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?

@racheldmark

@ukmalsman @kariulrich

Sorry, I meant to answer your questions about the Cancer surgeon and resent tests sooner! It is painful for Lou to talk about these thingsk about because looking back there are so many "what if's" and second guessing of everything that led him to this point. I don't want other's to suffer in the same way, so I will do my best to answer them. Please just understand that he is a bit sensitive to aggressive inquires, and I don't want him to feel that I am admonishing him for his choices or circumstances. I am putting together a write up of his medical history, and I will share it here when I have more complete information.

In answer to some of your questions, here is what I know:

> "why was there a Cancer surgeon in the team when your uncle Lou had surgery July 13 2017 at New Mexico Hospital?
Lou chose to be treated in NM by a Cancer surgeon because there are no vascular surgeons in NM, and if he went out of state he would have had to pay for the surgery out of pocket, due to his insurance. I do have access to his medical records and there was no signs of cancer. I also know that it was an open procedure and not laparoscopic.

> "What type of work up has he had since Aug 2017? Any ultrasounds, angiography such at CT or MRI??"
He had a CT scan a few months ago, and it showed that the arteries were not kinked, so there was no follow up for stents.

———-

Mark @ukmalsman

I will also stop oatmeal with berries tomorrow, thank you for that advice!

I can't seem to get Fresubin Jucy in the states, but my dad found that nestle makes a similar product called Boost breeze. Looking at Fresubin Jucy, the nutritional panel looks comparable. We are getting the Resource 2.0 that has no fiber, but I think we are open to trying something different since we can't really be sure if this has been working well or not.

I wish there was more time and room for experimentation, like you did on yourself.

We just ordered a case of Breeze and expedited it. My primary focus right now is to help reduce pain, and find foods that he can eat.

———–

Thank you all, for your continued help and support. I return to NM tomorrow afternoon with more information in hand and that feels better.

–Rachel

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Hi Rachel @racheldmark

As @kariulrich said share what you feels is comfortable both for you and your uncle. You wont need to talk to your uncle if you have access to his records. Something else I thought of, if your uncle has a blender at home you can increase his meal size by blending his food and turning it into soup. Blend cooked white rice, potato no skin and chicken add the chicken stock to thin down to a soup consistency. Hopefully he will be able to eat more and it will be more delicate on his digestive system.

For breakfast you could blend some boiled eggs add a little vegetable stock to thin down and spread on white bread, (most vegetable stock has zero dietary fiber.)

Mark

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@ukmalsman

Hi Rachel @racheldmark

As @kariulrich said share what you feels is comfortable both for you and your uncle. You wont need to talk to your uncle if you have access to his records. Something else I thought of, if your uncle has a blender at home you can increase his meal size by blending his food and turning it into soup. Blend cooked white rice, potato no skin and chicken add the chicken stock to thin down to a soup consistency. Hopefully he will be able to eat more and it will be more delicate on his digestive system.

For breakfast you could blend some boiled eggs add a little vegetable stock to thin down and spread on white bread, (most vegetable stock has zero dietary fiber.)

Mark

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@ukmalsman @kariulrich

I am back in NM! To help connect the dots, I asked Lou for his Mayo Clinic user name, @ruudolpho

He is reading your emails and responses along with me, and we are both very touched with all of the information you have given us! I went grocery shopping and picked up more goodies to try. I just served Lou his first bowl of instant mashed potatoes – with butter, coconut/almond milk, and chicken stock – he liked it and he said his pain is very low! This is encouraging.

Is all fiber a big NO-NO? I just bought some baby food of pureed apples and chicken and will hold off on trying it out if it may be an issue.

–Rachel

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@racheldmark

@ukmalsman @kariulrich

I am back in NM! To help connect the dots, I asked Lou for his Mayo Clinic user name, @ruudolpho

He is reading your emails and responses along with me, and we are both very touched with all of the information you have given us! I went grocery shopping and picked up more goodies to try. I just served Lou his first bowl of instant mashed potatoes – with butter, coconut/almond milk, and chicken stock – he liked it and he said his pain is very low! This is encouraging.

Is all fiber a big NO-NO? I just bought some baby food of pureed apples and chicken and will hold off on trying it out if it may be an issue.

–Rachel

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Awesome I was on pure and soft foods for about 6 months and graduated. To the next step. I now can tolerate everything as long it is very small portions 4-6 times a day as tolerated. There is hope keep it up.

