Kari Ulrich, Alumna Mentor
@kariulrich
@kariulrich
Posts: 524
Joined: Jul 15, 2011
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?
Ingegerd Enscoe, Volunteer Mentor
@astaingegerdm
@astaingegerdm
Posts: 711
Joined: Mar 13, 2018
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.
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.
Dr. Shu
lasirvent
@lasirvent
@lasirvent
Posts: 59
Joined: Jan 31, 2019
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.
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.
Ingegerd Enscoe, Volunteer Mentor
@astaingegerdm
@astaingegerdm
Posts: 711
Joined: Mar 13, 2018
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.
@mommyofaudrey15 – Welcome to Mayo Clinic Connect! I had MALS surgically treated and I’m fine now. It is very rare and I didn’t know of anyone with it until I found this wonderful group! It is so hard watching your child in constant pain. She may very well have MALS. Pressure on celiac artery by a ligament from the diaphragm. She has been tested thoroughly, but to discover the abnormal intestinal blood flow secondary the compression of the celiac artery she would need a Doppler ultrasound to detect change in blood flow. To confirm an abnormal test a CT angiogram is used. A regular abdominal ultrasound and CT would not detect it. The pain is caused by decreased blood flow to intestines when they are digesting food. Same principle as angina of the heart with physical activity.
Liked by Colleen Young, Connect Director
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.
We are thank you so so so much!!!
lasirvent
@lasirvent
@lasirvent
Posts: 59
Joined: Jan 31, 2019
We are thank you so so so much!!!
I don’t know where you live, but we traveled from Arizona to Connecticut to have surgery with Dr. Hsu bc no other surgeon has the knowledge and experience that he has. Check his education, it’s impressive! I got so tired of going to different doctors and they all told me it’s IBS or abdominal migrane. I’m almost 4 months out and feeling better every day and no horrible mals pain.
Our acupuncturist brought up MALS to us 2 weeks ago when I took her there. We are desperate. And ever since we are on that track. His daughter had MALS and went to Dr. Hsu. She is 100% better. We are in Portland Or and there is nobody here that can do this vascular surgery. We are in the hospital right now under PEDS surgery because of other things she had going on but her bowels seem fine its got to be MALS. She has every symptom. It's freaking awful.
sclindajanssen
@sclindajanssen
@sclindajanssen
Posts: 25
Joined: Oct 08, 2018
I’m sorry to hear she is struggling. I had MALS with surgery at Mayo Rochester. 20+ symptoms disappeared. A year later had some return of symptoms at the same rate and time that my excess low back curved worsened because of hip dysplasia/arthritis. Found Dr Scholbach’s article about excess low back curve causing compression syndromes like MALS. My PT and I developed conservative management strategies and published them last week in a journal. Maybe something in this article may help your daughter. Not all MALS cases are caused by excess spine curve, but it’s worth a try before trying surgery. Hope you find some good help.
https://www.ejcrim.com/index.php/EJCRIM/article/view/1605/2056
Thank you! She does have that low back pain. She already has so many congential anomalies and they think that part of her bowel is not working from previous surgeries and that is what is causinf the pain right now. But who knows. You feel like you are in a hamster wheel just spinning around hoping someone will help. We have never seen her in so much pain. It's debilitating. She is on toradol and tylenol and something for SIBo and she is still at a 6 or 7 for pain. Since Covid is going on no elective surgies. As far as I am concerned this is not elective.
We think its MALS but nobody seems to want to order the testing for it.
lasirvent
@lasirvent
@lasirvent
Posts: 59
Joined: Jan 31, 2019
Thank you! She does have that low back pain. She already has so many congential anomalies and they think that part of her bowel is not working from previous surgeries and that is what is causinf the pain right now. But who knows. You feel like you are in a hamster wheel just spinning around hoping someone will help. We have never seen her in so much pain. It's debilitating. She is on toradol and tylenol and something for SIBo and she is still at a 6 or 7 for pain. Since Covid is going on no elective surgies. As far as I am concerned this is not elective.
We think its MALS but nobody seems to want to order the testing for it.
Have you been to a Vascular Surgeon? He’s the one who ordered my CT and Doppler Ultrasound of Abdomen and pelvic.
sclindajanssen
@sclindajanssen
@sclindajanssen
Posts: 25
Joined: Oct 08, 2018
While MALS is listed as a rare disease, Dr. Scholbach and I do not believe MALS is rare; it is uncommonly diagnosed because it is unknown.
Liked by Colleen Young, Connect Director, lasirvent
chicken
@chicken
@chicken
Posts: 18
Joined: Dec 11, 2018
Thank you! She does have that low back pain. She already has so many congential anomalies and they think that part of her bowel is not working from previous surgeries and that is what is causinf the pain right now. But who knows. You feel like you are in a hamster wheel just spinning around hoping someone will help. We have never seen her in so much pain. It's debilitating. She is on toradol and tylenol and something for SIBo and she is still at a 6 or 7 for pain. Since Covid is going on no elective surgies. As far as I am concerned this is not elective.
We think its MALS but nobody seems to want to order the testing for it.
Hello! I am so sorry that you are going through such a rough time!
if you are looking for a pediatric MALS surgeon, there is an amazing amazing one at Cincinnati Children's Hospital, Dr. Nathan. (https://www.cincinnatichildrens.org/bio/n/jaimie-nathan). He has a very unique surgery method, and has a very high sucess rate. He is very deliberate and thorough, so rules out everything before surgery, to make sure that the surgery is necessary and will really help treat the symptoms. I can personally vouch for him, he saved my life.
Liked by Colleen Young, Connect Director
@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?