1. < Digestive Health

Median Arcuate Ligament Syndrome (MALS)

Posted by Kari Ulrich, Alumna Mentor @kariulrich, Dec 26, 2016

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?

Interested in more discussions like this? Go to the Digestive Health Support Group.

lety83 | @lety83 | Feb 1, 2022
In reply to @astaingegerdm "My surgeon gave me a 50-50 success rate. After 5-6 months the pain returned. I contacted..." + (show)
@astaingegerdm

My surgeon gave me a 50-50 success rate. After 5-6 months the pain returned. I contacted their office and they scheduled a CT angiogram. It showed that the artery had not been able to expand to normal size- the pressure from the ligament had caused a more or less abnormal deformity. I saw a vascular surgeon too who recommended placement of a stent. They did not have to do a laparoscopic surgery for this, but went through an artery to place the stent. Follow up scans were clear.
I had to be on blood thinners for a while.
It was explained to me that if stent didn’t work they could perform a bypass.
I don’t know the time one has to wait to see if surgery was successful. There could still be swelling in the area from the surgery.
They should do an ultrasound or CT angiogram to check the artery.
If there is a problem you should see a very good vascular surgeon.
I have seen a therapist for quite a while now- I started going because I had been sick for such a long time and I was overwhelmed and depressed.

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Thank you. I emailed my doctor to let them know what’s going on. They want me to see a behavior medicine team. I wonder if any one has done this. I don’t think they want me to go any further than this at the moment. Sometimes I feel the doctor’s don’t realize what we are personally going through.

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lety83 | @lety83 | Feb 1, 2022
In reply to @astaingegerdm "@jhmontrose - Such great news!! Such a shame it took 3 surgeries to repair- how did..." + (show)
@astaingegerdm

@jhmontrose - Such great news!! Such a shame it took 3 surgeries to repair- how did you find this surgeon?
I’m so happy for you!

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100 MALS surgeries! My surgeon here in Chicago has done 10 and out of those 10 only 3 got better. He wants me to see behavior medicine team now. But in the meantime I don’t want to be in pain. My appointment with them isn’t till May!

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Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Feb 1, 2022

@lety83 - Oh no - I have to correct myself again. What I meant to say was that the surgeon told me the odds of success was 50/50! He had only performed 5.. He was the chief of Surgery at a University Hospital with many years of experience.
I suppose it doesn't hurt to see a behavioral medicine team.
I agree with you- most doctors don't know what it's like for the patient. Even the family doesn't always understand even if they see you in agony.

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jhmontrose | @jhmontrose | Feb 2, 2022
In reply to @lety83 "100 MALS surgeries! My surgeon here in Chicago has done 10 and out of those 10..." + (show)
@lety83

100 MALS surgeries! My surgeon here in Chicago has done 10 and out of those 10 only 3 got better. He wants me to see behavior medicine team now. But in the meantime I don’t want to be in pain. My appointment with them isn’t till May!

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I have learned a LOT about MALS since 2015 when this all started for me. What is quite apparent to me now is that this is a complicated surgery and a complicated problem. But MALS is real, and when the compression is fully relieved people do get much better. I had my revision surgery 2 weeks ago and I have gone from 120 lbs to 126 in that time, and I just hope that continues. I had gotten so thin, I was thinner than I was in high school. At this point, you might be better off reaching out to another MALS surgeon who has a lot more experience. A psychiatrist can help you in the meantime. I started seeing one last summer and tried a few medications. First we tried mirtazapine which is an antidepressant that stimulates the appetite, but it had intolerable side effects for me. Eventually I tried a combo of gabapentin and nortriptyline and this eventually improved my sleep, anxiety and appetite enough that I was able to get through the next few months of surgical consults.

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akitamama | @akitamama | Feb 6, 2022

Hey. I was recently diagnosed. My doctors are discussing my options. I also have FMD and EDS. I look forward to learning more about MALS and being of assistance, if needed.

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Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Feb 7, 2022

@akitamama - Welcome to Mayo Clinic Connect!
Our MALS group have had many discussions on the topics of diagnosis, surgery, recovery and complications. You should be able to check the recent postings to start with.
Can you tell us more about your symptoms and how you were diagnosed!
Will your other conditions have a role in the treatment decision for you?

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kayemwatson | @kayemwatson | Feb 15, 2022
In reply to @kariulrich "I am so sorry to hear this and I too would be upset. You need to..." + (show)
@kariulrich

I am so sorry to hear this and I too would be upset. You need to be seen and if there is someone in Arizona that is familiar with MALS you should not have to travel to Rochester. I did look at a list of physicians from another support group (MALS/PALS on Facebook). These are peer recommended doctors and found someone in Arizona:
Richard Harding: http://www.azassociatedsurgeons.com/richard-harding.html
It looks like he does lap not open surgery, that may be a start? I do not know him and again it is a from a patient list.

I hope that Mayo gets this Medicare situation figured out. It is frustrating for many patients.
https://www.facebook.com/groups/105633382202/10155264954027203/

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I encourage you to join the MALS Pals Facebook group. THey have a list of doctors and surgeons familiar with MALS listed by state. They also have a list of members who have MALS and listed by state. This has been helpful to me in trying to find doctors and surgeons. Hope this helps!

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rbertolino85 | @rbertolino85 | Feb 18, 2022
In reply to @astaingegerdm "Ralph, I understand now what a terrible situation you are in! 22 years! I asked my..." + (show)
@astaingegerdm

Ralph, I understand now what a terrible situation you are in! 22 years!
I asked my director, Colleen Young, to give you more information on how to get into Mayo. Arizona appears to be harder to get into. Please consider Mayo in Rochester, MN and in Jacksonville, FL. I have been to both. Superb.

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My gastroenterologist. finally sent Mayo Arizona an email today requesting admittance to their clinic. I wait and wait, doctors are so unfamiliar with this disease they waste valuable time going in circles as my life may not survive another necrotic intestinal surgery. I feel since l gathered all the-research and did a presentation, l feel neglected, as many of you have expressed. Now l am afraid l will have to wait in a long line, even though lm in critical stage now. Can not get out of bed or take care of myself at this time. Does any one have advice to some how get Mayos attention ? I may have organ failure , this is next, other than another necrotic intestinal failure. l have already endured this emergency surgery that saved my life. I do not want to die from sepsis either. lm loosing hope, it’s been 22 years now in bed, waiting. Please forgive me for my sour attitude.

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Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Feb 19, 2022

Ralph, I’m glad your doctor contacted Mayo Arizona. I assume they will contact your doctor and then you will find out what’s next.
I hope you are followed closely now by your current medical team.
Don’t worry about your “sour attitude “! You have the right to be upset.
Hope you hear soon!

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rbertolino85 | @rbertolino85 | Feb 24, 2022
In reply to @kayemwatson "I encourage you to join the MALS Pals Facebook group. THey have a list of doctors..." + (show)
@kayemwatson

I encourage you to join the MALS Pals Facebook group. THey have a list of doctors and surgeons familiar with MALS listed by state. They also have a list of members who have MALS and listed by state. This has been helpful to me in trying to find doctors and surgeons. Hope this helps!

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2-24-2022. I’m Ralph Bertolino, can you direct me where l can find the list of Drs. regarding mals, in facebook? l can not find it. I live in the L.A. Orange County of California. Thank you ,Ralph

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