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?

Hi:
Did you ever get the surgery for your MAL? I was just diagnosed with Celiac Compression Syndrome at the Northwestern in Chicago. I had Dr. Skelly do my first imaging of my arteries in my abdominal and he said he didn’t think I had MALS now 8 years later with the same problem I was told that I most likely have Celiac Compression Syndrome. In the process of looking for the best Vascular Doctor that specializes in this problem.
Who did you go see? And did they fixed your problem? Thanks

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@redhead63

Hi:
Did you ever get the surgery for your MAL? I was just diagnosed with Celiac Compression Syndrome at the Northwestern in Chicago. I had Dr. Skelly do my first imaging of my arteries in my abdominal and he said he didn’t think I had MALS now 8 years later with the same problem I was told that I most likely have Celiac Compression Syndrome. In the process of looking for the best Vascular Doctor that specializes in this problem.
Who did you go see? And did they fixed your problem? Thanks

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Dr. Kendrick from Mayo in Rochester did lap MAL release over a year ago. I had total relief of symptoms for about a year. Now symptoms are starting to return, which seems common with lap surgery. Sxs are usually triggered by sitting for 1 hour or more because compression is the worst in this position. Dr. Hsu in Connecticut seems to have the best outcomes from his open surgery as evidenced by the majority of his patients who had his surgery within the last 2 years (see Facebook group “MALS Awareness”). Prior to that, some of his patients are still struggling (see Facebook “MALS Still Struggling”). Dr. West and Dr El Hayek seem to have many MALS pts who are pleased for the most part. The best advice I can give is to educate and advocate for yourself before jumping into surgery. The best resources are pts with MALS in MALS Pals, MALS Awareness, and MALS still struggling. The awareness group has the most educational resources in their files.

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@sclindajanssen

Dr. Kendrick from Mayo in Rochester did lap MAL release over a year ago. I had total relief of symptoms for about a year. Now symptoms are starting to return, which seems common with lap surgery. Sxs are usually triggered by sitting for 1 hour or more because compression is the worst in this position. Dr. Hsu in Connecticut seems to have the best outcomes from his open surgery as evidenced by the majority of his patients who had his surgery within the last 2 years (see Facebook group “MALS Awareness”). Prior to that, some of his patients are still struggling (see Facebook “MALS Still Struggling”). Dr. West and Dr El Hayek seem to have many MALS pts who are pleased for the most part. The best advice I can give is to educate and advocate for yourself before jumping into surgery. The best resources are pts with MALS in MALS Pals, MALS Awareness, and MALS still struggling. The awareness group has the most educational resources in their files.

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Hi:
Thank you for all the information on MALS
I will call the Cleveland Clinic tomorrow

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@redhead63

Hi:
Thank you for all the information on MALS
I will call the Cleveland Clinic tomorrow

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My vascular surgeon at Mayo Clinic was Dr. Gustavo Oderich, he was the perfect choice for me given his expertise in both MALS, Fibromuscular Dysplasia and Ehlers-Danlos. Thinking of you!

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Hi:
I was at the Mayo less than a year ago, never saw a GI or Vascular Surgeon but I did see many Doctors there and I was Diagnosed with Neurological Functional Disorder, which I knew I did not have. I had a really bad experience with Mayo.
Thanks
Debbie

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I was diagnosed with MALS and the doctors suggested surgery. I’ve lost quite amount of weight, and I am about 103 pounds now. Do I need to gain weight to prepare for surgery? If so, how much.

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@103196

I was diagnosed with MALS and the doctors suggested surgery. I’ve lost quite amount of weight, and I am about 103 pounds now. Do I need to gain weight to prepare for surgery? If so, how much.

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I would focus on getting your nutritional status up prior to surgery, it is very difficult to get weight up prior to surgery. If you can eat a protein with a carb, a vegetable with a carb, a fruit with a carb. If you can supplement with boost or another nutritional drink do so. Surgery takes a lot of you and you will not be able to eat normally immediately after the surgery. I does take time for your body to get use to eating again. A multivitamin if you can tolerate one is not a bad idea, all my supplements are in Gummy form as I seemed to tolerate those best. When is your surgery scheduled and what type of surgery will you be having done? Have some more advice as you go through this process 😀 however I don't want to overwhelm you with information.

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@redhead63

Hi:
I was at the Mayo less than a year ago, never saw a GI or Vascular Surgeon but I did see many Doctors there and I was Diagnosed with Neurological Functional Disorder, which I knew I did not have. I had a really bad experience with Mayo.
Thanks
Debbie

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Oh sorry to hear that Debbie! It really depends on the team of doctors you see and how your personality blends with the physicians… I have gone through several doctors at Mayo, and it took me awhile to find a team that works with me and my needs. It is frustrating when you have a complex diagnosis and you have to jump through hoops to see the physicians you need, even then sometimes the gatekeepers don't allow patients to see the doctors they are requesting to see. I find that the most frustrating problem! Hopefully that problem can come to light at Mayo and they will become more willing to listen to the needs of the patients in seeing who they request to see, especially when it is a rare disease… the patient most often times knows more than the gatekeepers and it is difficult to see the experts in the field. Another problem is that the gatekeepers do not always realize that their colleagues in another department are the experts. Hope this makes sense to you.

