Median Arcuate Ligament Syndrome (MALS)

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!

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

Hi All

Wishing you all a very happy Festive Season.

Mark

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

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

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 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!

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

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.

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.