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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Kanaaz Pereira, Connect Moderator | @kanaazpereira | May 2, 2018
In reply to @susanf "Okay here goes. After a year of up and down pain and ER trips. The past..." + (show)
@susanf

Okay here goes. After a year of up and down pain and ER trips. The past 3 months of Dr. appointments, GI, every scope, ultrasound sound, CT scan to be done. Of course as all of you know to be told everything is normal. Until a visit to the ER when a Dr. there suggested to look for Mesenteric ischemia.
This test shot me to a referral to a vascular surgeon who then did an ultrasound. Who shot me a referral to a general surgeon. With a a diagnosis of MALS.
Here I sit in pain awaiting a consult in 4 days for what looks like a extremely scary surgery. I can't eat anything without pain!
I have lost a total of 27 pounds to date. 3 pounds in the past week. 5 pounds the week before.
Now I'm not a large woman to start with so I don't think losing too much more will be very healthy. I'm weak, tired and spend a lot of time in bed.
I want to know what questions to ask the surgeon. I have already had two really big scary surgeries in the last 2 years. I made it through those, I don't want to die from some darn strange stomach surgery.
HELP
Thank you in advance for any advice or comfort
Susan

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Welcome @grandmajo,

I'm so glad you've joined the Connect community. I'd like to introduce you to @susanf and @jmmb as they've both written about mesenteric ischemia, and also to Mentor @kariulrich who may have more insights to share.

I encourage you to read this information about the chronic mesenteric ischemia; both links are from current resources, and I hope they will give you some more information:
– https://www.uptodate.com/contents/chronic-mesenteric-ischemia
– http://www.acc.org/latest-in-cardiology/articles/2016/12/20/07/12/role-of-endovascular-therapies-in-chronic-mesenteric-ischemia

Another incredibly informative resource is this discussion on Connect:
– https://connect.mayoclinic.org/discussion/we-need-awarenesspreventionresearching-on-very-rare-condition-smas-superior-mesenteric-artery-syndro/

@grandmajo, when were you diagnosed with mesenteric ischemia? Mesenteric ischemia can be either chronic or acute; have you been told what type of ischemia you have?

REPLY
grandmajo | @grandmajo | May 4, 2018

I have been searching for information, or anyone, who has experienced chronic Mesenteric ischemia. Dod you have surgery or stents? The that I have seen wants to eait 6 months to see if I lose more weight, or start having worse pain and nausea. Somehow I don't think waiting until I am in such bad shape to do something about it is going to work for me. I am not comfortable with this.
I can find no support groups for this diagnosis, and although it is a rare condition, there must be someone that has maybe a similar experience.

REPLY
2 replies
Moderator
Lisa Lucier, Moderator | @lisalucier | May 4, 2018
In reply to @grandmajo "I have been searching for information, or anyone, who has experienced chronic Mesenteric ischemia. Dod you..." + (show)
@grandmajo

I have been searching for information, or anyone, who has experienced chronic Mesenteric ischemia. Dod you have surgery or stents? The that I have seen wants to eait 6 months to see if I lose more weight, or start having worse pain and nausea. Somehow I don't think waiting until I am in such bad shape to do something about it is going to work for me. I am not comfortable with this.
I can find no support groups for this diagnosis, and although it is a rare condition, there must be someone that has maybe a similar experience.

Jump to this post

Hi, @grandmajo -- I merged your post with this one, as I think your best connections are here, like @kariulrich, @susanf and @jmmb. Hoping they can share what they know about mesenteric ischemia and whether they may have had surgery or stents or may have known others who did. I also trust they might be able to help you with the further information you are seeking.

How have you been feeling?

REPLY
grandmajo | @grandmajo | May 5, 2018
In reply to @susanf "Okay here goes. After a year of up and down pain and ER trips. The past..." + (show)
@susanf

Okay here goes. After a year of up and down pain and ER trips. The past 3 months of Dr. appointments, GI, every scope, ultrasound sound, CT scan to be done. Of course as all of you know to be told everything is normal. Until a visit to the ER when a Dr. there suggested to look for Mesenteric ischemia.
This test shot me to a referral to a vascular surgeon who then did an ultrasound. Who shot me a referral to a general surgeon. With a a diagnosis of MALS.
Here I sit in pain awaiting a consult in 4 days for what looks like a extremely scary surgery. I can't eat anything without pain!
I have lost a total of 27 pounds to date. 3 pounds in the past week. 5 pounds the week before.
Now I'm not a large woman to start with so I don't think losing too much more will be very healthy. I'm weak, tired and spend a lot of time in bed.
I want to know what questions to ask the surgeon. I have already had two really big scary surgeries in the last 2 years. I made it through those, I don't want to die from some darn strange stomach surgery.
HELP
Thank you in advance for any advice or comfort
Susan

Jump to this post

Hello, I was diagnosed about a month ago in the ER. I had been having pain in my abdomen for several days and a CT scan showed occlusion of the celiac and Mesenteric arteries. I have been to a vascular surgeon locally and also one at Northwestern Memorial in Chicago, Illinois. Neither of them want to do surgery until I start losing a lot of weight, severe nausea, etc. It's mind boggling and I don't know anyone who has dealt with this. It is called chronic Mesenteric aschemia.

