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?

@claudiabrende

Did you go to Mayo? I am having some of the same issues but all test show up negative besides numerous infections in my colon, intestine, giardia, cdiff, and kidney infections.

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@claudiabrende I know how it feels to be scared, and it is not easy being a single mom with an undiagnosed illness. Please know you are not alone, we have a small but powerful group of people here. As difficult as it is to be labeled by the medical community do not give up advocating for yourself. The words one day at a time seem insurmountable when you are dealing with symptoms, one moment at a time. Remember your children are resilient, although they should not have to be. May I ask the ages of your kiddos? I think that has always been the most difficult thing with my illness, concern over my kids. As parents we can endure so much, but when it starts affecting our kids it is overwhelming. The pain is so difficult to cope with, and there are never easy answers. Each person is different. I have tried so many approaches and continue to seek ways that keep me from the ER. It is humiliating when you are at your weakest and physicians and nurses think you are seeking for alternative reasons. What many do not understand is that by the time we end up in the ER we have exhausted every possible avenue for help. More education needs to be done. I know it can be frustrating for our healthcare providers as well, as there are no easy solutions to so many conditions.

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@pianoplayer

My Daughter is majoring in Piano Performance and composition. As a piano student she practiced daily, she also accompanied for an opera, performed her Junior Recital, plays in church and at a restaurant on Friday evenings, when she complained of her wrists hurting we figured it was tendonitis until other joints began hurting. We took her to the doctor who diagnosed her with Lyme’s. She started taking an antibiotic and had a reaction resulting in migraine headaches and nausea. She promptly started amoxicillin and the symptoms subsided for a few days until she woke us up saying she had to go to the hospital not tomorrow but right now, this minute. The symptoms have continued and she has been diagnosed with MAL’s

Last week she had a CT Angiogram, which indicated a median ligament syndrome with clinical symptomatology. The video indicated two abnormalities, first a necking of the celiac Artery also revealed in a CT-scan two years when she had her appendix removed but not as severe an at present. Second, the path of the artery branching from the aorta has a narrow radius, 300-degree upward path rather than a long radius 210-degree path.

Her Doctor has performed orthoscopic surgeries to correct the celiac Artery Compression, and he recommended we have Emily consult with an Infectious Disease specialist and a Gastrologist before considering surgery. The Doctor also gave us a list of local surgeons and surgeons from the Mayo Clinic and Cleveland Clinic who perform this procedure using Orthoscopic or robotic surgery. Emily is suffering more than discomfort from this condition and we would all like to correct it as soon as possible; however, there are risks to mitigate.

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Yesterday we saw a Gastrologist who is prescribing testing for stomach emptying and another related test. Today we saw an Infectious Disease Specialist who said we can likely dismiss Lyme's disease but Emily has had another blood test to be certain Lyme's disease is not present. This afternoon I contacted Mayo Clinic in Rochester, MN and have registered Emily. Tomorrow August 2nd I will be contacting the Vascular Surgery department at Mayo for a consultation. The Vascular Surgeon who removed Emily's appendix is a candidate for performing Emily's surgery which looks more and more likely will occur at Mayo or in Waukesha WI. I want to consider all options make sure Emily is in good hands.

Dear MALS friends and family, I have had the opportunity to meet another MALS patient online who shares her MALS experience on a BLOG! I thought it would be helpful to others who wanted to follow her journey. She gave me permission to share this here. (Her introduction was done as a guest blogger on my personal blog, if you are interested in learning more about her: https://fibromusculardysplasia.blogspot.com/2018/08/median-arcuate-ligament-syndrome-mals.html OR you can go directly to her blog: https://www.itsnotibs.com/single-post/2018/04/05/5-Ways-to-Provide-Comfort-in-Impossible-Situations Thank you!! Hope you find this helpful!

@claudiabrende

Did you go to Mayo? I am having some of the same issues but all test show up negative besides numerous infections in my colon, intestine, giardia, cdiff, and kidney infections.

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@claudiabrende… I thought I responded to this post? Yet I am not seeing my reply! I am so sorry. ( It was a long reply too lol) Anyways, please do not give up. You are your best advocate, and we are all with you as you go through this journey. Just know you are not alone, and no matter what the diagnosis… our symptoms are similar so I think you will find this group helpful. We are small but mighty! I know your scared, deep breath, one moment at a time. Gentle Hugs!!

@lisa01

Are you aware of a FB support group called MALS PALS. It is a support group for people suffering with MALS and their loved ones. It gives a tremendous amount of informstion of individual struggles, and various treatments and specialists that treat MALS. Highly recommended!!

