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?

Interested in more discussions like this? Go to the Digestive Health Support Group.

Moderator
Lisa Lucier, Moderator | @lisalucier | Aug 24, 2018

I know that many of you know @kariulrich from her involvement in discussions here on MALS. I thought you might like to see a feature story on her in today's Mayo Clinic Connect Member Spotlight: https://connect.mayoclinic.org/newsfeed-post/excited-to-find-others-with-my-rare-disease-meet-kariulrich/.

REPLY
annief | @annief | Aug 12, 2018
In reply to @jmmb "Hello @annief . Sorry to hear you are not feeling well. MALS is a really tricky..." + (show)
@jmmb

Hello @annief . Sorry to hear you are not feeling well. MALS is a really tricky and complicated disease/diagnosis. I don't think any two people are the same. Usually all have general similar symptoms like you have described. My MALS was found by accident. I have always had stomach issues since I was little. Told IBS and had ulcers. About 4 years ago, the pain was so bad I decided to go to the er just for pain meds or something. They insisted on ct scan. The dr. came out and asked if I knew that my arteries were narrowed. I was like I don't know. He said I should see a vascular surgeon. I told my pcp an he got me into a University teaching hospital and with the chief of vascular surgery. I had no idea what was going on. They did the doppler and said my velocities in the celiac and SMA were literally off the charts and I needed surgery right away. I was a teacher and asked to wait for spring break he said no. I thought ok, I took a month off. Wow was I wrong. Now of course mine was different. I had two arteries and they were severely compressed and it was a mess and about 8 hr surgery. I did feel better after. Long difficult recovery, plus a lot of personal stresses, family deaths, which didn't not help. But my arteries were good. However, 5 months later they were narrowing again. My surgery was Feb. 2014, In Sept. 2015 I got stents put into each artery. It would have been best to do a bypass, but I physically could not handle that. I did feel relief again. Then it came back. I also had SIBO, which is a big issue to watch for. I was getting confused of what was what. If that is caught and taken care of, I think it would be fine. Mine wasn't. Oct. 2017 I had a balloon in the celiac. For me this will be a life long thing. That doesn't mean for you. I have heard people have open surgery and in a month feel a lot better and continue on that path. There are many that have had laparoscopic an out of the hospital in like 3 days and done great. It depends on the situation. If you are unsure I would definitely get a second opinion. I think, personally, it should be a vascular surgeon. I have not had luck with GI drs even acknowledging that MALS is causing damage to the stomach. I have heard though some GI drs were great in diagnosis of it.
Sorry not much help. As for eating, I used to try to stay away from certain foods. Honestly it didn't matter. Just depended on the day and how bad my symptoms were. Water is really hard for me. Weird I know, but if I am really thirsty and drink more than a couple of sips, it hurts so bad, even now. I would definitely eat SMALL MEALS and more often throughout the day. If you have a problem with eating, and one day something sounds good and is working, eat it all day, who cares as long as you get something in you.

Well good luck to you. Oh and I was 47 when I was diagnosed and my surgeon said I was young, but I don't think he realized it was truly MALS until he went in and saw the diaphragm compression. I don't think age matters so much as the shape and health you are in. Feel free to ask any questions. Don't know if this helped any....

Jump to this post

He did not say. Maybe he thinks we will know if I get better and go from there. It is my understanding the surgery is the only treatment. The ligament has to be released. I am going to ask him about the Doppler ultrasound. Am also going to see another surgeon so I will see what his recommendation is. Your recommendation to eat small amounts is appreciated. It is easy to forget when you are hungry.

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Aug 12, 2018

Hello @kariulrich

I have had upper digestive surgery (not for MALS) and I also have problems with restrictive garments. Belts, waistbands, etc. I usually buy a little bigger than what I need and then often loosen it or take it off when the constriction gets uncomfortable. I also get low-rise pants, etc., when I can find them.

Digestive tract surgery leaves a lot of problems that you wouldn't think about.

