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Median Arcuate Ligament Syndrome (MALS)

Digestive Health | Last Active: 1 hour ago | Replies (1229)

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@lasirvent

Hi, I was diagnosed with Mals in Sept. 2019 after 16 years of pain, hundreds of tests and suffering. After my pain doctor told me that I needed to pursue finding a diagnosis bc he could no longer help me, I did my own research and it led me to MALS Awareness group on Facebook. They are a wealth of information and support. I probably would not be her without their encouragement and educating me. I had Mals surgery a year ago, and knew immediately that the sharp, piercing pain in my epigastric area was gone. It’s really important to make sure you have a ct scan, duplex ultrasound and be checked for gallbladder, Elder Dahnlos, Smas, Nutcracker and pots. These are very common issues to have alongside of MALS. The MALS surgery only releases the ligament. I had open surgery with Dr. Hsu in Stamford, Connecticut as he was the surgeon who had the most experience and education at the time. Now, thank God there are several other doctors who are doing the surgery. I flew from Arizona to Connecticut and would do it over again! Best wishes!

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Replies to "Hi, I was diagnosed with Mals in Sept. 2019 after 16 years of pain, hundreds of..."

Hi @lasirvent

Thanks for sharing your story on the Mayo site. I don't do Facebook (and there are others too), in fact I don't do any of the social media so this was the only place I could get information. I'm in the UK and I know of Dr Hsu, as he is mentioned a number of times throughout this thread. Your reply is extremely helpful and helps sufferers and their families gain knowledge and an understanding of the outlook after an operation. I hope you don't flyby and you stay connected, you have the knowledge to help those going through MALs.

Maybe you have advice for @tlkc1

Thanks so much for your reply! I am so sorry you went through this pain for 16 years! I can’t imagine. I have had a consult w dr Hsu and he has ordered the block. I am concerned about getting checked for the conditions you mentioned, I don’t have a super helpful pcp or gastro, they all think I’m nuts. Can you tell me what type of dr manages Ed and other compressions?

How are you feeling now, was the recovery as bad as I’ve read? It seems like a lot of people end up worse afterwards, especially if they have other compressions unaddressed. My other concern is that I have had consistently low blood pressure through this whole time, but no one seems to worry about it even though I’m extremely short of breath and feel faint most of the time. My velocities were low 100s and doubled to over 200 on expiration but from what I understand dr Hsu does not address the blood flow at all. Do people usually have both nerve and blood flow involvement and the ones that do have both do they both need to be surgically addressed?