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Median Arcuate Ligament Syndrome (MALS)
I am looking for other patients that have been diagnosed with Median Arcuate Ligament Syndrome. Although it is caused by compression of the celiac artery many people experience abdominal pain after eating, diarrhea, food avoidance. Usually the first doctors they see are GI doctors. It is a diagnosis that is made after everything else is ruled out. I am curious if anyone else has had surgery?
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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?
@melodie315 - Hi! I see you responded to a post by @kariulrich about surgery. The post you are referring to is from 2017 and Kari has not been active in the group for quite a while- don’t know if she gets the messages.
The hospital stay is usually not more than a couple of days, unless there is something special to monitor.
I stayed a couple of days extra after surgery because I had to be observed for something different. I felt fine when I left.
Good luck to you at Mayo! You will be in good hands. Please report back to us when you feel up to it.
I am having my surgery next week at Mayo can you tell me how long you were in the hospital after yours.
@jashetta - Hi and welcome to MALS group! I found this group after my MALS surgery 5 years ago. I was surprised to find so many of us.
The surgery for me was laparoscopic, but I was told that it may become open if there is a vascular problem. They were able to do surgery through laparoscopy. Recovery time was quick for me- the pain was gone and the only discomfort I had was due to the technical aspects of surgery.
I was 71 at the time- I also have floppy valves. You should check with your cardiologist if you need any special meds.
The very important question you should have for the surgeon is how many he/she has performed. Please get back to us with more details after you meet with the surgeon!
I just found out recently that I have to have this surgery done for MALs, I’m 29 married with 2 children and just want to know how was the coping after surgery? Will I be out of work for a long period of time? What can and can’t I do? I have so many questions, supposed to meet with the surgeon soon to go over everything I guess I’m just nervous, and also anyone have this surgery with valvular heart disease?
Incredible. Thanks for sharing
We just published my case. In a nut shell, hip dysplasia caused lumbar lordosis which caused my MALS. Had mal surgery at Mayo Rochester with relief of more than 30 symptoms. Hip arthritis worsened lumbar lordosis and MALS symptoms started to return. Hip replacement enabled me to do exercises to straighten my spine, which reduced MALS symptoms. This is the only article in the world that presents multiple management strategies for MALS symptoms. https://www.ejcrim.com/index.php/EJCRIM/article/view/1605/2056
that is exactly the article I was going to post....connection with entrapment and endocrine issues! Thank you! It was the only one I could find, but made me wonder if there is a greater connection. Since location of adrenals is fed by some of the vessels many people have issues with besides MALS.