Teresa

REPLY
Kari Ulrich, Alumna Mentor | @kariulrich | Aug 12, 2018
In reply to @jmmb "Hello @annief . Sorry to hear you are not feeling well. MALS is a really tricky..." + (show)
@jmmb

Hello @annief . Sorry to hear you are not feeling well. MALS is a really tricky and complicated disease/diagnosis. I don't think any two people are the same. Usually all have general similar symptoms like you have described. My MALS was found by accident. I have always had stomach issues since I was little. Told IBS and had ulcers. About 4 years ago, the pain was so bad I decided to go to the er just for pain meds or something. They insisted on ct scan. The dr. came out and asked if I knew that my arteries were narrowed. I was like I don't know. He said I should see a vascular surgeon. I told my pcp an he got me into a University teaching hospital and with the chief of vascular surgery. I had no idea what was going on. They did the doppler and said my velocities in the celiac and SMA were literally off the charts and I needed surgery right away. I was a teacher and asked to wait for spring break he said no. I thought ok, I took a month off. Wow was I wrong. Now of course mine was different. I had two arteries and they were severely compressed and it was a mess and about 8 hr surgery. I did feel better after. Long difficult recovery, plus a lot of personal stresses, family deaths, which didn't not help. But my arteries were good. However, 5 months later they were narrowing again. My surgery was Feb. 2014, In Sept. 2015 I got stents put into each artery. It would have been best to do a bypass, but I physically could not handle that. I did feel relief again. Then it came back. I also had SIBO, which is a big issue to watch for. I was getting confused of what was what. If that is caught and taken care of, I think it would be fine. Mine wasn't. Oct. 2017 I had a balloon in the celiac. For me this will be a life long thing. That doesn't mean for you. I have heard people have open surgery and in a month feel a lot better and continue on that path. There are many that have had laparoscopic an out of the hospital in like 3 days and done great. It depends on the situation. If you are unsure I would definitely get a second opinion. I think, personally, it should be a vascular surgeon. I have not had luck with GI drs even acknowledging that MALS is causing damage to the stomach. I have heard though some GI drs were great in diagnosis of it.
Sorry not much help. As for eating, I used to try to stay away from certain foods. Honestly it didn't matter. Just depended on the day and how bad my symptoms were. Water is really hard for me. Weird I know, but if I am really thirsty and drink more than a couple of sips, it hurts so bad, even now. I would definitely eat SMALL MEALS and more often throughout the day. If you have a problem with eating, and one day something sounds good and is working, eat it all day, who cares as long as you get something in you.

Well good luck to you. Oh and I was 47 when I was diagnosed and my surgeon said I was young, but I don't think he realized it was truly MALS until he went in and saw the diaphragm compression. I don't think age matters so much as the shape and health you are in. Feel free to ask any questions. Don't know if this helped any....

Jump to this post

@annief I wish I could be of more help in the recovery time is for robotic surgery, the one thing I can recommended is that no matter what type of surgery you have... you must take eating again very slow! It is wonderful to have less pain, and it is so easy to over do it! I also can relate to the pain you feel with sitting with your arms crossed... yes that is REAL!! Please know I am a chronic MALS patient, so I have had several surgeries... many people have one and are cured. For me, I have a difficult time due to other diagnosis on top of MALS, however I the good I get out of it is that I can help others who have similar symptoms or complications. So... back to the arms crossed, for me... when the pain is bad I cannot wear a bra... way too constricting, also with the weight loss you get to be a little more bony which causes pain with undergarments! Sorry men that are reading this.... but its true. Also, wearing a belt for me can be uncomfortable...which does not make a lot of sense since it is lower on the abdomen, however... it is still constricting. My one question to you is how will the surgeon determine if the artery has good blood flow after the release of the ligament? Did he explain? I am so excited that there are less invasive ways to treat this condition, so I look forward to hearing about your journey. For many of us, the longer the compression, the harder it is for that artery to go back to its normal shape. My surgery was open, and after the ligament was cut my artery was still kinked, verified by inter-operative ultrasound. I had a celiac bypass done, also it was discovered that the compression had resulted in increased velocities in my hepatic/splenic artery and a patch angioplasty was done to correct that. I was in my early 40's for my first surgery. I hope this helps! Please feel ask questions! Good to have you here.

