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?

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Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Feb 20, 2019
In reply to @kariulrich "My incisional pain lasted 6 months it still gets painful to touch at times ( I..." + (show)
@kariulrich

My incisional pain lasted 6 months it still gets painful to touch at times ( I believe this is nerve damage, nothing I cant handle but it affects the clothing I wear). What helped me with my incisional pain is using a small pillow to splint my incision. I used it when I walked for at least a month maybe two. I used it also in bed for at least 6 months to help support my abdominal muscles. Gas pains... the dreaded gas pains, oh yes they were not fun. You are doing the right thing slow eating, chew food well, small frequent meals. For pain at home I managed with narcotics to be honest I cant even remember the name of the one I was on post op, but I used extra-strength Tylenol for pain. I have to be careful with Advil because I have a vascular disease that affects my kidneys so I can use it just very sparingly. What helped all my symptoms was walking three times a day short distances... even just around the house. I was so happy to be home, my recovery went so much better once I was discharged. Better sleep, better food... and my family made all the difference in the world. I know the recovery is so long!!! Just keep asking questions... it has been about 4 years now since my last surgery but I will try my best to answer your questions. This may sound silly... I did not wear a bra for at least 6 months, I wore a tank top that was loose on my abdomen. Some patients like abdominal binders, you can get them at any drug store. For me they were uncomfortable. My thoughts are with you!! You will get through this, you will start noticing bigger strides of progress at about 3-4 month post op. Hang in there

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I just want to add a comment about pain meds. I had laparoscopic surgery, but had significant internal pain. Gabapentin worked best for me. Healing takes a long time.

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davemazon | @davemazon | Feb 28, 2019

Hi, All. I've been diagnosed with severe narrowing/stenosis of the celiac artery. Today the Thoracic physician said he is still not sure it is MALS because I'm not losing weight. I'm actually in the hospital now, admitted last night from ED. I was sent to ED by PCP, who was concerned my pain could mean ischemia/organ damage given severity and duration I've been in this state. I have many of the symptoms mentioned in this forum - severe abdominal pain (both sides but predominantly left, under/around ribs and radiating to back) nausea lasting for hours and days, shortness of breath, weakness, chest pain, headaches. A CT from an ED visit in September of 2018 revealed stenosis and poststenotic dialation. What a journey to get to this point. Its been an uphill battle, really. I've had to be my own advocate - reading, researching, insisting on being seen and being taken seriously when dismissed and pushing for more testing when something was ruled out. Most important is to maintain hope. I really want to consult another physician/Team. Can anyone give some recommendations? I believe UPMC is the next closest health system to me. Thanks!

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sciograndma | @sciograndma | Mar 1, 2019

I have not been diagnosed with MALS...but everything else has been ruled out. Is there anyone on this site from Western NY, and if so, what Dr do you use? I am desperate!!! Insurance may be an issue because MALS is so rare. I have not been able to eat w/out extreme pain after for 5 months and have lost about 30 pounds since then. I need a Dr who is knowledgeable!! Thank you, and God bless!

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Kari Ulrich, Alumna Mentor | @kariulrich | Mar 1, 2019

There is Facebook group that has put together a list of doctors that they use called MALSPals. I will see if I can get the listed posted here...I have not had much success in the past. On another note, there is a nonprofit working towards better care for patients. In full disclosure I am on the board, but I will continue to volunteer here. I just want everyone to know we are making progress together! The foundation is called The National MALS Foundation, our website will be up soon.

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techchick1025 | @techchick1025 | Mar 1, 2019

Dr Hsu in Connecticut!

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Kari Ulrich, Alumna Mentor | @kariulrich | Mar 1, 2019
In reply to @davemazon "Hi, All. I've been diagnosed with severe narrowing/stenosis of the celiac artery. Today the Thoracic physician..." + (show)
@davemazon

Hi, All. I've been diagnosed with severe narrowing/stenosis of the celiac artery. Today the Thoracic physician said he is still not sure it is MALS because I'm not losing weight. I'm actually in the hospital now, admitted last night from ED. I was sent to ED by PCP, who was concerned my pain could mean ischemia/organ damage given severity and duration I've been in this state. I have many of the symptoms mentioned in this forum - severe abdominal pain (both sides but predominantly left, under/around ribs and radiating to back) nausea lasting for hours and days, shortness of breath, weakness, chest pain, headaches. A CT from an ED visit in September of 2018 revealed stenosis and poststenotic dialation. What a journey to get to this point. Its been an uphill battle, really. I've had to be my own advocate - reading, researching, insisting on being seen and being taken seriously when dismissed and pushing for more testing when something was ruled out. Most important is to maintain hope. I really want to consult another physician/Team. Can anyone give some recommendations? I believe UPMC is the next closest health system to me. Thanks!

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Thinking of you @davemazon, not everyone looses weight with MALS. Your PCP sounds like he is on top of things as there is a concern for ischemia. Have they considered doing a cath angiogram? At this point it maybe something to consider... there is something called IVUS... it is an ultrasound inside the arteries and they can take pressure readings. You may want to look into that, I believe there is even better technology than IVUS now. Ask for a consult with interventional radiology.

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1 reply
davemazon | @davemazon | Mar 3, 2019
In reply to @kariulrich "Thinking of you @davemazon, not everyone looses weight with MALS. Your PCP sounds like he is..." + (show)
@kariulrich

Thinking of you @davemazon, not everyone looses weight with MALS. Your PCP sounds like he is on top of things as there is a concern for ischemia. Have they considered doing a cath angiogram? At this point it maybe something to consider... there is something called IVUS... it is an ultrasound inside the arteries and they can take pressure readings. You may want to look into that, I believe there is even better technology than IVUS now. Ask for a consult with interventional radiology.

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Thanks @kariulrich   A MALS MRI protocol was developed and implemented specifically due to my case and for use with future potential ones, as nothing of the like existed within our organization prior.  The MRI was on Wednesday morning of this past week and lasted around two hours. Friday evening, the Vascular surgeon discussed results with me.  This second round of imaging reconfirmed initial CT indicating celiac compression. I was discharged Saturday midmorning. Tomorrow I plan to research other institutions with physicians specializing in our shared disease state and go from there.  My symptoms have become progressively more acute over course of the past several months. My hope is to receive treatment by a specialist Team soon.

Thanks for your time and support!

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Kari Ulrich, Alumna Mentor | @kariulrich | Mar 6, 2019

Hi everyone! Hope this finds you all more that just surviving today. MALS PALS just updated the Doctors List Today! So grateful to Robin Schrader for keeping it updated regularly.

Shared files

UPDATED MALS SURGEON LIST 3 (UPDATED-MALS-SURGEON-LIST-3.25.18.pdf)

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davemazon | @davemazon | Mar 6, 2019

I joined MALS PALS and so glad I did! There's comfort in sharing in our common malady and potential treatments - as a Team. Thank you!

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