Median Arcuate Ligament Syndrome (MALS)

@Bachsmbachsmom thank you for sharing the photos, they are helpful. What kind of GI work up have you had, in addition to any vascular work up? The symptoms you are sharing are relatable to all of us!

@techchick1025 I have had the completely opposite experience with Mayo Clinic, they are the leaders in the number of MALS patient they treat. I have had nothing but a positive experience with my team of physicians. Unfortunately because this is a rare disease even experts don't have all the information they need... there truly is no experts with MALS, however there are physicians who have a lot of experience. We need more research without a doubt. I know emotions can get high with this disease, frustration and pain can be overwhelming. I am happy you found the help you needed.

Let me know too @ukmalsman

Oh... Horse back riding can be a challenge at times. The exercise comes with pain, both from a vascular standpoint and I believe scar tissue. However for me the benefits are pain worthy. I measure food and activity by if it is pain worthy or not. LOL... I laugh, but it is quite serious, right? I think may of us hide our symptoms well.

Hi @kariulrich
You're right we do hide our pain well, probably too well! Horse riding is a distant memory for me, I can barely travel in a car without wincing. Did you see my post on Foods for MALs sufferer posted on Nov 4th, it has helped me maintain my weight by sticking to that philosophy 'anything white is alright - stay away from anything Green, Red or Brown!'

I made 4 long trips to Mayo and got absolutely no where with any single problem I have and there are many. They focused only in fibromyalgia which I’ve had for 25 years. Suggested 3 week pain management class costing thousands and completely ignored the incidental finding of avascular necrosis or my immune system and connective disease issues. I found all new fairly local DRs that are on the ball now. I look forward to getting the proper treatment and attention from DRs that actually listen and see the big picture.

I am trying to catch up on posts, so I really appreciate you letting me know about the Nov 4th post! Look forward to reading it.... love my carbs....guessing that is what you are referring to. My cookie based diet worked wonders for helping maintain some weight...now I am into Red Bull energy drink for lunch, little pain with that.

@techchick1025 So happy to hear you got the help you needed, especially in your complicated case. I know it is difficult when you have a diagnosis of fibromyalgia and when you see a doctor it beomes easy to blame all your symptoms on fibro. I had a similar experience in my early twenties when I had symptoms of joint pain, every doctor I saw thought my pain was due to fibromyalgia. When I lost weight I was told they suspected I had an eating disorder, they thought stress and anxiety was why blood pressure was high at a young age... but no one took the time to put all the pieces together. Finally after several decades I went to Mayo and a wonderful cardiologist took a step back and put the peices of the puzzle together, a rare vascular disease. It was too late at that point to cure my hypertension, however I will say Mayo for me has saved my life. Diagnosis in a complex patient is not easy. Once I had my diagnosis it still was not black and white... there where many more diagnoses to add. Healthcare is dynamic and so is the knowledge. I can appreciate what you have gone through, especially the travel for healthcare ..it is expensive, exhaustive and can have a negative impact on over all health. Hopefully in sharing our experiences we can help each other navigate the good and the bad aspects...especially in the MALS community. I believe strongly that more support and care is needed, especially aftercare of complex patients like us. May I ask what did your local doctors do differently that made a difference to you? For MALS, finding a GI doctor that will look at a vascular cause is one area we need more awareness...so many of us are sent to GI,which is needed but when all of our GI work up comes back normal the investigation stops. Vascular disease can be invisible... especially for those under the age of 70-80, not something commonly thought of in young and middle aged adults.

@redhead63 No, my surgeries did not fail at all...they were both a success. I need to explain further...I have a vascular disease called Fibromuscular Dysplasia or FMD, on top of my MALS diagnoses. My other diagnoses include Ehlers-Danlos Syndrome, brain aneurysms. My first surgery was a complete success... I had open surgery that involved a bypass of the celiac artery with a Dacron graft... after the ligament was released my velocities stayed elevated so the surgeon did the bypass...it was also determined through intraopertative ultrasound my hepatic/splenic artery had stenosis that was not picked up on imaging so I had a bovine patch angioplasty. This surgery was a complete success, I gained weight, had energy and no pain....for three years. My pain did return, but not because the surgery was not successful. During my second work up all test showed my arteries where good...but I started to loose weight, could not eat due to pain, my quality of life deteriorated to the point it was decided to do an exploratory surgery (It is very rare to have this done now, due to the technology advances in imaging) but we could not find the cause of the pain so my vascular surgeon opted to do it. My vascular disease (FMD) there is little known about it... it can occur in any of layers of the artery, it causes abnormal growth of the artery...and depending on which layer will determine type (Some types of FMD are more aggressive than others) Sure enough...when my vascular surgeon looked directly at my artery with ultrasound there was intimal tissue that had grown inside the graft. Not expected but the source of pain was found, and revision of my graft was done. Had I not had an underlying vascular disease this complication probably would not have happened. After the second surgery I was symptom free again for many years. Unfortunately the pain has returned, but I cannot keep having surgeries to investigate my graft. I am working on managing the pain currently. This will be a chronic condition for me, like others. Each of us are different, and success is in the eyes of the patient. In my eyes, both my surgeries were a complete success and I am appreciative of the compassion my vascular doctor displayed for me. Because of his skills and training I was able to have a many pain free years, and I know I will always have his support and guidance in the future. ❤️

Hello my name is Kelly and a year and a half ago I was diagnosed with a dissection of my SMA and Celiac ligament syndrome. I had bypass surgery for my SMA that took 9hrs & 47min. And this morning I am going back up to OHSU for more testing now to address my Celiac.