REPLY
1 reply
annief | @annief | Aug 12, 2018
In reply to @jmmb "Hello @annief . Sorry to hear you are not feeling well. MALS is a really tricky..." + (show)
@jmmb

Hello @annief . Sorry to hear you are not feeling well. MALS is a really tricky and complicated disease/diagnosis. I don't think any two people are the same. Usually all have general similar symptoms like you have described. My MALS was found by accident. I have always had stomach issues since I was little. Told IBS and had ulcers. About 4 years ago, the pain was so bad I decided to go to the er just for pain meds or something. They insisted on ct scan. The dr. came out and asked if I knew that my arteries were narrowed. I was like I don't know. He said I should see a vascular surgeon. I told my pcp an he got me into a University teaching hospital and with the chief of vascular surgery. I had no idea what was going on. They did the doppler and said my velocities in the celiac and SMA were literally off the charts and I needed surgery right away. I was a teacher and asked to wait for spring break he said no. I thought ok, I took a month off. Wow was I wrong. Now of course mine was different. I had two arteries and they were severely compressed and it was a mess and about 8 hr surgery. I did feel better after. Long difficult recovery, plus a lot of personal stresses, family deaths, which didn't not help. But my arteries were good. However, 5 months later they were narrowing again. My surgery was Feb. 2014, In Sept. 2015 I got stents put into each artery. It would have been best to do a bypass, but I physically could not handle that. I did feel relief again. Then it came back. I also had SIBO, which is a big issue to watch for. I was getting confused of what was what. If that is caught and taken care of, I think it would be fine. Mine wasn't. Oct. 2017 I had a balloon in the celiac. For me this will be a life long thing. That doesn't mean for you. I have heard people have open surgery and in a month feel a lot better and continue on that path. There are many that have had laparoscopic an out of the hospital in like 3 days and done great. It depends on the situation. If you are unsure I would definitely get a second opinion. I think, personally, it should be a vascular surgeon. I have not had luck with GI drs even acknowledging that MALS is causing damage to the stomach. I have heard though some GI drs were great in diagnosis of it.
Sorry not much help. As for eating, I used to try to stay away from certain foods. Honestly it didn't matter. Just depended on the day and how bad my symptoms were. Water is really hard for me. Weird I know, but if I am really thirsty and drink more than a couple of sips, it hurts so bad, even now. I would definitely eat SMALL MEALS and more often throughout the day. If you have a problem with eating, and one day something sounds good and is working, eat it all day, who cares as long as you get something in you.

Well good luck to you. Oh and I was 47 when I was diagnosed and my surgeon said I was young, but I don't think he realized it was truly MALS until he went in and saw the diaphragm compression. I don't think age matters so much as the shape and health you are in. Feel free to ask any questions. Don't know if this helped any....

Jump to this post

My surgeon said probably two days in the hospital and probably only miss one week of work. Does that sound familiar to yours? I sit at a desk all day.

REPLY
Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Aug 11, 2018
In reply to @jmmb "Hello @annief . Sorry to hear you are not feeling well. MALS is a really tricky..." + (show)
@jmmb

