon to discuss releasing the tendon.

I am 5 hours away as well and I see the surgeon Monday to determine whether I have surgery or not. If not I’ll have wasted 8 trips and more than a dozen tests. I can’t understand why they are so reluctant to do that surgery.

@davidshivers
I was diagnosed with MALS some years ago- it took time to get the diagnosis.
The surgery to cut the ligament is not too complicated, but does not always get rid of symptoms.
I was fine initially after surgery but symptoms recurred after 6 months. The artery had been so deformed by the ligament pressure that it never really straightened out. I had a stent placed and symptom’s disappeared for 7 years. Again, the pain and nausea returned and a new stent was placed inside the first one. I had to have another procedure this year, 3 years later- a balloon opened the artery up again, not complete, but enough to be pain free again.
I still have nausea and poor appetite for 3+ years, but no pain.
The alternative is open surgery with vascular repair. I wouldn’t mind, but vascular surgeon does not think it’s a possibility for me.