Median Arcuate Ligament Syndrome (MALS)

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

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!

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 @jashetta

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

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 @andiksu

Hope you are well. I read your post and can sympathise with your situation. The first thing I would say to you is 'DON'T GIVE UP,' keep the dialogue going. If I was to tell you the number of times I came against roadblocks just to get to my diagnosis this post would be pages long. Short version is it took nearly 8 years to get a diagnosis. On that journey I was accused of being Mentally ill, over reacting, over sensitive to minor pain, even having Munchausen. Before being diagnosed the pain specialist was pushing for me to get a spinal cord stimulator. If I agreed that would have been the end of any investigation into the severe pain I was experiencing. I knew there was something causing the pain even though the doctors said I had every test to show there was nothing wrong.

I didn't give up and declined the stimulator. I had just started to make the connection to intensity of pain and foods eaten. I was under the care of a gastroenterologist and seeing other specialists too. I mention the food connection to all, it was an immunologist who suggested an angiogram to look for compression. He said it was too rare and highly probable it wasn't it. It took four months of fighting with the gastro doc just to get the angiogram who kept telling me it was a waste of time and money. In the end he yielded, probably to shut me up, only to find I had MALs. He had no idea how to treat it so I searched for surgeons who do. There were only 4 surgeons in the whole of the UK that had any experience, the closest being in a city 2 hours away. He was brilliant, I had a few consultations in 2019 and was booked in for the surgery first week of April 2020.

I was relieved, not only did I have a diagnosis, but I had surgery booked, which could relieve the relentless pain I was feeling. I had everything planned, how I was to get there, staying with family in the city after the surgery and how I would get back. 5 days before the surgery I got a phone call saying the surgery had been cancelled. Covid-19 had hit and taken over.

Since April I've been battling on. If there were stages to MALs I'm guessing I am in the final stages. The fight between nutrition and pain management is always a problem especially if there has not been any surgery. There were certain foods I could eat that didn't send the pain into overdrive; however, week to week the list grew smaller. Now there is nothing left on that list.

My battle now is reducing the weight loss to its minimum, but it is extremely hard as I have lost 6kg in 3 months. I won't give up, must keep going until I am able to have the surgery.

Don't stop asking for help, the medical industry is focused on one thing at the moment but it will not always be. Things do and will get better even if it is not at the pace you are expecting. There are many stories in this post, many similar to yours and some more positive. I would consider @kariulrich a positive story. It was inspirational to me as I had seen how @kariulrich had regained some of her life after surgery and was doing some of the things I would love to do like horse riding.

Keep us informed

Mark

Hi tlk @tlk

I believe the group is still active although it has been a good few months since I was on. Is there a question you have for the group?

Mark

Is this group still active?

Hi @andiksu, I wanted to welcome you to Mayo Clinic Connect and tell you that I completely understand your anger and frustration. The last word you want to hear when you are sick or in pain is "Can't"!

Please be assured that Mayo Clinic would want you to feel comfortable and confident about your review for care and your experience with Mayo. I’d sincerely encourage you to visit the Office of Patient Experience website https://www.mayoclinic.org/about-mayo-clinic/patient-experience Here you will find the number below and speak to an agent who will be your advocate for making sure your needs are heard.

Mayo Clinic Office of Patient Experience
Phone: 844-544-0036 (toll free)
Fax: 715-838-5999
Email: opx@mayo.edu

@andiksu, you will notice that I did move your discussion to a long standing conversation about MALS so that you could find other support from patients who have the same diagnosis. Will you let me know if you contact the office of patient experiences?

I have sent all my records to be reviewed my the MALS team. The only images I could not get were my mesentaric ultrasounds (2 different dates). My previous surgeon does not keep ultrasound images for some strange reason. They have the reports, several CTA images, a recent angiogram set of images. All show recompression (I had surgery in Nov 2018) and I had a block done last week which was successful. I called the triage for vascular last week and explained it is impossible to get the ultrasound images. They called me today to tell me they will not be able to review my case because of these images not being available. They have everything else they need that shows recompression and because of ultrasound images they won’t even review the case? Is there anything I can do? Is this the way the Doctors at Mayo treat those who need their help? I am angry and frustrated and appalled. Should I just move on?