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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jayhawk57 | @jayhawk57 | Mar 23, 2020
In reply to @kariulrich "MALS/FMD/EDS COVID and Chronic Illness Post https://fibromusculardysplasia.blogspot.com/2020/03/self-quarantine-is-much-like-having.html" + (show)

Hi Kari,

Thank you for your post. You are such an encourager! I appreciate your passion for connecting with the FMD family and helping others in need.

I'm in quarantine for 2 weeks. I'm struggling with my emotionally health. Self care is a priority in these unknown days. Books, uplifting movies, gratitude journal, and devotional time is what helps me. Being alone I have to be creative. Praying for our country in the days to come.

Blessings, Prayers, Peace & Hope.

Linda A❤🙏

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redhead63 | @redhead63 | Apr 15, 2020
In reply to @kariulrich "HEDS?? Hypermobile EDS???!!! I have that. May I ask why you are not a surgical candidate?..." + (show)
@kariulrich

HEDS?? Hypermobile EDS???!!! I have that. May I ask why you are not a surgical candidate? Is it due to poor healing? I would love to hear more about your experience if you would not mind sharing it with me.

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I was told that I was to old, I didn’t loose any weight, sometimes I get stomach pain after eating but not always and I have HEDS. Apparently HEDS can interfere with the surgery. That is what I was told.

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Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Apr 16, 2020

@redhead63 - You are not to old at all! I was 70. I did not lose weigh either.

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mommy25k | @mommy25k | Apr 20, 2020
In reply to @astaingegerdm "@rb4hu - As far as I know an abnormal Doppler ultrasound should be confirmed with a..." + (show)
@astaingegerdm

@rb4hu - As far as I know an abnormal Doppler ultrasound should be confirmed with a CTA. Since my surgery and stent placement I had follow ups with CTA. However, at my last visit I was told that I can have ultrasound exams. It also depends on the institution doing the test. It is always good to get a second opinion. You would then bring the report on the Doppler and the CTA images. It is possible a vascular surgeon or GI surgeon would have more experience evaluating your brother. If possible, go to a major university medical center. I hope he will get relief soon. I know that pain.

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Was reading you post. What is a CTA? Also does MALS cause weird in the middle of the night pain? Pain so bad that one is nauseated and very dizzy?

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1 reply
Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Apr 20, 2020
In reply to @mommy25k "Was reading you post. What is a CTA? Also does MALS cause weird in the middle..." + (show)
@mommy25k

Was reading you post. What is a CTA? Also does MALS cause weird in the middle of the night pain? Pain so bad that one is nauseated and very dizzy?

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@mommy25k - CTA is a CT angiogram. Regarding night pain I never had that. There would pain after meals mostly.

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mommyofaudrey15 | @mommyofaudrey15 | Apr 26, 2020

Hi! I am new to the group and have been going thru a very rough time with my 15 year old daughter. She was actually born with Heterotaxy with Polysplenia. What that means is she has a right sided stomach, she had half the bowel at birth that you should have. Also no spleen. After multiple surgies to repair her bowels, bowel obstructions etc...they found 1 spleen at 4 months old. We did pretty great until about 1 year old and another round of partial blockages. Had surgery but was not a total blockage. Fast forward 14 years and out of the blue she started having horrible stomach pain. And it just gets worse and worse and worse. We have had CT, MRI, Ultrasounds, upper GIs...everything. We are under the care of peds GI and peds Surgeon in Portland Or. She had surgery Feb 14 2020 for a partial bowel obstruction. She literally felt better for 1 day. She has lost over 20lbs and eating is the most painful thing for her. She has missed so much school. But thanks to Covid we don't have it now. Today she had the worst episode yet. Stomach pain at a 10+ , vomiting and a ambulance ride to children's hospital. Thinking she is obstructed again....well come to find out she is not. Her bowels looked great. They gave her fentanyl for pain and for the first timenin 6 months my child was not in pain. I recently started taking my daughter to my acupuncturist who's daughter happened to have MALS. 4 years it took to figure it out. She has every symptom of MALS. Every single one. And being that her insides are different anyways I am open to anything. But We just feel like the docs think we are crazy! We advocate so hard for her and are fighting for her life. She is deteriorating. We brought up MALS to the ER docs and they are like never heard of it.
My acupuncturist told us of Doctor Shin Connecticut. We are in Portland Or and it's so far and with Covid and the doctors are just plain scared of my child. Just wanted to hear others stories, advice. We are struggling so hard. She is already so complicated but it's like pulling teeth for doctors to believe u. Thank u for letting me share.

