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 All. I was just diagnosed two weeks ago. I spent 8 days in the hospital and had so many tests but MALS was the suspected diagnosis from the initial CT scan in the ER. I’ve have these recurring episodes of gnawing burning pain with eating that make me avoid it every few months for the past few years, along with almost daily nausea and some other issues that most doctors just wrote off as nothing, an ulcer ( none ever showed up), lady problems… so finally having a diagnosis is nice but I’m still lost. I’ve been reading and reading and reading. I’m in Delaware and I want to find a specialist. I’m meeting with a gastro in 2 weeks and one of the 12 doctors on my hospital team next week. But this was all new to them as well. It’s nice to find this page ( I saw it on the foundation website.) Thanks for any o do and support.

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@jessicakristen

Hi All. I was just diagnosed two weeks ago. I spent 8 days in the hospital and had so many tests but MALS was the suspected diagnosis from the initial CT scan in the ER. I’ve have these recurring episodes of gnawing burning pain with eating that make me avoid it every few months for the past few years, along with almost daily nausea and some other issues that most doctors just wrote off as nothing, an ulcer ( none ever showed up), lady problems… so finally having a diagnosis is nice but I’m still lost. I’ve been reading and reading and reading. I’m in Delaware and I want to find a specialist. I’m meeting with a gastro in 2 weeks and one of the 12 doctors on my hospital team next week. But this was all new to them as well. It’s nice to find this page ( I saw it on the foundation website.) Thanks for any o do and support.

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Welcome Jessica! Good to have you here! Sounds like you have had a long road to diagnoses! The pain can be so frustrating, especially after eating and exercise! For me that continues to be a problem, although surgery gave years of being mostly symptom free! Please ask any questions!

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@kariulrich

Welcome Jessica! Good to have you here! Sounds like you have had a long road to diagnoses! The pain can be so frustrating, especially after eating and exercise! For me that continues to be a problem, although surgery gave years of being mostly symptom free! Please ask any questions!

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Thank you for the warm welcome. I’m nervous but hopeful that I can manage this. I’ve been keeping a food and activity journal trying to figure out a best practice until I get some more answers. These conversations have been very helpful to read.

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Hang in there. The diagnosis has been made which can be the hardest part. Now it's getting prepared for surgery. Try to find a surgeon with good experience with MALS. There are those who believe in the Lap method which is less invasive but can present issues later on or there is the open method which allows them to do more with the procedure if needed. I myself had the open method as the ligament was literally wrapped around the artery numerous times. Both are viable options but will needs to be discussed. I did well but was long recovery. Have other conditions as well that have complicated things but now able to eat more volume. Again, hang in there…it does get better.

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@jmmb how are you doing? I have been thinking of you.

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Today I have been thinking about support from friends and family? Outside this group, do you feel you have the support you need? Many of us still struggle years after surgery with symptoms, I know I have. I am so grateful for the surgery, and do not regret it at all, however I find I have not received the aftercare I needed from my healthcare system. I believe so much more can be done. Would love to hear from others when you have a moment.

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@kariulrich

Today I have been thinking about support from friends and family? Outside this group, do you feel you have the support you need? Many of us still struggle years after surgery with symptoms, I know I have. I am so grateful for the surgery, and do not regret it at all, however I find I have not received the aftercare I needed from my healthcare system. I believe so much more can be done. Would love to hear from others when you have a moment.

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Hi Kari,
What symptoms do you still have to deal with? I’m confused about what my body is reacting to. The surgery eliminated the horrible pain after meals, but for years I also have pain in that area after my gallbladder was removed. At the same time I had the excruciating attacks of pain that I now realize must have been related to MALS. On top of that I developed autoimmune illness of my entire GI tract, now healed.
I think it would have been helpful to have nutritional/ dietary advice. There were so many foods I avoided and couldn’t eat. I’m actually surprised not one physician ever brought it up. In addition- living with a chronic illness when you appear well is very frustrating.

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@astaingegerdm

Hi Kari,
What symptoms do you still have to deal with? I’m confused about what my body is reacting to. The surgery eliminated the horrible pain after meals, but for years I also have pain in that area after my gallbladder was removed. At the same time I had the excruciating attacks of pain that I now realize must have been related to MALS. On top of that I developed autoimmune illness of my entire GI tract, now healed.
I think it would have been helpful to have nutritional/ dietary advice. There were so many foods I avoided and couldn’t eat. I’m actually surprised not one physician ever brought it up. In addition- living with a chronic illness when you appear well is very frustrating.

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I have MALS too but mine is due from having HEDS and I cannot have the surgery

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@astaingegerdm

Hi Kari,
What symptoms do you still have to deal with? I’m confused about what my body is reacting to. The surgery eliminated the horrible pain after meals, but for years I also have pain in that area after my gallbladder was removed. At the same time I had the excruciating attacks of pain that I now realize must have been related to MALS. On top of that I developed autoimmune illness of my entire GI tract, now healed.
I think it would have been helpful to have nutritional/ dietary advice. There were so many foods I avoided and couldn’t eat. I’m actually surprised not one physician ever brought it up. In addition- living with a chronic illness when you appear well is very frustrating.

