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?

@applegrl Welcome to the MALS discussion! Do you or a family member have similar symptoms?

REPLY

Would like to connect with anyone who has Stent placement for MALS or has had recurrence of symptoms after multiple surgeries. Thank you!

REPLY
@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!!

Jump to this post

Does this mean that even though you had a ganglionectomy with the 1st surgery that your symptoms can back? Did you need the omental patching around the area because scar tissue was causing problems/pain? I’m asking because my daughter is 4.25 months post op and at 2 months post op a stabbing pain has started in her epigastric region. Since there is no easy way to diagnose scar tissue I am looking at all options.

REPLY

Hi Kari, I just discovered your forum and find it a valuable source of information, especially by other patients that have experienced a similar condition. I was diagnosed with gastroparesis 4 years ago and now that the abdominal pain and nausea have worsened they did a CT angio and discovered I have MALS and other related issues. I did research online and thought the doc would recommend surgery to fix the problem but my GI doc said she would not recommend surgery unless I lost 25-30 lbs and was very malnourished. That would leave me at 78 lbs. I went from 128 to 94 lbs while they were diagnosing the gastroparesis. The upper gastric pain will start early in the morning with 1/2 glass of water to take my gastroparesis pill. Even without any food. Now I have no idea what is causing the sudden increased pain – the MALS or the stomach. I am on a very restricted diet and eat extremely small amounts of food to lesson the stomach pain. The only medication I take for the gastroparesis is Domperidone. She has no suggestions on what to do to help alleviate the pain from the Celiac artery compression syndrome and some other issue involving the duodenum.

My PCP said I should probably try to get in to Mayo Clinic but I tried several years ago when my doc couldn’t find out what was wrong for 1 1/2 years, and was told because I have Medicare (and a supplement) they couldn’t see me in the GI department. Since MALS and Gastroparesis is considered rare, do you think I should reapply and see if they would accept me for these conditions. The other health conditions I have that aren’t rare can be treated by regular specialists but the two new conditions they seem to not have a clue.

If not Mayo, maybe you or others are aware of specialists in the greater Phoenix area that know more about these conditions than the average Gastro. I would appreciate any feedback.

REPLY
@azbluebird

Hi Kari, I just discovered your forum and find it a valuable source of information, especially by other patients that have experienced a similar condition. I was diagnosed with gastroparesis 4 years ago and now that the abdominal pain and nausea have worsened they did a CT angio and discovered I have MALS and other related issues. I did research online and thought the doc would recommend surgery to fix the problem but my GI doc said she would not recommend surgery unless I lost 25-30 lbs and was very malnourished. That would leave me at 78 lbs. I went from 128 to 94 lbs while they were diagnosing the gastroparesis. The upper gastric pain will start early in the morning with 1/2 glass of water to take my gastroparesis pill. Even without any food. Now I have no idea what is causing the sudden increased pain – the MALS or the stomach. I am on a very restricted diet and eat extremely small amounts of food to lesson the stomach pain. The only medication I take for the gastroparesis is Domperidone. She has no suggestions on what to do to help alleviate the pain from the Celiac artery compression syndrome and some other issue involving the duodenum.

My PCP said I should probably try to get in to Mayo Clinic but I tried several years ago when my doc couldn’t find out what was wrong for 1 1/2 years, and was told because I have Medicare (and a supplement) they couldn’t see me in the GI department. Since MALS and Gastroparesis is considered rare, do you think I should reapply and see if they would accept me for these conditions. The other health conditions I have that aren’t rare can be treated by regular specialists but the two new conditions they seem to not have a clue.

If not Mayo, maybe you or others are aware of specialists in the greater Phoenix area that know more about these conditions than the average Gastro. I would appreciate any feedback.

Jump to this post

Welcome to Connect, @azbluebird.
I’m confident that @kariulrich will reply to you soon. It helps so much to hear from others who have experience with the same condition. In the meantime, I wanted to see if I can help with your questions with respect to getting an appointment at Mayo Clinic. Did you request an appointment at Mayo Clinic Arizona? Mayo does accept Medicare and you are in state. It may be worth trying again. Here is a link to the online form and contact numbers http://mayocl.in/1mtmR63. You can request an appointment yourself or have your doctor call.

REPLY

Hello @azbluebird,

I’d like to add my welcome, and thank you for sharing your information.