REPLY
techchick1025 | @techchick1025 | May 6, 2018
In reply to @pfpurple "Does anyone know of a source list of surgeons with MALS experience? I am in San..." + (show)
@pfpurple

Does anyone know of a source list of surgeons with MALS experience? I am in San Diego and would love to find someone here. I do know of a couple of surgeons in Los Angeles, but I learned of them in very roundabout ways. Would love to know how most people find their surgeons. TIA!

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Join MALS PALS on FB. LInk for DRs : https://lookaside.fbsbx.com/file/UPDATED%20MALS%20FRIENDLY%20SURGEON%20LIST%204.8.18.pdf?token=AWxtzNNYXTlrohHSHm4y53DxSTc_eGsDgc7tQrC2EVwbmc0Gh_CxjIyucR2xemW-Yoj4bnlxYOSX78ymPeCrJ1oYOAhJLTkD7T4nqmkM36mAY0lfcUvra-23sCyjmNal2SndgJ_W9WUpONepgGWQChsPIrwLXIFojWJMmrJ-7jVyn3Zw_UcNgHeZ96_U4V_VOP5Dli3rOqcXR3kUD_xRRfv5

REPLY
jmmb | @jmmb | May 6, 2018
In reply to @susanf "Okay here goes. After a year of up and down pain and ER trips. The past..." + (show)
@susanf

Okay here goes. After a year of up and down pain and ER trips. The past 3 months of Dr. appointments, GI, every scope, ultrasound sound, CT scan to be done. Of course as all of you know to be told everything is normal. Until a visit to the ER when a Dr. there suggested to look for Mesenteric ischemia.
This test shot me to a referral to a vascular surgeon who then did an ultrasound. Who shot me a referral to a general surgeon. With a a diagnosis of MALS.
Here I sit in pain awaiting a consult in 4 days for what looks like a extremely scary surgery. I can't eat anything without pain!
I have lost a total of 27 pounds to date. 3 pounds in the past week. 5 pounds the week before.
Now I'm not a large woman to start with so I don't think losing too much more will be very healthy. I'm weak, tired and spend a lot of time in bed.
I want to know what questions to ask the surgeon. I have already had two really big scary surgeries in the last 2 years. I made it through those, I don't want to die from some darn strange stomach surgery.
HELP
Thank you in advance for any advice or comfort
Susan

Jump to this post

Hello @grandmajo I have heard that a lot and it does seem odd. I don't know if it is because it is a major surgery or what but to me the healthier you are the better to do it I would think. I had kind of the same situation. I was in the er and ct showed my arteries were 'narrowed' as they said and I should see a vascular surgeon. My pcp set me up and that visit they did the Doppler ultra sound and he said I needed surgery asap. Both my celiac and sma velocities were over 600 or 700 don't remember, but he said literally off the chart that he had to make up a number. Did you have anything done that showed the velocities. If the numbers aren't that high they will say you are getting enough blood flow from collateral veins, but when you have 2 arteries involved I wonder. Also there is the ganglion nerves. Some people don't even have any occlusion, but the nerves cause the pain and they need to be removed. You need to find an experienced MALS surgeon which is hard. Have you joined the Facebook group MALS PALS? they have a list of surgeons by state and are a great resource. My surgery was done in AZ. Then a year later stents put in then just a few months a balloon in the celiac. I still have pain. I am not sure if the nerves were removed. I didn't know anything about this until I joined here and MALS PALS. My surgeon is a Baylor College now in Texas and I do have a call into him for a consult. I don't know if that helps any. I would ask for ct with contrast, Doppler ultra sound, and ct angiogram would be best. Good luck and let me know if you have any more questions. I am no expert but been dealing with this for over 4 years.....

