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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Kari Ulrich, Alumna Mentor | @kariulrich | Jul 16, 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

I may know of someone... not positive if the is the Dallas area of Texas. I will check with a friend of mine and let you know. If you can travel I would recommend Mayo, Cleveland Clinic, or University of Virginia .

REPLY
Kari Ulrich, Alumna Mentor | @kariulrich | Jul 16, 2018
In reply to @kanaazpereira "I'm so glad to know that you're progressing well, @annief; welcome to Connect. I'm certain @kariulrich..." + (show)
@kanaazpereira

I'm so glad to know that you're progressing well, @annief; welcome to Connect. I'm certain @kariulrich @jmmb @pfpurple @tclarkkkk and others in this incredibly informative group will join in with their thoughts as well.

Would you share more about how you are managing your diet? Do you have any restrictions, or are you able to include everything in your diet? Has your doctor suggested any next steps?

Jump to this post

@annief How are you doing??? Feeling any better? Did smaller meals work? I eat small meals 8-10 times a day... so basically snacking all day. I always eat a carb with a fruit, then carb with a vegetable, carb with protein... mostly crackers or chocolate seem to be working well for me. I also take multi vit. I do not drink with food. So I drink water or tea through out the day. I have recently started drinking a red bull energy drink (the one with sugar) because my energy levels get so low around 11-12pm... it can make your pulse go up if your not use to the caffeine. ( The caffeine has really cut back on my headaches).

REPLY
jmmb | @jmmb | Jul 4, 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

Hi @annief ,
My original surgeon that did my surgery is a Baylor University Hospital and he is chief of vascular surgery. His name is Joseph Mills. He was really great. You can go to their web site and look under vascular surgeons. I learned so much from this site. I had no idea going in to my surgery. I learned it all after. The more knowledge you have, the better you will be able to make decisions. Good luck!

REPLY
annief | @annief | Jul 4, 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

Hi @jmmb,

Thanks so much for sharing this information! I can’t imagine dealing with this for as long as you have. This is definitely a frustrating diagnosis. After reading the post and at the recommendation of my pcp, it sounds like I definitely need more test and information. While I am eating small meals, I still have issues. The vascular doc that was consulted in the hospital has referred me to another vascular doc so I will call him tomorrow. The information I have gathered from this site has made me better prepared with questions I will ask the new doc.

If anyone in the Dallas area can recommend doctors experienced in this, I would appreciate it. Thanks!

REPLY
jmmb | @jmmb | Jul 2, 2018

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....

REPLY
11 replies
Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Jun 28, 2018
In reply to @kanaazpereira "I'm so glad to know that you're progressing well, @annief; welcome to Connect. I'm certain @kariulrich..." + (show)
@kanaazpereira

I'm so glad to know that you're progressing well, @annief; welcome to Connect. I'm certain @kariulrich @jmmb @pfpurple @tclarkkkk and others in this incredibly informative group will join in with their thoughts as well.

Would you share more about how you are managing your diet? Do you have any restrictions, or are you able to include everything in your diet? Has your doctor suggested any next steps?

Jump to this post

Consult another doctor- and a third if needed. I was also told there was no guarantee. I made the decision to go through with the surgery. My pain was bad. It was a university hospital and the surgeon did mostly GI surgery. He admitted to only having done 5 in his very long career. All went well. Needed a stent placed later to keep it open.
I used to have small meals, I still do.

REPLY
Kanaaz Pereira, Connect Moderator | @kanaazpereira | Jun 27, 2018

Hang in there, @annief. I'd sincerely encourage you to go through the previous posts in this discussion; I'm certain you will find many valuable suggestions and tips from fellow Connect members like @jmmb and Mentor @kariulrich.

REPLY
annief | @annief | Jun 27, 2018
In reply to @kanaazpereira "I'm so glad to know that you're progressing well, @annief; welcome to Connect. I'm certain @kariulrich..." + (show)
@kanaazpereira

I'm so glad to know that you're progressing well, @annief; welcome to Connect. I'm certain @kariulrich @jmmb @pfpurple @tclarkkkk and others in this incredibly informative group will join in with their thoughts as well.

Would you share more about how you are managing your diet? Do you have any restrictions, or are you able to include everything in your diet? Has your doctor suggested any next steps?

Jump to this post

Well after I posted, I’ve had a rough couple of days. I’m guessing I ate too much at a meal or the wrong thing. I’ve been feeling just like I did before they found a blood clot, stomach pain nausea. I think I just have to figure out how to eat with this condition and be vigilant. So you asked about my diet, I’m still figuring that out. Any suggestions Are welcome. Also which doctor manages this condition, the gastroenterologist or the vascular doctor? My primary care was the one that admitted me to the hospital and began running all the test. If it were not for her, I think I would still be wondering what’s wrong with me. I am over 50 so no one is rushing to do surgery because it’s not guaranteed it will work. The Doppler ultrasound sounds like it would be beneficial. Maybe I will consult another doctor and see what they say.

REPLY
Kari Ulrich, Alumna Mentor | @kariulrich | Jun 27, 2018
In reply to @annief "Glad to find this! After a couple of months of stomach issues and all the usual..." + (show)
@annief

Glad to find this! After a couple of months of stomach issues and all the usual test on your stomach and colon, the doctors did a ct scan with contrast. That revealed the compression of my Celiac artery. Also revealed pulmonary emboli in my lower lung. They estimate my artery is only 30% compressed but the blood clot was adding to my problem and causing the typical weight loss, stomach pain, etc. Since I have been on blood thinners I can eat again. I am 70% better so no surgery at this point but I can tell this will most likely be an on going issue the rest of my life. Good to know this resource is available.

Jump to this post

Welcome @annief! I am so happy they found the PE in your lung! OH MY!!! Glad you are able to eat again. If the symptoms return and they are concerned about MALS, it would be beneficial to find out the velocities in your celiac artery with a doppler ultrasound. Please know we are here, and will try our best to answer any questions you may have!

REPLY
Kanaaz Pereira, Connect Moderator | @kanaazpereira | Jun 26, 2018

I'm so glad to know that you're progressing well, @annief; welcome to Connect. I'm certain @kariulrich @jmmb @pfpurple @tclarkkkk and others in this incredibly informative group will join in with their thoughts as well.

Would you share more about how you are managing your diet? Do you have any restrictions, or are you able to include everything in your diet? Has your doctor suggested any next steps?

REPLY
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