Median Arcuate Ligament Syndrome (MALS)

Hi @melodie315

Let us know how you are getting on after your surgery. I would certailny like to know as I am waiting for my surgery over here in the UK.

Hi @jashetta

I hope the surgery went well. Let us know how you are doing.

I am 3 years into this nightmare and finally may have found a diagnosis of Mals. I am awaiting a diagnostic celiac plexus block. I am really overwhelmed by all the different approaches to possible surgery and wondered if there is a list of drs that treat both the neurogenic AND vascular parts to mals? I also am very concerned that I have other compressions and am hoping to find resources of who to see for evaluation of possible May-Thurner, SMA and pelvic congestion. I feel like it makes sense to get the whole picture before going in for Mals surgery. Thanks for responding!

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!

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?

Hi @tlkc1

The best advice I can give you is to read this thread from the beginning. There is a wealth of information in the postings answering many of the questions you may have or not even thought about. There are helpful tips on what to ask doctors to different ideas on managing pain. In one post I talk about MALs and the affect on Mental Health. There is a lot to get through but it was the first thing I did when I joined and I learned a lot. Getting the whole picture will help you physically and mentally going forward.

You can bring others into your post by typing @ then their screen tag, their screen name should pop up in a box for you to select.

@sclindajanssen has a lot of experience and knowledge on MALs, I'm just reading her report on 'Interprofessional Management of Median Arcuate Ligament Syndrome Related to Lumbar Lordosis & Hip Dysplasia.'

@kariulrich who started the thread also has in-depth knowledge of MALs, but I am unsure if she is still receiving alerts for this thread.

And I am here to help.

I will read through it, thanks so much!

Hi @tlkc1

You mention blood pressure something which I think is very important to keep track of and talk to your physician about. I'm not sure if you are taking any pain medication, but what you take can have a marked effect on your blood pressure.

I was on high dose morphine for over 8 years with the pain specialist putting me on transdermal patches. In the last 2 years my blood pressure was bottoming out. I was suffering some severe cardiac symptoms with chest pains that sent me to A&E on several occasions. Last year my average blood pressure was 85/45, the lethargy was brutal and I found myself passing out after eating something as basic as breakfast cereal.

I decided last year to take myself off morphine and find other ways of managing the pain. The cardiac symptoms disappeared and my BP improved too. I still get low BP but I don't pass out quite as often. I have compression in more than one artery which my surgeon said he will try and repair.

If you are concerned talk about it with your MALs team and Dr Hsu. Just remember you are the patient you have a right to be heard.

I am not on any meds currently as nothing helped and all the different things we tried made symptoms worse. I totally related to the almost passing out while eating! I am hoping once I have the diagnosis it will be easier to be taken seriously. Thanks for the help