Median Arcuate Ligament Syndrome (MALS)

Thank you, Yes @lisa01 I am part of MALS PALS, but I do like the security of being here on Mayo connect vs Facebook when it comes to health information security. I was hoping that a group would start here for MALS. If we had enough patients here on Mayo Connect maybe they would consider doing a webinar in the future. I really like the format of this site. I have had Open Mals surgery twice, once for a bypass and then a revision several years later. If there is anyone interested in joining me here let me know.

Are you aware of a FB support group called MALS PALS. It is a support group for people suffering with MALS and their loved ones. It gives a tremendous amount of informstion of individual struggles, and various treatments and specialists that treat MALS. Highly recommended!!

Hello..I've attached a list if doctors in Canada, hope this helps. I'm in a Facebook group and it has been very helpful navigating through this process.

I need some help and guidance. Have a 20 year old daughter, live in Ontario Canada. She's been dealing with MALS like symptoms for 17 months. No one so far here, has been able to diagnose her and we've had some incorrect testing, which adds to the problem. All we need is a MALS experienced doctor to do more correct testing so we can possibly get a diagnosis. Like a DOPPLER US with correct protocols, MRA with proper protecols. We know she likely needs a plexus block but scared to do away from home. Anyone know of any doctors who could help with testing?

I need some help and guidance. Have a 20 year old daughter, live in Ontario Canada. She's been dealing with MALS like symptoms for 17 months. No one so far here, has been able to diagnose her and we've had some incorrect testing, which adds to the problem. All we need is a MALS experienced doctor to do more correct testing so we can possibly get a diagnosis. Like a DOPPLER US with correct protocols, MRA with proper protecols. We know she likely needs a plexus block but scared to do away from home. Anyone know of any doctors who could help with testing?

I’m in the same situation. I had open mals surgery Jan. 2020 with the ligament cut back to the spine and nerves addressed. I’m thankful that the mals pain is gone but 8 months after, I had a new ct and upper bowel series as I feel like someone has an exercise band around my upper epigastric area and throughout the day it just gets tighter and tighter. In Feb. 2021, I had Radio Frequency Ablation on both sides (one week apart) and it gave me relief for 8 weeks. Last month, I did a trial DRG pain stimulator and it took away 75-80% of the pain, so we know my problem is nerve damage. I’m scheduled on Nov. 4, for a DRG permanent stimulator. I just can’t handle a million tests again. I am 65.