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I am very excited to announce that the National Organization for Rare Disorders- NORD has just recognized MALS! Thank you to Dr. Skelly et al! https://rarediseases.org/rare-diseases/median-arcuate-ligament-syndrome/

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Hello everyone. I’m trying to get some answers. I was admitted to the hospital for having a blood clot in my left leg. The clot dissolved and I was good to go. Through that stay in the hospital I through several test along with 2 CT scans with contrast and a MRI. The Dr. that was taking care of me noticed on one of my CT scans that it showed I have a high-grade stenosis of the celiac axis orgion, with arcuate ligament compression syndrome. I was directed to see a vascular surgeon after seeing the CT scan. The vascular surgeon said my symptoms were vague but he did see that I have the stenosis of the celiac artery but he wanted me to go to a GI doctor. So I’ve had an upper GI,blood work, Ultrasound and all have come back negative. Blood work came back normal. Furthermore, when I had my Ultrasound the doctor stated that my CT scan was very impressive, that she could see that it was narrowed. However, since the GI doctor only wanted to know about my gallbladder, pancreas, liver, and spleen which all came back negative. There was no nothing on the report of the level of flow going through the celiac artery, but the doctor said the flow was high. Now my GI doctor wants me to do a test to see if my gallbladder is functioning properly if that comes up negative he wants me to do a colonoscopy. If that comes out negative he wants me to see a general surgeon to remove my gallbladder. Weird everything comes up negative, so let’s just take the gallbladder out lol. With all this I feel that I’m going down a rabbit hole. My symptoms have become worse, I don’t eat much, I’ve started to lose weight and my stomach hurts whenever I eat anything. My vascular surgeon said that MALS comes down to excluding everything then they can say it’s MALS. So with all that being said what should I do? I feel that no one is listening or the doctors think this is made up. I feel that my GI doctor is trying to say my symptoms are gallbladder but everything has come out negative. And knowing that I have the high grade stenosis of the celiac artery but they’re ignoring it. Please any help would be greatly appreciated. Thanks.

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@jayson

Hello everyone. I’m trying to get some answers. I was admitted to the hospital for having a blood clot in my left leg. The clot dissolved and I was good to go. Through that stay in the hospital I through several test along with 2 CT scans with contrast and a MRI. The Dr. that was taking care of me noticed on one of my CT scans that it showed I have a high-grade stenosis of the celiac axis orgion, with arcuate ligament compression syndrome. I was directed to see a vascular surgeon after seeing the CT scan. The vascular surgeon said my symptoms were vague but he did see that I have the stenosis of the celiac artery but he wanted me to go to a GI doctor. So I’ve had an upper GI,blood work, Ultrasound and all have come back negative. Blood work came back normal. Furthermore, when I had my Ultrasound the doctor stated that my CT scan was very impressive, that she could see that it was narrowed. However, since the GI doctor only wanted to know about my gallbladder, pancreas, liver, and spleen which all came back negative. There was no nothing on the report of the level of flow going through the celiac artery, but the doctor said the flow was high. Now my GI doctor wants me to do a test to see if my gallbladder is functioning properly if that comes up negative he wants me to do a colonoscopy. If that comes out negative he wants me to see a general surgeon to remove my gallbladder. Weird everything comes up negative, so let’s just take the gallbladder out lol. With all this I feel that I’m going down a rabbit hole. My symptoms have become worse, I don’t eat much, I’ve started to lose weight and my stomach hurts whenever I eat anything. My vascular surgeon said that MALS comes down to excluding everything then they can say it’s MALS. So with all that being said what should I do? I feel that no one is listening or the doctors think this is made up. I feel that my GI doctor is trying to say my symptoms are gallbladder but everything has come out negative. And knowing that I have the high grade stenosis of the celiac artery but they’re ignoring it. Please any help would be greatly appreciated. Thanks.

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Hi @jayson so happy you found us, welcome to Mayo Clinic Connect! First, deep breath. I know it seems overwhelming but all that your doctors are doing is actually necessary, right now with the information we have available MALS is an acquire diagnosis yet other diagnosis (differential diagnosis) must be ruled out before you can start treatment options for MALS. It is a frustrating but necessary step. Often times all GI work up will be normal in MALS patients. Most vascular surgeons want you to have a comprehensive GI work up and vascular work up before they start with treatment options. I am using the word MALS with you … have they said that to you… celiac compression can also be caused by vascular disorders… either way you are at the right place. You have a good vascular surgeon it sounds like, he is right that MALS is a diagnosis of exclusion. A high grade stenosis will be addressed, but again it is a comprehensive work up. Please feel free to ask questions. There are some amazing people on this site and they have a wide range of experience.