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I was diagnosed with MALS in February but also have biliary dyskinesia as well with Liver issues. But they were unable to put the stent or patches in as they could not get good vascular access and had a hard time putting in the arterial line. AS a result they decided to just take out the ligament with intent to put in rest later. I was a little disappointed but for now I am just waiting for the next velocity ultrasound to see where we are at. You mentioned you to had to have the procedure twice. Did your velocity change after the first procedure to their liking? My surgeon told me it would respond favorably ay first but over time it would begin to collapse again as a result of the vessel being used to that configuration. I am sure it won't be as bad this time just because the ligament has been removed. I have had other problems but have found I can't eat more volume and actually want to eat at times but still no real weight gain. Any thoughts would be helpful. Thanks.

@lisa01

Are you aware of a FB support group called MALS PALS. It is a support group for people suffering with MALS and their loved ones. It gives a tremendous amount of informstion of individual struggles, and various treatments and specialists that treat MALS. Highly recommended!!

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Hello @perion, I appreciate you asking about my experience with the second MALS surgery. Like you, I have underlying issues. I have a vascular disease called Fibromuscular Dysplasia (FMD), and it is interesting that the Cleveland Clinic is finding several patients with FMD also have MALS, however not all MALS patients have FMD. For me, my first MALS surgery was an open surgery where they released the ligament and then preformed a bypass of the celiac artery with a dacron graft ( I was 40 years old at diagnosis, so my artery had been kinked for too long and it would not go back to it's normal shape) I agree with your surgeon, many times an artery will not resume an open shape, unless you are young when it is discovered. It seems the pediatric population has a better success rate at cutting the ligament and not having to address the artery after. Also at the time I had stenosis that affected my hepaticbillary artery and had a patch angioplasty with a bovine patch. Now jump ahead 3 years after my initial surgery. I did great for 3 years, I could eat, I gained weight and felt much better, but about the 3 year post op point I started to develop symptoms again. I had every test done under the sun to make sure it was not restenosis… and what is so strange is that all my tests, even vascular imaging did not have any significant changes. I continued to loose weight and was feeling awful, Mayo did a specific MRI that they were researching for vascular patients and that came back normal. It was frustrating to both my doctors and me. It is not common today for surgeons to do exploratory surgery when a patient's imaging and testing come back normal, but my symptoms same as with my first surgery, only this time my weight loss was more significant. My vascular surgeon agreed it was time to take a closer look. I ended up with a 8 hour surgery, it took a long time to get through the significant amount of scar tissue, but when he did he had an intraoperative ultrasound done which showed stenosis that in my graft that did NOT show up on any CT, U/S or MRI previously. He ended up doing a revision of my graft. I will say, not to frighten you, but to prepare you, each surgery was an enormous recovery and difficult. It takes a minimum of a year to recover for many. BUT IT IS WORTH IT!!! I will never regret having the surgeries, as for a period of time it changed my quality of life. When it is time for you to have surgery, if that is the path you decide to take, you will have a lot of support here! Like I tell everyone, you are not alone and you will get through this. So ask questions, lots of questions!! Take notes… and most of all advocate for yourself. You know your body better than anyone. I hope this helps??

@lisa01

Are you aware of a FB support group called MALS PALS. It is a support group for people suffering with MALS and their loved ones. It gives a tremendous amount of informstion of individual struggles, and various treatments and specialists that treat MALS. Highly recommended!!

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My mom has been dealing with what we now know is MALS for years. Her surgeon had recommended surgery and we are trying to figure out if open or laparoscopic is better. He this laparoscopic but so many has said the open last longer. Also we are trying to figure out who is the best specialist for this as her dr says hes not. My mom has had 2 other surgeries to place a stent and then to open it because it got a blood clot and place a 2nd. She has had a hard time recovering as that was in Nov and she is getting worse. Can you perhaps point me in the right direction for a Dr and opinions on how to do the surgery please.

@lisa01

Are you aware of a FB support group called MALS PALS. It is a support group for people suffering with MALS and their loved ones. It gives a tremendous amount of informstion of individual struggles, and various treatments and specialists that treat MALS. Highly recommended!!

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Welcome @vdolson! Happy to have you here. Your mom's case sounds like a friend of mine, same situation. May I ask the age of your mother? It does seem to make a difference. I would recommend that your mom see's a vascular surgeon who has experience with MALS patients, and those who have had multiple surgeries. May I ask where you live? There is a list of physicians by state that other MALS patients recommend. I have experience with open surgery, I have had a bypass of my celiac artery with a Dacron graft. I had a revision done about 3 years ago. My next question, with your mother's multiple surgeries, have they all been due to MALS? Does she have an underlying connective tissue our vascular disease? How are you both holding up? This is a stressful time trying to figure out the best options!

@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.

@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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@astaingegerdm may I ask, how long have you had the stent and secondly do you have any monitoring of the stent done? Curious about what your doctor has suggested. I apologize if you have posted this information before, our group has been growing and I am not always good at recalling everyone's experience. It is so good to hear success stories!! Thank you so much for posting your experience it is encouraging. I appreciate it.

@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.

@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….

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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?

@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….

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@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.

@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….

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

@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….

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

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