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3 replies
mommyofaudrey15 | @mommyofaudrey15 | Apr 26, 2020
In reply to @mommyofaudrey15 "Hi! I am new to the group and have been going thru a very rough time..." + (show)
@mommyofaudrey15

Hi! I am new to the group and have been going thru a very rough time with my 15 year old daughter. She was actually born with Heterotaxy with Polysplenia. What that means is she has a right sided stomach, she had half the bowel at birth that you should have. Also no spleen. After multiple surgies to repair her bowels, bowel obstructions etc...they found 1 spleen at 4 months old. We did pretty great until about 1 year old and another round of partial blockages. Had surgery but was not a total blockage. Fast forward 14 years and out of the blue she started having horrible stomach pain. And it just gets worse and worse and worse. We have had CT, MRI, Ultrasounds, upper GIs...everything. We are under the care of peds GI and peds Surgeon in Portland Or. She had surgery Feb 14 2020 for a partial bowel obstruction. She literally felt better for 1 day. She has lost over 20lbs and eating is the most painful thing for her. She has missed so much school. But thanks to Covid we don't have it now. Today she had the worst episode yet. Stomach pain at a 10+ , vomiting and a ambulance ride to children's hospital. Thinking she is obstructed again....well come to find out she is not. Her bowels looked great. They gave her fentanyl for pain and for the first timenin 6 months my child was not in pain. I recently started taking my daughter to my acupuncturist who's daughter happened to have MALS. 4 years it took to figure it out. She has every symptom of MALS. Every single one. And being that her insides are different anyways I am open to anything. But We just feel like the docs think we are crazy! We advocate so hard for her and are fighting for her life. She is deteriorating. We brought up MALS to the ER docs and they are like never heard of it.
My acupuncturist told us of Doctor Shin Connecticut. We are in Portland Or and it's so far and with Covid and the doctors are just plain scared of my child. Just wanted to hear others stories, advice. We are struggling so hard. She is already so complicated but it's like pulling teeth for doctors to believe u. Thank u for letting me share.

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Dr. Shu

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lasirvent | @lasirvent | Apr 26, 2020
In reply to @mommyofaudrey15 "Hi! I am new to the group and have been going thru a very rough time..." + (show)
@mommyofaudrey15

Hi! I am new to the group and have been going thru a very rough time with my 15 year old daughter. She was actually born with Heterotaxy with Polysplenia. What that means is she has a right sided stomach, she had half the bowel at birth that you should have. Also no spleen. After multiple surgies to repair her bowels, bowel obstructions etc...they found 1 spleen at 4 months old. We did pretty great until about 1 year old and another round of partial blockages. Had surgery but was not a total blockage. Fast forward 14 years and out of the blue she started having horrible stomach pain. And it just gets worse and worse and worse. We have had CT, MRI, Ultrasounds, upper GIs...everything. We are under the care of peds GI and peds Surgeon in Portland Or. She had surgery Feb 14 2020 for a partial bowel obstruction. She literally felt better for 1 day. She has lost over 20lbs and eating is the most painful thing for her. She has missed so much school. But thanks to Covid we don't have it now. Today she had the worst episode yet. Stomach pain at a 10+ , vomiting and a ambulance ride to children's hospital. Thinking she is obstructed again....well come to find out she is not. Her bowels looked great. They gave her fentanyl for pain and for the first timenin 6 months my child was not in pain. I recently started taking my daughter to my acupuncturist who's daughter happened to have MALS. 4 years it took to figure it out. She has every symptom of MALS. Every single one. And being that her insides are different anyways I am open to anything. But We just feel like the docs think we are crazy! We advocate so hard for her and are fighting for her life. She is deteriorating. We brought up MALS to the ER docs and they are like never heard of it.
My acupuncturist told us of Doctor Shin Connecticut. We are in Portland Or and it's so far and with Covid and the doctors are just plain scared of my child. Just wanted to hear others stories, advice. We are struggling so hard. She is already so complicated but it's like pulling teeth for doctors to believe u. Thank u for letting me share.

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Hi mommy of Aubrey-please visit the MALS Awareness site on Facebook as there is a wealth of information there and lots of other moms with daughters that can be your support. This site guided me to find my diagnosis.

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