REPLY
grandmajo | @grandmajo | May 6, 2018
In reply to @susanf "Okay here goes. After a year of up and down pain and ER trips. The past..." + (show)
@susanf

Okay here goes. After a year of up and down pain and ER trips. The past 3 months of Dr. appointments, GI, every scope, ultrasound sound, CT scan to be done. Of course as all of you know to be told everything is normal. Until a visit to the ER when a Dr. there suggested to look for Mesenteric ischemia.
This test shot me to a referral to a vascular surgeon who then did an ultrasound. Who shot me a referral to a general surgeon. With a a diagnosis of MALS.
Here I sit in pain awaiting a consult in 4 days for what looks like a extremely scary surgery. I can't eat anything without pain!
I have lost a total of 27 pounds to date. 3 pounds in the past week. 5 pounds the week before.
Now I'm not a large woman to start with so I don't think losing too much more will be very healthy. I'm weak, tired and spend a lot of time in bed.
I want to know what questions to ask the surgeon. I have already had two really big scary surgeries in the last 2 years. I made it through those, I don't want to die from some darn strange stomach surgery.
HELP
Thank you in advance for any advice or comfort
Susan

Jump to this post

I haven't heard anything about velocity, I just know that the celiac and Mesenteric arteries are completely occluded and the third artery is %75 blocked. I am having my scans sent to Mayo in Rochester to get their advice and see what they may be able to do. I have read that they treat all Mesenteric Aschemia on some level because it may cause a blood clot in small intestines. My pain is hard to predict, it's off and on. I'm not nauseated all the time an I eat small meals and not loosing any weight yet. Collateral arteries are supplying maybe %50 or so of blood flow that I actually need.

REPLY
Kari Ulrich, Alumna Mentor | @kariulrich | May 10, 2018
In reply to @susanf "Okay here goes. After a year of up and down pain and ER trips. The past..." + (show)
@susanf

Okay here goes. After a year of up and down pain and ER trips. The past 3 months of Dr. appointments, GI, every scope, ultrasound sound, CT scan to be done. Of course as all of you know to be told everything is normal. Until a visit to the ER when a Dr. there suggested to look for Mesenteric ischemia.
This test shot me to a referral to a vascular surgeon who then did an ultrasound. Who shot me a referral to a general surgeon. With a a diagnosis of MALS.
Here I sit in pain awaiting a consult in 4 days for what looks like a extremely scary surgery. I can't eat anything without pain!
I have lost a total of 27 pounds to date. 3 pounds in the past week. 5 pounds the week before.
Now I'm not a large woman to start with so I don't think losing too much more will be very healthy. I'm weak, tired and spend a lot of time in bed.
I want to know what questions to ask the surgeon. I have already had two really big scary surgeries in the last 2 years. I made it through those, I don't want to die from some darn strange stomach surgery.
HELP
Thank you in advance for any advice or comfort
Susan

Jump to this post

@grandmajo very nice to meet you, and I apologize in the delay of getting back to you. Did your vascular surgeons give you a reason why to wait to have surgery. Please do not wait until it becomes an emergency, and you are correct that you can end up with organ damage if you wait to long. What symptoms are you experiencing? Did the doctors explain what to expect if the symptoms get worse and when to notify them? Sometimes we have lived with the symptoms for so long, we get accustomed to living in daily pain. We may not even realize how severe our symptoms really are until damage is done. I am guessing the doctors told you that you have good collateral flow, which is good... however it is also a sign that your organs are not being supplied properly with blood. Are you on any vasodilators?

REPLY
Kari Ulrich, Alumna Mentor | @kariulrich | May 10, 2018
In reply to @grandmajo "I have been searching for information, or anyone, who has experienced chronic Mesenteric ischemia. Dod you..." + (show)
@grandmajo

I have been searching for information, or anyone, who has experienced chronic Mesenteric ischemia. Dod you have surgery or stents? The that I have seen wants to eait 6 months to see if I lose more weight, or start having worse pain and nausea. Somehow I don't think waiting until I am in such bad shape to do something about it is going to work for me. I am not comfortable with this.
I can find no support groups for this diagnosis, and although it is a rare condition, there must be someone that has maybe a similar experience.

Jump to this post

@grandmajo ... I replied to an earlier message. I am familiar with mesenteric ischemia, I have ischemia also have had surgery twice. Do you know if there are several arteries involved? Have you had a cath angiogram with pressures?

REPLY
Kari Ulrich, Alumna Mentor | @kariulrich | May 10, 2018
In reply to @dave06351 "Hey, So my back is absolutely RIPPING. Has anyone else experienced this as a part of..." + (show)
@dave06351

Hey, So my back is absolutely RIPPING. Has anyone else experienced this as a part of MALS? This Mid-back pain is excruciating and I find it hard to believe that it's from the MALS.

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When my pain was at it worse it would radiate to my back, between the lower part of my shoulder blades. I have heard of other MALS patients with these symptoms and it can be hard to determine if it is cardiac or another artery. How are you doing now?

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