Hello @annief . Sorry to hear you are not feeling well. MALS is a really tricky and complicated disease/diagnosis. I don't think any two people are the same. Usually all have general similar symptoms like you have described. My MALS was found by accident. I have always had stomach issues since I was little. Told IBS and had ulcers. About 4 years ago, the pain was so bad I decided to go to the er just for pain meds or something. They insisted on ct scan. The dr. came out and asked if I knew that my arteries were narrowed. I was like I don't know. He said I should see a vascular surgeon. I told my pcp an he got me into a University teaching hospital and with the chief of vascular surgery. I had no idea what was going on. They did the doppler and said my velocities in the celiac and SMA were literally off the charts and I needed surgery right away. I was a teacher and asked to wait for spring break he said no. I thought ok, I took a month off. Wow was I wrong. Now of course mine was different. I had two arteries and they were severely compressed and it was a mess and about 8 hr surgery. I did feel better after. Long difficult recovery, plus a lot of personal stresses, family deaths, which didn't not help. But my arteries were good. However, 5 months later they were narrowing again. My surgery was Feb. 2014, In Sept. 2015 I got stents put into each artery. It would have been best to do a bypass, but I physically could not handle that. I did feel relief again. Then it came back. I also had SIBO, which is a big issue to watch for. I was getting confused of what was what. If that is caught and taken care of, I think it would be fine. Mine wasn't. Oct. 2017 I had a balloon in the celiac. For me this will be a life long thing. That doesn't mean for you. I have heard people have open surgery and in a month feel a lot better and continue on that path. There are many that have had laparoscopic an out of the hospital in like 3 days and done great. It depends on the situation. If you are unsure I would definitely get a second opinion. I think, personally, it should be a vascular surgeon. I have not had luck with GI drs even acknowledging that MALS is causing damage to the stomach. I have heard though some GI drs were great in diagnosis of it.
Sorry not much help. As for eating, I used to try to stay away from certain foods. Honestly it didn't matter. Just depended on the day and how bad my symptoms were. Water is really hard for me. Weird I know, but if I am really thirsty and drink more than a couple of sips, it hurts so bad, even now. I would definitely eat SMALL MEALS and more often throughout the day. If you have a problem with eating, and one day something sounds good and is working, eat it all day, who cares as long as you get something in you.

Well good luck to you. Oh and I was 47 when I was diagnosed and my surgeon said I was young, but I don't think he realized it was truly MALS until he went in and saw the diaphragm compression. I don't think age matters so much as the shape and health you are in. Feel free to ask any questions. Don't know if this helped any....

Jump to this post

@annief It was amazing! I had no problem at all bending etc right away.

REPLY
annief | @annief | Aug 11, 2018
In reply to @jmmb "Hello @annief . Sorry to hear you are not feeling well. MALS is a really tricky..." + (show)
@jmmb

Hello @annief . Sorry to hear you are not feeling well. MALS is a really tricky and complicated disease/diagnosis. I don't think any two people are the same. Usually all have general similar symptoms like you have described. My MALS was found by accident. I have always had stomach issues since I was little. Told IBS and had ulcers. About 4 years ago, the pain was so bad I decided to go to the er just for pain meds or something. They insisted on ct scan. The dr. came out and asked if I knew that my arteries were narrowed. I was like I don't know. He said I should see a vascular surgeon. I told my pcp an he got me into a University teaching hospital and with the chief of vascular surgery. I had no idea what was going on. They did the doppler and said my velocities in the celiac and SMA were literally off the charts and I needed surgery right away. I was a teacher and asked to wait for spring break he said no. I thought ok, I took a month off. Wow was I wrong. Now of course mine was different. I had two arteries and they were severely compressed and it was a mess and about 8 hr surgery. I did feel better after. Long difficult recovery, plus a lot of personal stresses, family deaths, which didn't not help. But my arteries were good. However, 5 months later they were narrowing again. My surgery was Feb. 2014, In Sept. 2015 I got stents put into each artery. It would have been best to do a bypass, but I physically could not handle that. I did feel relief again. Then it came back. I also had SIBO, which is a big issue to watch for. I was getting confused of what was what. If that is caught and taken care of, I think it would be fine. Mine wasn't. Oct. 2017 I had a balloon in the celiac. For me this will be a life long thing. That doesn't mean for you. I have heard people have open surgery and in a month feel a lot better and continue on that path. There are many that have had laparoscopic an out of the hospital in like 3 days and done great. It depends on the situation. If you are unsure I would definitely get a second opinion. I think, personally, it should be a vascular surgeon. I have not had luck with GI drs even acknowledging that MALS is causing damage to the stomach. I have heard though some GI drs were great in diagnosis of it.
Sorry not much help. As for eating, I used to try to stay away from certain foods. Honestly it didn't matter. Just depended on the day and how bad my symptoms were. Water is really hard for me. Weird I know, but if I am really thirsty and drink more than a couple of sips, it hurts so bad, even now. I would definitely eat SMALL MEALS and more often throughout the day. If you have a problem with eating, and one day something sounds good and is working, eat it all day, who cares as long as you get something in you.

