Hi I was reading under the topic of "insurance"...Wayne  said that he heard from a doctor that one needs to put yourself on a high protein diet to develop those arteries.   I haven't seen that stuff anywhere but if that is true I think that is something my surgeon should tell me so I can prepare that into Cara's diet that so that the arteries that need to grow from that "muscle graft" will benefit from it.  This is really over most of our heads but any piece of information is worth knowing....especially where there is a discussion about someone writing a book on MoyaMoya...maybe from a patient experience point of view...there are so many variations and experiences that I know would help those new to MM.  When Cara has her second surgery I am going to ask her surgeon that question.  More likely will get a response of..."Nah...just eat your fruits and vegetables...and you'll be fine"... ;)

Have a GREAT day all of you.

Cara'sMOM

In regards to high protein diets I am not sure if my doctor is corect.  It was not from a surgeon, but from a neurologist.  He said moya moya carriers have a high a high level of protein in the spinal fluid, which is key in artery development.  The spinal cord is the main link to the brain.  At that point I remembered from another doctor that told me that arteries are the only blood vessels that have muscle (also the only blood vessels that harden).  If arteries are muscles then what fuels muscles?  Protein is what fuels muscles and as for arteries in the brain, a high level of protein promotes growth.  How do we get protein to the spinal cord is key.  I can only think of eating protein ( low fat).  Now you must take a step deeper. How do children get protein?  Do they develop it on their own or is  diet the only way. You have to ask a few pediatricians on that issues also.  Do some home work, God knows I am. I am not sure of anything but helping a love one.  Any information is important and you know as well as I know that you must do your own research. Doctors today work off of what the insurance company will allow. Some doctors take it to heart, but the insurance company have the last call. If you find anything, please let me know and I will let you know on this end.

Good luck

Wayne : :D

Thank you Wayne !!!! :D

You bet I will find that one out.  I do have connection with the surgeon somehow and will have the opportunity to ask him again when we are back in Rochester, Minnesota for Cara's second surgery on August 23rd.   The Mayo Clinic's newest chief of neurosurgery, Fredric Meyer, who did Cara's first surgery was trained by the husband (Thor Sundt) of a close friend of ours.  Thor Sundt passed away due to brain cancer 12 years ago.  Dr. Meyer revised the book that Dr. Sundt wrote "Sundt's Occlusive Cerebrovascular Disease" and in the book there is a chapter on MoyaMoya that Dr. Meyer co-authored.   But that is what I was hearing that people who have MM have a "special fluid" in their "brain"...those words I read somewhere....but what you said made sense "higher content of protein" in spinal fluid.  But made me also think since the pediatric neurologist here in Phx and the pediatric neurosurgeon both were "unsure" if my Cara actually had MM.   I would think if they noticed a higher protein content in her spinal fluid then that would confirm it.   They kept saying ....it was a broad spectrum of disorders that she could have....and that her "spells" weren't really "TIA's" yet....they should have done the MRI sooner.....as her first couple MRI...showed nothing.  but her latest MRI at the Mayo in Rochester in June showed a lot of spots..."TIA's"  and that the "left side arteries" had grown over to help the right side somewhat because her right side was 100% closed...plus the angiogram now showed MM arteries growing in the left side.  That confirmed she had MM...and to have the surgery.   The surgery wouldn't work for someone that didn't have MM as they wouldn't have that special fluid.  I guess that what it is....I've been looking all over for that information.  Will keep at it and let you know.    This information is probably not normally shared with patients but I would think it should as it has to be present in the MM patient.  My question previously was "how do they know that fluid is present...if they do at all?"  Like you said "higher protein content level" may be one way.   Plus there are diets that make arteries narrow, too.  That is something we should avoid for MM patients, too.  I don't see the doctors recommending a certain diet...maybe the benefits are too small...but any benefit is still good...especially long term ones.

Have a great day,    Cara'sMOM  :) :) :)

CarasMOM wrote on Aug 10^th, 2004 at 12:49pm:

I don't see the doctors recommending a certain diet...

CarasMOM - I have read several posts that Doctors have recommened little to no caffeine intake.  Caffeine does affect the arteries in the brain.  Doctors also recommend keeping hydrated....in fact, I think most, if not all, doctors say that.  My doctor (Dr. Scott) never put a restriction on my diet - but you can bet I'm going to follow up with him on that one!

-Shari