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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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The recovery is so different for each person. I only had nerve involvement and not problems with blood flow. I have always had low blood pressure and I think bc of that I don’t have pots. If you can’t get your pcp to order tests for pots, elder danlos, nutcracker, smas-I would look for a different pcp. I don’t think the GI Doctors order these tests, more likely pcp or a vascular surgeon. Your recovery will depend upon if you have any of these other issues, so it’s best to know what you’re going to be faced with. MALS surgery only fixes MALS pain, if neurogenic and blood flow. Hope this helps. Dr. Hsu and his whole team-medical and office help are amazing!
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1 ReactionHi Everyone,
I thought I would jump on here because I found the Facebook group overwhelming. I had surgery for MALS in 2015 (after the usual endless series of "normal" tests) in Seattle and had a couple of good years. And then I started having these random episodes where I'd wake up in the morning with the same pain in the same spot and some increasing nausea. Sometimes I'd even dry heave before it would finally calm down and start to get better. This had become more frequent and frustrating to deal with, probably every 3 days I'd have pain. Fortunately it's not anywhere near as severe as the attacks I would have in 2015 that sent me to the ER 3 times.
Anyway, last Dec I finally decided to seek help. My primary care doc really had no idea what to do with me and the GI specialist she referred me to gave the usual "try taking prilosec for 2 weeks and have a follow up" line, so I did a Google search and found Dr. Mallory Meyer in Denver who actually put MALS down as an area of specialization. Imagine that!
I've now had 2 tests done and the doppler ultrasound came back with the same result as 5 years ago: "Markedly elevated peak systolic velocities in the celiac trunk which worsens during end-expiration" including some signs of stenosis to the superior mesenteric artery (concerning). Then I had a CTA here in my hometown, which came back as normal, but I don't think they did it right as every time they asked me to breathe in deeply. I'm awaiting Dr. Meyer to review these results and get back to me.
In the meantime, I am wondering what experiences folks have had with a second round of surgery? I am suspecting they will make me do yet another test to confirm the results, but it seems pretty clear to me that the first surgery failed somehow. Hopefully Dr. Meyer, being personally interested in MALS, will be much more thorough and have a long-term solution for me so I can get on with my life without pain.
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2 ReactionsHi @jhmontrose
I haven't had my operation yet, but I can empathise with the pain; especially the pain on breathing. Do you think the median arcuate ligament was not cut back enough on the first operation?
Oh no-who did your first surgery? Was it open or lap? I’m so sorry. I had open surgery a year ago and am still having problems. Keep searching for answers. What tests are they doing?
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I think you may have miss-read my reply. I haven't had my operation yet. In the UK they cancelled all ops because of Covid-19. I got my phone call 5 days before I was to go in; that was last April.
I was asking about your oporation and the fact they may not have cut the ligament back far enough causing recompression.
Dr. Meyer actually suggested that as a possibility, in addition to not removing the nerve bundle. The vascular surgeon (Dr. Swee Tan) who worked on me in 2015 didn't file a report with the hospital, so they are requesting it. I had a thoracic surgeon finish a hernia repair for reflux and he filed the operative report.
Dr. Swee Tan, a vascular surgeon in Seattle. This time around, I've had a doppler ultrasound and a CTA. I have a feeling they are going to want to do another one to confirm the ultrasound results, possibly an angiogram. I had one of those in 2015 and it was not a fun experience.
@jhmontrose - I had the surgery January 2015. All well until 6 months later when symptoms recurred. CT angio showed the celiac artery still had not returned to normal shape after the ligament was removed- it had compressed the artery. A vascular surgeon placed a stent that has worked so far. The next step would be open surgery to repair the artery. They removed the nerve bundles in the first surgery.
I had been told at the first surgery it was a 50-50 chance it would work. There are many patients that require more surgery. This is not a condition that is promised to go away, unfortunately.
The CT angio that you had done locally probably was not done the way the specialists require.
Can I ask who your surgeon was and how you are doing now?
I have a very similar story to yours, I am curious how you are doing now and if you had surgery?