You may wish to view this information, from Mayo Clinic, about gastroparesis, and some relief paths: http://mayocl.in/2sJYZQz
While we wait for Kari to join in, I’d also like to tag @artistgma @lmtuska @evrose23 @jamorris9 @sarah1317 @coffeelatte; do you have any insights, or suggestions that might help @azbluebird find relief from pain?

REPLY

Hi Colleen, I have been trying to get an appointment at Mayo Clinic Arizona since 2013 with my doctors approval and suggestion. It took 3 gastroenterologists 2 1/2 years and me getting down to 94 lbs before my doctors finally figured out it was gastroparesis of unknown origin (not diabetic). Now I have even more unclear and different opinions on what additional tests might be helpful, which new conditions I have, and whether I should have surgery for MALS and other stenosis. My GI doctor said I would have to lose 25-30 lbs before she would send me to a general surgeon. That would mean I would be down to 78 lbs. Scary!! She had already told me 1 1/2 years ago not to come back because she couldn’t help me further. She said my PCP could write RX’s for Domperidone, Tramadol, Zofran, and Linzess. Two weeks ago my PCP said to go back to her any way because I could see her quicker as a “former” patient. PCP was concerned I had pancreatitis again and needing immediate attention.

I called the Arizona phone number in your furnished link and was told again that since I have Medicare (and United Health Care Plan F which pays above the medicare approved amount), that the GI department is not taking any more Medicare patients. Each time I call I ask about getting on a waiting list and they have no list and I was told there would probably never be an opening. I asked her if it would help for them to know that I worked for Mayo in the past before I retired. She said no unless I had the Mayo retirement insurance which I don’t. I also have been a former patient at the Scottsdale and Fountain Hills clinics as well as at the hospital but that didn’t matter either. Being in state didn’t seem to help either.

Her only recommendation was to call Rochester and see if I could get in there. That is really upsetting to a 32 year Arizona resident that knows plenty of part-time winter visitors on medicare that goes to Mayo. When I worked there the ratio of out of state vs in state was high but might not be readily obvious because they use their temporary Arizona address. Many live closer to Rochester during the summers and yet I would have to go to Rochester?

Sorry if I displayed my level of frustration in trying to get good medical advice on conditions that are rare-ish. I have been told before by specialist that they only treat the common conditions within their specialty.

REPLY
@azbluebird

Hi Colleen, I have been trying to get an appointment at Mayo Clinic Arizona since 2013 with my doctors approval and suggestion. It took 3 gastroenterologists 2 1/2 years and me getting down to 94 lbs before my doctors finally figured out it was gastroparesis of unknown origin (not diabetic). Now I have even more unclear and different opinions on what additional tests might be helpful, which new conditions I have, and whether I should have surgery for MALS and other stenosis. My GI doctor said I would have to lose 25-30 lbs before she would send me to a general surgeon. That would mean I would be down to 78 lbs. Scary!! She had already told me 1 1/2 years ago not to come back because she couldn’t help me further. She said my PCP could write RX’s for Domperidone, Tramadol, Zofran, and Linzess. Two weeks ago my PCP said to go back to her any way because I could see her quicker as a “former” patient. PCP was concerned I had pancreatitis again and needing immediate attention.

I called the Arizona phone number in your furnished link and was told again that since I have Medicare (and United Health Care Plan F which pays above the medicare approved amount), that the GI department is not taking any more Medicare patients. Each time I call I ask about getting on a waiting list and they have no list and I was told there would probably never be an opening. I asked her if it would help for them to know that I worked for Mayo in the past before I retired. She said no unless I had the Mayo retirement insurance which I don’t. I also have been a former patient at the Scottsdale and Fountain Hills clinics as well as at the hospital but that didn’t matter either. Being in state didn’t seem to help either.

Her only recommendation was to call Rochester and see if I could get in there. That is really upsetting to a 32 year Arizona resident that knows plenty of part-time winter visitors on medicare that goes to Mayo. When I worked there the ratio of out of state vs in state was high but might not be readily obvious because they use their temporary Arizona address. Many live closer to Rochester during the summers and yet I would have to go to Rochester?

Sorry if I displayed my level of frustration in trying to get good medical advice on conditions that are rare-ish. I have been told before by specialist that they only treat the common conditions within their specialty.

Jump to this post

Hi @azbluebird,

I’m so sorry that you are not getting any answers; I know how frustrating this can be!