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I agree with you 100 percent!! MALS patients should consult a dietician before and after surgery … and if not a surgical candidate a dietician can help. So many of us suffer from malnutrition without even realizing it.

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@redhead63

I have MALS too but mine is due from having HEDS and I cannot have the surgery

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HEDS?? Hypermobile EDS???!!! I have that. May I ask why you are not a surgical candidate? Is it due to poor healing? I would love to hear more about your experience if you would not mind sharing it with me.

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@kariulrich

@jmmb how are you doing? I have been thinking of you.

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This is so freaky!!! This morning I was thinking of you, I swear!! I have been so wrapped up with my health in other areas, the MALS has been on the back burner, But this morning I don't know why, I was like, oh I should send Kari a message to see how she is doing…I've been so busy all day and when I saw the email this morning I was like no way!! This is the first chance I had to sit down.
Well I dont' even remember what you know. I have continued to be sick, more than stomach issues. So when you recommended mals pals people there suggested my symptoms to be POTS and dysautonomia and they were right. So thank you because I would never have known these things!! I am on 2 liters of IV hydration daily. I am still dehydrated and they don't know why. Kidney dr. is sending me to mayo to see her mentor because she just can't figure it out. I am peeing out my sodium, but my blood sodium is ok, and I am peeing way to much but mostly at night. I can't get in until Oct. 22. Trying some meds for the pots/dysautonomia. Iron was low now that is ok. Had mri of head and back and my neck is really messed up, so in PT.
My daughter was suppose to get married in June in Jamaica, but she cancelled because of my health. They are getting married Oct. 4 on the beach in San Diego. This way I can drive and take all my hydration…..
How are you doing???

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Good morning, I stumbled across this group while trying to gain more info about MALS. A little background info my daughter who is 22 just had a diagnosis of MALS and chronic mesenteric ischemia confirmed last night at U of M hospital. She has a GI follow up today as well as follow up with vascular surgeons in the coming days. We spent her sophomore and junior years of HS in and out of CH Wisconsin due to severe abdominal pain/swelling and an inability to keep anything down. A CT back then confirmed SMA and an NJ tube was placed for 3 months. The GI she was assigned for follow up did not think it was truly SMA he was convinced the vomiting and pain had more to do with pain signals from brain to gut and so she was prescribed increasingly higher doses of Zofran, Tramadol and amitriptyline to manage symptoms as well as therapy to teach her coping mechanisms. This continued through high school and both NJ and Ng tubes were periodically placed for shorter stints. For a child who had never thrown up before age 15 periods of extreme pain and recurrent vomiting became her new normal. To complicate matters she was diagnosed with Rheumatoid arthritis at age 11 and later in HS with systemic Lupus so whenever GI symptoms got worse doctors were quick to attribute it to Lupus flares and rarely looked further. Problems continued sporadically through college eventually causing her to give up being a collegiate athlete. She graduated this past May and moved to Ann Arbor in August to start life as an “adult” but has landed in the ER 3x this month. CT on 2nd visit showed compression of celiac artery. Duplex ultrasound in ER yesterday confirmed MALS as well as stenosis of mescenteric artery. Vascular surgeons who saw her in ER yesterday said CHW should have placed a stent when SMA syndrome was initially suspected. Sorry that was really lengthy. Would appreciate any insight into what we can expect on the road ahead. Such as realistic recovery times and how much support she may need post surgery as I am a single parent and she is now living alone almost 6 hours from me. Thankfully I have a very supportive boss and may be able to do some work remotely but to further complicate matters I am supposed to have shoulder surgery in the coming month but that may just need to be postponed

