Median Arcuate Ligament Syndrome (MALS)

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.

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

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!

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!

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

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

Hi All

Wishing you all a very happy Festive Season.

Mark

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

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!

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