I’d like to direct you to some relevant links that might help:

Patient Account Services is Mayo Clinic’s customer contact center to answer your billing inquiries and resolve appointment issues: http://mayocl.in/2sMZ4D1

Billing and Insurance helps you work through the insurance process with your insurer and with Mayo Clinic.
http://mayocl.in/2kk2hF8

You may also wish to view these conversations in the Visiting Mayo Clinic group on Connect:
Medicare and Mayo: http://mayocl.in/2iss7GB
Insurance Question: http://mayocl.in/2tFVNpn
Getting your first appointment: http://mayocl.in/2iNdgpc

REPLY
@azbluebird

Hi Kari, I just discovered your forum and find it a valuable source of information, especially by other patients that have experienced a similar condition. I was diagnosed with gastroparesis 4 years ago and now that the abdominal pain and nausea have worsened they did a CT angio and discovered I have MALS and other related issues. I did research online and thought the doc would recommend surgery to fix the problem but my GI doc said she would not recommend surgery unless I lost 25-30 lbs and was very malnourished. That would leave me at 78 lbs. I went from 128 to 94 lbs while they were diagnosing the gastroparesis. The upper gastric pain will start early in the morning with 1/2 glass of water to take my gastroparesis pill. Even without any food. Now I have no idea what is causing the sudden increased pain – the MALS or the stomach. I am on a very restricted diet and eat extremely small amounts of food to lesson the stomach pain. The only medication I take for the gastroparesis is Domperidone. She has no suggestions on what to do to help alleviate the pain from the Celiac artery compression syndrome and some other issue involving the duodenum.

My PCP said I should probably try to get in to Mayo Clinic but I tried several years ago when my doc couldn’t find out what was wrong for 1 1/2 years, and was told because I have Medicare (and a supplement) they couldn’t see me in the GI department. Since MALS and Gastroparesis is considered rare, do you think I should reapply and see if they would accept me for these conditions. The other health conditions I have that aren’t rare can be treated by regular specialists but the two new conditions they seem to not have a clue.

If not Mayo, maybe you or others are aware of specialists in the greater Phoenix area that know more about these conditions than the average Gastro. I would appreciate any feedback.

Jump to this post

@azbluebird I apologize that it has taken me so long to reply to you. I have been going through MALS symptoms again and every day is a challenge. I have had surgery twice, this time my symptoms are the same and I have lost 25 pound fairly rapidly. I have had a doppler u/s and CT angio which show all my arteries are flowing. I see my vascular surgeon next week, I suspect we will be doing a celiac block to manage the MALS symptoms. Have you had a celiac block yet? Many surgeons will use that to determine if surgery will be successful, amongst other parameters. I do think you should try and get in with a doctor familiar with MALS. Many of us have multiple diagnoses such as gastroparesis and it is hard to figure out what is causing the multitude of symptoms. I hate to have you wait til you are to the point of being malnourished, as that is very difficult to recover from. (In my opinion, that is not a good approach, I would seek the opinion of a vascular surgeon that works with Mals patients). The whole idea of having intervention is to prevent you from having malnutrition. Again, my opinion as a patient that has been malnourished from MALS.

REPLY
@azbluebird

Hi Colleen, I have been trying to get an appointment at Mayo Clinic Arizona since 2013 with my doctors approval and suggestion. It took 3 gastroenterologists 2 1/2 years and me getting down to 94 lbs before my doctors finally figured out it was gastroparesis of unknown origin (not diabetic). Now I have even more unclear and different opinions on what additional tests might be helpful, which new conditions I have, and whether I should have surgery for MALS and other stenosis. My GI doctor said I would have to lose 25-30 lbs before she would send me to a general surgeon. That would mean I would be down to 78 lbs. Scary!! She had already told me 1 1/2 years ago not to come back because she couldn’t help me further. She said my PCP could write RX’s for Domperidone, Tramadol, Zofran, and Linzess. Two weeks ago my PCP said to go back to her any way because I could see her quicker as a “former” patient. PCP was concerned I had pancreatitis again and needing immediate attention.

I called the Arizona phone number in your furnished link and was told again that since I have Medicare (and United Health Care Plan F which pays above the medicare approved amount), that the GI department is not taking any more Medicare patients. Each time I call I ask about getting on a waiting list and they have no list and I was told there would probably never be an opening. I asked her if it would help for them to know that I worked for Mayo in the past before I retired. She said no unless I had the Mayo retirement insurance which I don’t. I also have been a former patient at the Scottsdale and Fountain Hills clinics as well as at the hospital but that didn’t matter either. Being in state didn’t seem to help either.