Well good luck to you. Oh and I was 47 when I was diagnosed and my surgeon said I was young, but I don't think he realized it was truly MALS until he went in and saw the diaphragm compression. I don't think age matters so much as the shape and health you are in. Feel free to ask any questions. Don't know if this helped any....

Jump to this post

Thanks @astaingegerdm. Since your surgery, is that better, Can you exercise, bend over like normal?

REPLY
Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Aug 9, 2018
In reply to @jmmb "Hello @annief . Sorry to hear you are not feeling well. MALS is a really tricky..." + (show)
@jmmb

Hello @annief . Sorry to hear you are not feeling well. MALS is a really tricky and complicated disease/diagnosis. I don't think any two people are the same. Usually all have general similar symptoms like you have described. My MALS was found by accident. I have always had stomach issues since I was little. Told IBS and had ulcers. About 4 years ago, the pain was so bad I decided to go to the er just for pain meds or something. They insisted on ct scan. The dr. came out and asked if I knew that my arteries were narrowed. I was like I don't know. He said I should see a vascular surgeon. I told my pcp an he got me into a University teaching hospital and with the chief of vascular surgery. I had no idea what was going on. They did the doppler and said my velocities in the celiac and SMA were literally off the charts and I needed surgery right away. I was a teacher and asked to wait for spring break he said no. I thought ok, I took a month off. Wow was I wrong. Now of course mine was different. I had two arteries and they were severely compressed and it was a mess and about 8 hr surgery. I did feel better after. Long difficult recovery, plus a lot of personal stresses, family deaths, which didn't not help. But my arteries were good. However, 5 months later they were narrowing again. My surgery was Feb. 2014, In Sept. 2015 I got stents put into each artery. It would have been best to do a bypass, but I physically could not handle that. I did feel relief again. Then it came back. I also had SIBO, which is a big issue to watch for. I was getting confused of what was what. If that is caught and taken care of, I think it would be fine. Mine wasn't. Oct. 2017 I had a balloon in the celiac. For me this will be a life long thing. That doesn't mean for you. I have heard people have open surgery and in a month feel a lot better and continue on that path. There are many that have had laparoscopic an out of the hospital in like 3 days and done great. It depends on the situation. If you are unsure I would definitely get a second opinion. I think, personally, it should be a vascular surgeon. I have not had luck with GI drs even acknowledging that MALS is causing damage to the stomach. I have heard though some GI drs were great in diagnosis of it.
Sorry not much help. As for eating, I used to try to stay away from certain foods. Honestly it didn't matter. Just depended on the day and how bad my symptoms were. Water is really hard for me. Weird I know, but if I am really thirsty and drink more than a couple of sips, it hurts so bad, even now. I would definitely eat SMALL MEALS and more often throughout the day. If you have a problem with eating, and one day something sounds good and is working, eat it all day, who cares as long as you get something in you.

Well good luck to you. Oh and I was 47 when I was diagnosed and my surgeon said I was young, but I don't think he realized it was truly MALS until he went in and saw the diaphragm compression. I don't think age matters so much as the shape and health you are in. Feel free to ask any questions. Don't know if this helped any....

Jump to this post

@annief it sounds very familiar, not being able to sit with crossed arms. I could not sit at computer table or other sitting chore. Bending over made me scream.

REPLY
annief | @annief | Aug 9, 2018
In reply to @jmmb "Hello @annief . Sorry to hear you are not feeling well. MALS is a really tricky..." + (show)
@jmmb