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Hey everyone,

This is a new topic of conversation for me, has anyone tried Ketamine infusion treatment for chronic nerve pain reduction?

A friend of mine had amazing results with depression treatment so I thought I would look into it. I just contacted this local clinic and will let you know what I find out. Reading through the Infusion Clinic of Albuquerque's website has extensive documentation on recent research that looks very promising: infusionclinicabq.com/providers

Thanks,
–Rachel

REPLY
@racheldmark

@ukmalsman @kariulrich

I am back in NM! To help connect the dots, I asked Lou for his Mayo Clinic user name, @ruudolpho

He is reading your emails and responses along with me, and we are both very touched with all of the information you have given us! I went grocery shopping and picked up more goodies to try. I just served Lou his first bowl of instant mashed potatoes – with butter, coconut/almond milk, and chicken stock – he liked it and he said his pain is very low! This is encouraging.

Is all fiber a big NO-NO? I just bought some baby food of pureed apples and chicken and will hold off on trying it out if it may be an issue.

–Rachel

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Hi @racheldmark

Fiber is a definite NO at the moment. Fruit in any form is a no at the moment too. No fruit or no veg, fiber, pulses, beans, nuts, seeds.
Veg and fruit that are green have chlorophyll in which we can't digest, even pureed apples may increase his pain. If you can keep his fiber down to a minimal value it should be good for him. I would check the baby food chicken, usually they are whole meals which include veg. Stick to pasta, potato and rice, a little minced chicken for protein. I suggested kids breaded chicken sticks because they are basically made from mashed up chicken reformed into chicken sticks. Stick with the potato for a while to see if the pain gets any better and to allow the fibrous food to get out of his system. Remember take it slowly.

Hi @ruudolpho
Welcome to the website and the MALS family. When you eat do you get pain straight away or after an hour or so. With me the pain would get worse after a couple of hours, some people get pain straight away. When I was doing my research I realized that I was eating the wrong foods twice a day causing a never ending cycle of pain. Drinking water made it worse, from what I researched your bowel pulls in water to aid in digestion. The best way to put it is imagine your gut as a furnace and the flames are the pain you feel, white foods are paper, fast burning little flames, hard to digest foods like fiber and fatty fast foods are like wood and coal burning hotter for longer with bigger flames. Water acts like the accelerant gasoline, on paper it makes little difference, however gasoline on coal/wood your furnace is burning at its peak with huge flames. Great for a healthy person, that's what they need day to day but not so great for MALs sufferers. For MALs sufferers the furnace needs to burn low and steady.

Your first meal is encouraging lets hope it continues.

Mark

REPLY
@racheldmark

Hey everyone,

This is a new topic of conversation for me, has anyone tried Ketamine infusion treatment for chronic nerve pain reduction?

A friend of mine had amazing results with depression treatment so I thought I would look into it. I just contacted this local clinic and will let you know what I find out. Reading through the Infusion Clinic of Albuquerque's website has extensive documentation on recent research that looks very promising: infusionclinicabq.com/providers

Thanks,
–Rachel

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Thank you for sharing the link, I have had not read much up on it, but it sure seems like it is helping so many people! Thanks again Rachel!

REPLY
@racheldmark

@ukmalsman @kariulrich

I am back in NM! To help connect the dots, I asked Lou for his Mayo Clinic user name, @ruudolpho

He is reading your emails and responses along with me, and we are both very touched with all of the information you have given us! I went grocery shopping and picked up more goodies to try. I just served Lou his first bowl of instant mashed potatoes – with butter, coconut/almond milk, and chicken stock – he liked it and he said his pain is very low! This is encouraging.

Is all fiber a big NO-NO? I just bought some baby food of pureed apples and chicken and will hold off on trying it out if it may be an issue.