Her only recommendation was to call Rochester and see if I could get in there. That is really upsetting to a 32 year Arizona resident that knows plenty of part-time winter visitors on medicare that goes to Mayo. When I worked there the ratio of out of state vs in state was high but might not be readily obvious because they use their temporary Arizona address. Many live closer to Rochester during the summers and yet I would have to go to Rochester?

Sorry if I displayed my level of frustration in trying to get good medical advice on conditions that are rare-ish. I have been told before by specialist that they only treat the common conditions within their specialty.

Jump to this post

I am so sorry to hear this and I too would be upset. You need to be seen and if there is someone in Arizona that is familiar with MALS you should not have to travel to Rochester. I did look at a list of physicians from another support group (MALS/PALS on Facebook). These are peer recommended doctors and found someone in Arizona:
Richard Harding: http://www.azassociatedsurgeons.com/richard-harding.html
It looks like he does lap not open surgery, that may be a start? I do not know him and again it is a from a patient list.

I hope that Mayo gets this Medicare situation figured out. It is frustrating for many patients.
https://www.facebook.com/groups/105633382202/10155264954027203/

REPLY
@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!!

Jump to this post

Hello @evileye00,

Welcome to Connect; you’ve asked some great questions. @kariulrich, @lmutska do you have any insights that might help @evileye00‘s daughter?

REPLY
@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!!

Jump to this post

I did have a ganglionectomy and my symptoms have come back twice. (I have had surgery twice) This is such a confusing disease. My first surgery was release of the ligament, bypass of the celiac artery and patch angioplasty of hepato/splenic artery, and removal of ganglion. Second surgery was 3 years later, as a exploratory surgery due to return of symptoms and no found cause (All my imaging came back normal, yet classic symptoms and weight loss). I had revision of my bypass graft, used omental patching to decrease scar tissue build up. (There was A LOT of scar tissue) and remove more ganglion and inject with steroids. Now 2 years later the symptoms are back, all imaging is great. I believe we will be looking at a celiac block to control pain. I see the doctor next week. I have never regretted having any of the surgeries as the time that I had pain free was marvelous! It is hard to tell that soon post op with your daughter what could be causing the pain. I know I had to continue to be careful not to overeat. I still would require frequent meals, but I could eat more. I believe it takes well over a year to fully recover, so give her some time. If the pain is severe and relentless she needs to be seen. Is she having any other symptoms with the pain?

REPLY

Thanks everyone, especially for the surgeons name.

I’m currently waiting to hear back from MALS PALS to be “friend-ed”

REPLY

Hi
I was just diagnosed w mals.i thought i had the flu. Well its been 3.5 years later its a diagnosis of exclusion. Usually lots of tests prior w neg results. There is a site called Mals Pals. its a closed group so you are freeto discus sympotoms. Join itits loaded w info and very caring persons along the same journey.. I belong.feel free to check it out on facebook. It will really explain and helpi beong to it .. Good luck……i also had a Nissen Fundo done a few years ago. Full wrap. Carolina58

REPLY
@carolina58

Hi
I was just diagnosed w mals.i thought i had the flu. Well its been 3.5 years later its a diagnosis of exclusion. Usually lots of tests prior w neg results. There is a site called Mals Pals. its a closed group so you are freeto discus sympotoms. Join itits loaded w info and very caring persons along the same journey.. I belong.feel free to check it out on facebook. It will really explain and helpi beong to it .. Good luck……i also had a Nissen Fundo done a few years ago. Full wrap. Carolina58

Jump to this post

Hi @carolina58! Welcome to Mayo connect, I have been diagnosed with MALS over a decade now and have had 2 surgeries. For me the pain has returned for a third time and I am in the process of ruling out other possibilities. Thank you for mentioning Mals Pals on facebook, my friend Robin is a moderator for that site and I find it to be helpful also. I was so happy when Mayo Connect came on with patient support, as I believe there is room for several online support groups. 3.5 years to be diagnosed! It amazes me how long patients have to endure pain to get relief. How are you doing since your surgery? Have you had any pain return?

REPLY
Please login or register to post a reply.