Hello @annief . Sorry to hear you are not feeling well. MALS is a really tricky and complicated disease/diagnosis. I don't think any two people are the same. Usually all have general similar symptoms like you have described. My MALS was found by accident. I have always had stomach issues since I was little. Told IBS and had ulcers. About 4 years ago, the pain was so bad I decided to go to the er just for pain meds or something. They insisted on ct scan. The dr. came out and asked if I knew that my arteries were narrowed. I was like I don't know. He said I should see a vascular surgeon. I told my pcp an he got me into a University teaching hospital and with the chief of vascular surgery. I had no idea what was going on. They did the doppler and said my velocities in the celiac and SMA were literally off the charts and I needed surgery right away. I was a teacher and asked to wait for spring break he said no. I thought ok, I took a month off. Wow was I wrong. Now of course mine was different. I had two arteries and they were severely compressed and it was a mess and about 8 hr surgery. I did feel better after. Long difficult recovery, plus a lot of personal stresses, family deaths, which didn't not help. But my arteries were good. However, 5 months later they were narrowing again. My surgery was Feb. 2014, In Sept. 2015 I got stents put into each artery. It would have been best to do a bypass, but I physically could not handle that. I did feel relief again. Then it came back. I also had SIBO, which is a big issue to watch for. I was getting confused of what was what. If that is caught and taken care of, I think it would be fine. Mine wasn't. Oct. 2017 I had a balloon in the celiac. For me this will be a life long thing. That doesn't mean for you. I have heard people have open surgery and in a month feel a lot better and continue on that path. There are many that have had laparoscopic an out of the hospital in like 3 days and done great. It depends on the situation. If you are unsure I would definitely get a second opinion. I think, personally, it should be a vascular surgeon. I have not had luck with GI drs even acknowledging that MALS is causing damage to the stomach. I have heard though some GI drs were great in diagnosis of it.
Sorry not much help. As for eating, I used to try to stay away from certain foods. Honestly it didn't matter. Just depended on the day and how bad my symptoms were. Water is really hard for me. Weird I know, but if I am really thirsty and drink more than a couple of sips, it hurts so bad, even now. I would definitely eat SMALL MEALS and more often throughout the day. If you have a problem with eating, and one day something sounds good and is working, eat it all day, who cares as long as you get something in you.

Well good luck to you. Oh and I was 47 when I was diagnosed and my surgeon said I was young, but I don't think he realized it was truly MALS until he went in and saw the diaphragm compression. I don't think age matters so much as the shape and health you are in. Feel free to ask any questions. Don't know if this helped any....

Jump to this post

Traveling to the Mayo Clinic is not an option for me at this time. I have gone back and read a lot of the post. I feel for so many with this condition. I just can't imagine dealing with this as a young person or with little children. Ugh! I am doing so so for now. Trying to deal with the emotional element of this. Sadness, frustration, I’m sure everyone knows. People do not understand. They ask how you are doing and I just have to say better, when I am really not but it is TMI. The thought that I may not be able to do some of the things I enjoy is disconcerting. For instance on vacation I was so hesitant to go kayaking which I enjoy but just like the eating, I don't want to get myself in a situation that will aggravate the pain. My stomach symptoms have been slightly better so maybe the blood thinner is helping that. Who knows. Other days they are not so good.

Just when I think the pain in one area could be better, I get pain somewhere else. As I have read through the post, there are so many different symptoms with this! I am holding out hope that I will not have to have the surgery but think it could be inevitable. So for now I am researching doctors. And everyone here knows the frustration with that. I saw a vascular surgeon last week who would do a robotic laperoscaepic procedure to cut the ligament and some of the nerves in that area. I appreciate everyone's post. Seeing what others are going through is very helpful. At this point I am seeking opinions from doctors and still hoping the blood thinner I’m on for the pulmonary emboli will help me avoid surgery.

A couple of questions...if left untreated, does the compression get worse. Also, I can no longer sit with my arms crossed. It literally is uncomfortable to have pressure in that area. Does that sound familiar?

REPLY
Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Aug 8, 2018
In reply to @astaingegerdm "@vdolson I know how your mother is suffering. Took me a few years to get diagnosed...." + (show)
@astaingegerdm

@vdolson
I know how your mother is suffering. Took me a few years to get diagnosed. I went to a well known university hospital and was seen by the chief of GI surgery. He told me pros and cons- including it might not change symptoms. I decided to go ahead- couldn’t get much worse. Laparoscopic surgery. All went well- nerve ganglia removed too. Symptoms recurred in a few months, because the artery never straightened out. A stent was placed and fine since then. I would recommend looking into university hospitals and interview. One does not have to have surgery unless one feels it’s right. I am happy I went through with it.

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@kariulrich
My stent was placed 3 years ago. Nowadays I get checked once a year, so far with CT angio, but they will use ultrasound next time. I know that it might have to be replaced at some point -that’s ok. I am just so happy to find the cause of that pain.

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