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 group.

@jhmontrose

Hi all, I just wanted to give a positive update. I had a 3rd (yes 3rd!) MALS surgery last week with Dr. Sprouse in TN, who has done around 100 MALS surgeries. He did a catheter angiogram and found that there was a remaining spot of compression on my celiac artery, almost completely blocking it. His opinion is that the prior surgeons did not follow the entire course of the artery from where it branches off the aorta and all of its branches.. My stomach has been 100% better and I feel like I can breathe deeply again. The incision pain is my only issue since surgery. Hopefully this will be lasting relief, but we will keep following up with ultrasound to be sure the artery stays open. My advice to anyone going through MALS the first time or still not getting relief: keep pushing for answers and work with an experienced MALS surgeon.

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@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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@lety83

I just had surgery on November 19. As of now the nausea and throwing up have got better. But I’m still experiencing a lot of pain after I eat. Has an one else had surgery? Where do I go from here?

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@lety83 – Have you had follow up visit after surgery? I don’t think you should have pain after eating at this point. It is possible that your celiac artery is still not fully open.
It happened to me after 6 months- the artery was still deformed from the ligament pressure. A stent was placed and I have been fine since then.
You probably should contact the surgeon to make sure blood flow is good.

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@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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I found him through MALS Pals on Facebook. That group has a list of MALS surgeons. Also I started searching the group history for surgeons who had done revisions. I found mentions of Dr. Sprouse as being a "scar tissue expert" which I knew would be a major issue reoperating on me. But it was really his patients, one in particular who encouraged me to see about an appointment. I ended up consulting 4 surgeons and he was the one I felt most comfortable with. At this point I'm hoping all I ever need in the future is a stent, and he will be doing ultrasounds to be sure the artery has stayed open.

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@lety83

I just had surgery on November 19. As of now the nausea and throwing up have got better. But I’m still experiencing a lot of pain after I eat. Has an one else had surgery? Where do I go from here?

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Hi, I also had an incomplete recovery from MALS surgery last year. I would recommend you reach out to your surgeon and let them know you're still experiencing symptoms. If this continues, you may need to get repeat ultrasound to see if the artery is open or recompressed.

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@astaingegerdm

@lety83 – Have you had follow up visit after surgery? I don’t think you should have pain after eating at this point. It is possible that your celiac artery is still not fully open.
It happened to me after 6 months- the artery was still deformed from the ligament pressure. A stent was placed and I have been fine since then.
You probably should contact the surgeon to make sure blood flow is good.

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Doctor said, to wait 6 months to see if surgery worked. He explained that only 3 out of the 10 he performed surgery on has seen relief. I had laparoscopic surgery in November. I am currently trying acupuncture. Doctor wants me to see psychiatrist now because I’ve been sick for a year. What is the purpose of the stent? Was that surgery? Sorry I’m new to all this. So after 6 months you got sick again? What were you’re symptoms?

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@jhmontrose

Hi, I also had an incomplete recovery from MALS surgery last year. I would recommend you reach out to your surgeon and let them know you're still experiencing symptoms. If this continues, you may need to get repeat ultrasound to see if the artery is open or recompressed.

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Thank you, I did informed him that I’m still in pain after I eat. He said, wait 6 months after surgery to see if surgery worked. Out of his 10 patients he performed surgery on only 3 got better. How long after surgery did your symptoms return? I am currently trying acupuncture. I’m can’t take this anymore. I want to be able to eat normal without getting pains. I’m tired of smoothies. So are you 100% better now?

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@lety83

Doctor said, to wait 6 months to see if surgery worked. He explained that only 3 out of the 10 he performed surgery on has seen relief. I had laparoscopic surgery in November. I am currently trying acupuncture. Doctor wants me to see psychiatrist now because I’ve been sick for a year. What is the purpose of the stent? Was that surgery? Sorry I’m new to all this. So after 6 months you got sick again? What were you’re symptoms?

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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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@lety83

Thank you, I did informed him that I’m still in pain after I eat. He said, wait 6 months after surgery to see if surgery worked. Out of his 10 patients he performed surgery on only 3 got better. How long after surgery did your symptoms return? I am currently trying acupuncture. I’m can’t take this anymore. I want to be able to eat normal without getting pains. I’m tired of smoothies. So are you 100% better now?

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Yes- I’m 100% better now!

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@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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@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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@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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@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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