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@jmorgs

Good morning, I stumbled across this group while trying to gain more info about MALS. A little background info my daughter who is 22 just had a diagnosis of MALS and chronic mesenteric ischemia confirmed last night at U of M hospital. She has a GI follow up today as well as follow up with vascular surgeons in the coming days. We spent her sophomore and junior years of HS in and out of CH Wisconsin due to severe abdominal pain/swelling and an inability to keep anything down. A CT back then confirmed SMA and an NJ tube was placed for 3 months. The GI she was assigned for follow up did not think it was truly SMA he was convinced the vomiting and pain had more to do with pain signals from brain to gut and so she was prescribed increasingly higher doses of Zofran, Tramadol and amitriptyline to manage symptoms as well as therapy to teach her coping mechanisms. This continued through high school and both NJ and Ng tubes were periodically placed for shorter stints. For a child who had never thrown up before age 15 periods of extreme pain and recurrent vomiting became her new normal. To complicate matters she was diagnosed with Rheumatoid arthritis at age 11 and later in HS with systemic Lupus so whenever GI symptoms got worse doctors were quick to attribute it to Lupus flares and rarely looked further. Problems continued sporadically through college eventually causing her to give up being a collegiate athlete. She graduated this past May and moved to Ann Arbor in August to start life as an “adult” but has landed in the ER 3x this month. CT on 2nd visit showed compression of celiac artery. Duplex ultrasound in ER yesterday confirmed MALS as well as stenosis of mescenteric artery. Vascular surgeons who saw her in ER yesterday said CHW should have placed a stent when SMA syndrome was initially suspected. Sorry that was really lengthy. Would appreciate any insight into what we can expect on the road ahead. Such as realistic recovery times and how much support she may need post surgery as I am a single parent and she is now living alone almost 6 hours from me. Thankfully I have a very supportive boss and may be able to do some work remotely but to further complicate matters I am supposed to have shoulder surgery in the coming month but that may just need to be postponed

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@jmorgs I am so sorry to hear what you and your daughter are going through, and it looks like you have a bit of rough journey ahead but you are not alone. This is an awesome group of people, many who have been through what you and your daughter are experiencing now. She sounds like she is a strong surgical candidate and that surgery could minimize her symptoms greatly. Because of her added diagnosis it is always a bit more challenging. Recovery for me was long, however I had an open surgery/bypass. I think many people have long recovery, it is much like having a complete hysterectomy for open surgery. 6-8 weeks of the initial recovery then it is slow going but progressive change of symptoms over a years time. It is a differ recovery in that you feel better after surgery, but your body takes time to adjust to having blood flow. Many people who have surgery ( who don't post here) are completely recovered and do well after surgery with no residual effects, so please keep that in mind when reading posts. I just like to mention that because it can be overwhelming with reading others experiences.

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@jmmb

This is so freaky!!! This morning I was thinking of you, I swear!! I have been so wrapped up with my health in other areas, the MALS has been on the back burner, But this morning I don't know why, I was like, oh I should send Kari a message to see how she is doing…I've been so busy all day and when I saw the email this morning I was like no way!! This is the first chance I had to sit down.
Well I dont' even remember what you know. I have continued to be sick, more than stomach issues. So when you recommended mals pals people there suggested my symptoms to be POTS and dysautonomia and they were right. So thank you because I would never have known these things!! I am on 2 liters of IV hydration daily. I am still dehydrated and they don't know why. Kidney dr. is sending me to mayo to see her mentor because she just can't figure it out. I am peeing out my sodium, but my blood sodium is ok, and I am peeing way to much but mostly at night. I can't get in until Oct. 22. Trying some meds for the pots/dysautonomia. Iron was low now that is ok. Had mri of head and back and my neck is really messed up, so in PT.
My daughter was suppose to get married in June in Jamaica, but she cancelled because of my health. They are getting married Oct. 4 on the beach in San Diego. This way I can drive and take all my hydration…..
How are you doing???

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@jmmb !!!!!! OH MY!!!! a lot has transpired since we last talked. I was diagnosed with POTS years ago, not as severe as what you are going through! I often thought if I could just go in for an IV occasionally I wonder if I would feel better. So strange about your sodium!! I seen Sandra Taylor at Mayo- she is a Nephrologist and she was incredible! So sorry to hear about your daughter's wedding, but amazing that she changed it to San Diego! Refresh my memory, do you have joint problems? I am remembering something autoimmune?? I am just curious if yours MALS, Dysautonomia is also related to Ehlers-Danlos? That seems to be a common triad I have noticed in a subgroup of us.

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@astaingegerdm

Hi Kari,
What symptoms do you still have to deal with? I’m confused about what my body is reacting to. The surgery eliminated the horrible pain after meals, but for years I also have pain in that area after my gallbladder was removed. At the same time I had the excruciating attacks of pain that I now realize must have been related to MALS. On top of that I developed autoimmune illness of my entire GI tract, now healed.
I think it would have been helpful to have nutritional/ dietary advice. There were so many foods I avoided and couldn’t eat. I’m actually surprised not one physician ever brought it up. In addition- living with a chronic illness when you appear well is very frustrating.

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Hi Ingegerd, I'm getting a little tangental here, but thank you for your reply to an earlier post. I had never heard of MALS before and have been reading about it. It does fit the pattern of what I experience to some degree – eating and activity, particularly bending over type things, exacerbate my pain. Not immediate, i.e. when I am doing it, but later on. I've always found this interesting but never found anything else ever talking about a relationship.

One thing I don't have however is vomiting. I have nausea, but don't vomit. It seems that vomiting is listed as a classic symptom with MALS (as well as mesenteric ischemia). This leads me to think (and I know my Dr. will think 🙂 ) that this couldn't be my problem. Did you have vomiting?

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