Liked by ukmalsman, jayson

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@kariulrich

Hi @jayson so happy you found us, welcome to Mayo Clinic Connect! First, deep breath. I know it seems overwhelming but all that your doctors are doing is actually necessary, right now with the information we have available MALS is an acquire diagnosis yet other diagnosis (differential diagnosis) must be ruled out before you can start treatment options for MALS. It is a frustrating but necessary step. Often times all GI work up will be normal in MALS patients. Most vascular surgeons want you to have a comprehensive GI work up and vascular work up before they start with treatment options. I am using the word MALS with you … have they said that to you… celiac compression can also be caused by vascular disorders… either way you are at the right place. You have a good vascular surgeon it sounds like, he is right that MALS is a diagnosis of exclusion. A high grade stenosis will be addressed, but again it is a comprehensive work up. Please feel free to ask questions. There are some amazing people on this site and they have a wide range of experience.

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Thanks so much for responding. I’ve copied my vascular doctors plan going forward. Please let me know what you think. I’m going Wednesday for a PPD test of the gallbladder. After that a colonoscopy.

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@kariulrich

@lmtuska, Nice to meet you! I have had 2 MALS surgeries done at Mayo, and would be happy to share any information that would be helpful. Mals in the pediatric population may be a bit different than the adult population. My experience is a bit different as I have an underlying vascular disease. There are two approaches to MALS surgery, laparoscopic and open. I would recommend asking about the pros and cons of both. It sounds like you have opted for the open approach. The open surgery is a long recovery time, for me it was at least a year. This is a small list of things that helped me:

Open MALS Helpful Hints

• No perfume, lotion, hairspray, fabric softener (Smells really bothered me after surgery)

• Needs: 1 size larger underwear and socks, slip on shoes
Loose fitting comfy yoga pants
Undershirt soft to protect clothes from rubbing against the incision

• Several travel size pillows

• Wash everything in dreft before using (My skin was sensitive)

• Unscented lotion for back rubs

• Ice pack help for back pain

• Electronic chair (If you can afford purchasing one, I highly recommend it) Great for sleeping in the first few months or more.

• Foods malt o meal good, pudding, white toast, popsicle, anything easy to digest

• Mask and headphones or ear plugs

• Something from home, small, a stuffed animal anything to keep with you

• Eat slow, very slow If you think you are eating slow eat even slower. Advance diet slowly, VERY SMALL PORTIONS. Use your iPhone during dinner to keep you entertained, yes you should be eating that slow. Eat 1/2 of what you think you can eat. After surgery, there is no longer post prandial pain and your body is malnourished so it is easy to over eat and the fact you want to eat is an amazing feeling in itself. 

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Hi @kariulrich, I was just diagnosed with MALS and I am currently being tested to see if I will need surgery. I am being told I will go to California if it is needed. I also have POTS so flying is tough. I have SIBO and high histamine reactions as well so I have to be real careful with what I eat. I am quite apprehensive about surgery. I wondered if you had the laparoscopic procedure as well? Is there a reason why either or is preferred? I have also heard that some end up needed surgery twice. Was this the case for you and if so, can you share why? Finally, I thought my GI doctor stated there is a 50/50 survival, but I think she meant a 50/50 success rate. I will ask her when I return to see her. I just wondered about anything you could advise to ease my worry. I appreciate the sharing.

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@bl3ss3d

Hi @kariulrich, I was just diagnosed with MALS and I am currently being tested to see if I will need surgery. I am being told I will go to California if it is needed. I also have POTS so flying is tough. I have SIBO and high histamine reactions as well so I have to be real careful with what I eat. I am quite apprehensive about surgery. I wondered if you had the laparoscopic procedure as well? Is there a reason why either or is preferred? I have also heard that some end up needed surgery twice. Was this the case for you and if so, can you share why? Finally, I thought my GI doctor stated there is a 50/50 survival, but I think she meant a 50/50 success rate. I will ask her when I return to see her. I just wondered about anything you could advise to ease my worry. I appreciate the sharing.

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Hello,
I have recently been diagnosed with MALS, and my doctor mentioned that many times it comes along with another diagnosis. Does anyone have any experience with this? Or just have MALS without another diagnosis?

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@chicken I was diagnosed with Fibromuscular Dysplasia prior to MALS. I have not heard that it connected with any other diagnosis at this time, so little research has been done. There is a list of differential diagnosis that must be ruled out before MALS is diagnosed…do you think maybe that is what he meant? How are you doing? How was your MALS discovered?

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