–Rachel

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Rachel! I did not realize your uncle was @ruudolpho! Lou, I did not put you and Rachel together for some reason. I have been thinking about you so much wondering how you were doing, you are constantly in my thoughts…we have struggled so many times together through the pain and weakness. It is such a honor to have Rachel on here and getting to know her also. My experience with Fiber has been good, with my MALS I get horrific diarrhea and being on tramadol helps that (as constipation is a side effect) it does tend to slow down my gut, I do use Gummy Fiber with D3, it is the only fiber I can tolerate. I get it from amazon, they do sell it at some drug stores https://www.amazon.com/Sundown-Naturals®-Fiber-Vitamin-Gummies/dp/B00DKN8E0M/ref=sr_1_3_a_it?ie=UTF8&qid=1544240861&sr=8-3&keywords=fiber+gummies+with+vitamin+d

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Found this article on Nausea..had a few suggestions that I had not heard of thought this might be helpful to our group: http://theseatedview.com/2018/07/11-tips-to-deal-with-nausea-when-you-have-a-chronic-illness.html

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@kariulrich

Found this article on Nausea..had a few suggestions that I had not heard of thought this might be helpful to our group: http://theseatedview.com/2018/07/11-tips-to-deal-with-nausea-when-you-have-a-chronic-illness.html

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I have used nausea bands. Elastic wristbands with a small ball- like acupuncture.

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@astaingegerdm

I have used nausea bands. Elastic wristbands with a small ball- like acupuncture.

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Any work better than others for you? I have not used nausea bands in years, but would like to try them again. It seems motion sickness gets the best of me in the car, especially on an empty stomach… and well…. lol most of the time my stomach is empty because of the MALS! HA!

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@kariulrich

Any work better than others for you? I have not used nausea bands in years, but would like to try them again. It seems motion sickness gets the best of me in the car, especially on an empty stomach… and well…. lol most of the time my stomach is empty because of the MALS! HA!

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I have only found one type of nausea bands in our drug stores. It’s a good supplement to other treatments. Takes the edge off nausea enough so I could function. Ginger was also important.
Saved Zofran for worst times because of its constipating effect. It really works very well otherwise!

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I have a CT scan done for a cough and the doctor found the typical hook on the image. So they referred me out and those doctors ran some tests. The LV Ultraaound reflects 70% of velocity flow with experation. So they told me I am only getting 30% blood through my celiac artery. Will my other arteries compensate? They want to do surgery but I am hesitant. Will I still need to do surgery if my velocity is 70% and little to no symptoms? Will the loss of blood flow to that area get worse if I don’t have surgery? Can I live like that without surgery?@kariulrich

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@103196

I have a CT scan done for a cough and the doctor found the typical hook on the image. So they referred me out and those doctors ran some tests. The LV Ultraaound reflects 70% of velocity flow with experation. So they told me I am only getting 30% blood through my celiac artery. Will my other arteries compensate? They want to do surgery but I am hesitant. Will I still need to do surgery if my velocity is 70% and little to no symptoms? Will the loss of blood flow to that area get worse if I don’t have surgery? Can I live like that without surgery?@kariulrich

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It can feel scary right away when you get a MALS diagnosis but know that you do have time to educate yourself about many important things: reputable MALS surgeons, surgery options (lap, robotic, open), pros and cons of surgery, management of MALS symptoms. Many people have jumped too quickly and are suffering greatly now. You can find documents about MALS and doctor’s lists on the MALS Awareness Facebook page. Read members’ stories and learn about reputable doctors in Connecticut, Cleveland, and Texas…
MALS is serious and unfortunately many doctors are not knowledgeable, even if they think they are; therefore, it is imparative that you take the time to educate yourself. MALS Awareness is the best resource I have found and I have spent plenty of time searching professional journals and have joined other MALS groups.
You likely have had this many, many years, so you do have some time to learn more about it as long as you are not suffering intensely right now. Self advocacy is essential right now.
I wish you well.

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@sclindajanssen

It can feel scary right away when you get a MALS diagnosis but know that you do have time to educate yourself about many important things: reputable MALS surgeons, surgery options (lap, robotic, open), pros and cons of surgery, management of MALS symptoms. Many people have jumped too quickly and are suffering greatly now. You can find documents about MALS and doctor’s lists on the MALS Awareness Facebook page. Read members’ stories and learn about reputable doctors in Connecticut, Cleveland, and Texas…
MALS is serious and unfortunately many doctors are not knowledgeable, even if they think they are; therefore, it is imparative that you take the time to educate yourself. MALS Awareness is the best resource I have found and I have spent plenty of time searching professional journals and have joined other MALS groups.
You likely have had this many, many years, so you do have some time to learn more about it as long as you are not suffering intensely right now. Self advocacy is essential right now.
I wish you well.

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Thank you for your reply the info is much appreciated. Can you give me an idea which hospitals have experienced doctors whom have performed this surgery before? My surgeon said he has only performed once. But it really sounds like he has not due to the amount of surgeons that will be in the room.

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