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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Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Dec 31, 2018
In reply to @kariulrich "Found this article on Nausea..had a few suggestions that I had not heard of thought this..." + (show)
@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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1 reply
Kari Ulrich, Alumna Mentor | @kariulrich | Dec 31, 2018

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

REPLY
1 reply
ukmalsman | @ukmalsman | Dec 24, 2018

Hi All

Wishing you all a very happy Festive Season.

Mark

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Kari Ulrich, Alumna Mentor | @kariulrich | Dec 7, 2018
In reply to @racheldmark "@ukmalsman @kariulrich I am back in NM! To help connect the dots, I asked Lou for..." + (show)
@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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Kari Ulrich, Alumna Mentor | @kariulrich | Dec 7, 2018
In reply to @racheldmark "Hey everyone, This is a new topic of conversation for me, has anyone tried Ketamine infusion..." + (show)
@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!

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ukmalsman | @ukmalsman | Dec 7, 2018
In reply to @racheldmark "@ukmalsman @kariulrich I am back in NM! To help connect the dots, I asked Lou for..." + (show)
@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

Jump to this post

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
Rachel | @racheldmark | Dec 7, 2018

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
2 replies
helenannmarie55 | @helenannmarie55 | Dec 7, 2018
In reply to @racheldmark "@ukmalsman @kariulrich I am back in NM! To help connect the dots, I asked Lou for..." + (show)
@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

Jump to this post

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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Rachel | @racheldmark | Dec 7, 2018
In reply to @ukmalsman "Hi Rachel @racheldmark As @kariulrich said share what you feels is comfortable both for you and..." + (show)
@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

Jump to this post

@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

REPLY
3 replies
ukmalsman | @ukmalsman | Dec 7, 2018
In reply to @racheldmark "@ukmalsman @kariulrich Sorry, I meant to answer your questions about the Cancer surgeon and resent tests..." + (show)
@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

REPLY
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