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Apr 8, 2019 · Median Arcuate Ligament Syndrome (MALS) in Digestive Health

Hi @kariulrich
Although the article seems to champion surgery for MALs sufferers the fact that it couples psychiatric comorbidities with MALs sends out the wrong impression. With such a low amount of people in the study group percentages become skewed giving rise to conclusions that are somewhat biased. A larger study group would have been ideal. We all know how much specialist love to drop percentages as evidence to justify what they are saying. A greater concern is there is no mention of a control group in the study. This would tell us if psychiatric comorbidities are a factor in the end result and quality of life of participants.

I’m not sure if you had a look at the evaluating factors for the psychiatric comorbidities; Beck’s Anxiety Inventory, Beck’s Depression Inventory and the Eating Disorder Examination Questionaire. These indexes are suitable for workplace and everyday environments, they are hardly suitable for a MALs sufferer. Many of the questions we would score high because of the condition not because how we feel.

As you mentioned many MALs sufferers may have suffered from situational anxiety and depression; a subject I brought up a while a go. Doctors need to understand that every sufferer is different and may suffer at some point to some degree a state of anxiety or depression; I agree we need to be in the right frame of mind preoperatively in order to achieve greater success in the degree of quality of life postoperatively.

The length of time and degree of painfulness the person has suffered may well determine the frame of mind that person is in. I look at MALs sufferers as long term torture victims. First and foremost we are not in control, We don’t always know when it will hit, we don’t know just how much pain will be inflicted and we never know for how long it will last; all the hallmarks of being repeatedly tortured. All this and yet most of us still smile and generally hide our painful nature.

We are so widely connected around the world a better more comprehensive study could be devised. I really think we deserve more than a 100 person study!

Apr 8, 2019 · Median Arcuate Ligament Syndrome (MALS) in Digestive Health

I agree @sclindajanssen there is a concern that the study couples psychiatric problems with MALs diagnosis, doctors could be misinterpreting the study as further evidence that a lot of it is in the mind of the patient. At worst delay treatment in favour of psychiatric evaluation and therapy. As a whole the article does support the use of surgery to improve quality of life for a MALs sufferer. The psychiatric tendencies they referred to seem to be about substance and alcohol abuse rather than mental health issues. There are a few concerns which I address in a reply to @kariulrich

Apr 7, 2019 · Median Arcuate Ligament Syndrome (MALS) in Digestive Health

Hi @kariulrich

It’s been a long time since I have been on here due to poor health. December was the last time I was able to log in so I have a lot to catch up on. I was wondering if you have heard anything from @racheldmark, how is her uncle @ruudolpho has he made any improvements since December?

Dec 24, 2018 · Median Arcuate Ligament Syndrome (MALS) in Digestive Health

Hi All

Wishing you all a very happy Festive Season.

Mark

Dec 7, 2018 · Median Arcuate Ligament Syndrome (MALS) in Digestive Health

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

Dec 7, 2018 · Median Arcuate Ligament Syndrome (MALS) in Digestive Health

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

Dec 6, 2018 · Median Arcuate Ligament Syndrome (MALS) in Digestive Health

Hi Rachel

I know this question has been asked already, but why was there a Cancer surgeon in the team when your uncle Lou had surgery July 13 2017 at New Mexico Hospital? Had they found cancer which was treated at the same time? I ask because I know some people will not talk about cancer if they have been diagnosed with it; they will hide it from friends and even family. You said you came in late to this so you may not have all the information. I suggest you have a one on one with your uncle and ask him to tell you everything or if he will allow you, go through his medical records.

Dec 6, 2018 · Median Arcuate Ligament Syndrome (MALS) in Digestive Health

Hi Rachel @racheldmark

Thanks for giving us clearer picture of his condition. Your uncle Lou is really in bad shape, I agree with @annief and yourself the hospice looks like it is keeping him alive, focusing on where he is is not important right now. The diet he is on maybe causing the pain, mainly the oatmeal and blueberries both are on the no list. Oats have soluble fiber in it that our small intestines find hard to digest we don't produce the enzyme to break it down. Oats are probably the worst thing on his menu, they made my life hell. It is because they stay in your system for a long time. People eat oats as they slowly release energy over the day and the fiber aids in digestion. You don't want to put anything in his digestive system that isn't easily digested.

For breakfast – white bread toasted with honey, pancakes or waffles made from refined white flour or yogurt without the fruit.
Dinner – pasta, noodles, mashed potato or soft white rice and I would mince the chicken, chicken stock.
dessert – custard, plain sponge pudding.

Right now you need to keep anything that is hard to digest out of his diet. I know the Resource 2.0 helps increase his calorie count but it contains fiber. Drastic steps need to be taken so I would change from Resource 2.0 to Resource Energy which contains no fiber but has less protein and calories.

Fresubin is great but make sure you order the fresubin Jucy, however if you change to Resource Energy which has no fiber you don't need the Fresubin.

When I did my research I came across this on the Mayo site

https://www.mayoclinic.org/healthy-lifestyle/nutrition-and-healthy-eating/in-depth/low-fiber-diet/art-20048511

Although I can tolerate a little fiber in liquid form your uncle Lou needs to be on a zero fiber diet, anything hard to digest or non digestible needs to be off the menu. It is hard for us to get out of the habit of eating healthy, with MALs you really have to change your mindset, the primary goal is ease of digestion and not to aid digestion.

Remember anything white is alright.

If your uncle Lou is not on a high mineral and vitamin complex he will need to start taking them. They make a great deal of difference on how he will feel. I stopped taking mine for a week and I felt so lousy, brain fog increased and I was so lethargic I could barely move around.

Any questions feel free to ask.

Mark