There is at least one book dedicated to Moyamoya.  It was written in 1981 by the Dr. in Japan that gave this disease the name "Moyamoya".  I think his name is Suzuki.  Here in Houston, the only copy I found is at the Medical library and only students/med personel can check it out.  I was able to read it at the library, but with two little ones with a babysitter, I didn't have but a couple of hours to look at it.  It mostly detailed the studies done in Japan on MM patients with pictures of angiographs at the 5 or 6 different stages of MM.  I also remember it having a graph of the age of diagnosis and it basically mocked your age survey, DJ!
But I really think the most important information we can get is what area of the brain has been damaged and what do you need to do to repair it or train another area to take over that function.  I kept asking  for info on MM (of course got very little) when in retrospect, I think my time/efforts would have been better to research the effects of the stroke on Kyle.  Seven years later, we are still discovering things that aren't right that are most likely due to the stroke.  While I feel we had good medical care, no one ever mentioned the possibility of language (reading) difficulties or personality changes.  The focus was on speech and physical therapy only!  (Anyone read about Phineus Gage?  Now that's a very interesting story on the brain!)

I noticed PatM is planning to have a functional MRI done.  There's a website called "amenclinic.com" that is dedicated to info on the brain with links to a site that has hundreds of fMRI images of Dr. Amen's patients.  The fMRI's are expensive,  but should help pinpoint the proper therapies needed.  Dr. Amen also has several books out on different brain disorders (depression, ADD/ADHD, Alzheimer, etc.) and what he thinks is the best remedy for each.

sorry this is so long, but I wanted to share the stuff I've found that has helped me understand what we're dealing with.  Hope it helps someone else, too!

God bless and be with you all!

Sue, Kyle's mom

Soon after I was diagnosed with MM, I got on the internet to see what material I could find to purchase on the disease.  I had a hard time finding books to purchase.  I found a used book on ebay, but the guy that I bought it from said he mailed it, but it never got to me for some reason.  So, after searching through books a million, waldenbooks, barnes and  noble, I finally found one ( and one only) through borders.com.  I hated to pay the price ($ll0.00), but I wanted to see what it had to say.  It is a hard back book by Dr. Kiyonobu Ikezaki, MD and Christopher M. Loftus, MD.  It is very interesting.  They have a lot of pictures showing an angiography of a patient with and without MM, picturs of patients vessels before and after the STA-MCA surgery and several others.  They list indications for direct revascularization bypass surgery.  They also show diagnosis through PET and SPECT scans, MRI's and CT's.  It list the difference of having Ischemic VS Homorrhagic forms of strokes.  Management strategies, postoperative evaluation, follow-up imaging, management of treatment failure, indications for reoperation, pregnant patients with MM, direct bypass surgery VS indirect bypress surgery etc.  I think it is a wonderful book.  It is a bit over my head.  But in the beginning, it states that was primarily written for neurologist to understand this disease and how to treat it.  But, my father in law is a physician and he has helped me understand a lot of it.  If any of you can get your hands on it, ( it is hard to get) I would highly recommend it.  If anyone needs any further information about the book, please let me know and I will try to get it for you.   Laura

babyblue wrote on Jul 6^th, 2004 at 5:30pm:


Just wanted to let everyone know I've purchased this book in .pdf format.  I haven't gotten it yet, but should have it later this week.  I'll let you know if it's any good.

I've seen one of this company's other books on another subject and I wasn't impressed so I'm not getting my hopes up!

DJ

I also have the book by Ikezaki & Loftus that Laura spoke about and agree that it is a fairly good book.  I too recommend it.  It is difficult reading but considering that there isn't a heck of a lot of information out there regarding MM, I would consider it to be THE book to have if you want to know about MoyaMoya.  Of course, Thank God for the Internet, without it I would have been totally lost!

Lisa

I agree with DJ, I also originally ordered the Parents Sourcebook on MoyaMoya disease, eventhough  I myself have the disease and not one of my children.  But, it was the only one that I could find at the time.  I found it a waste of money.  I returned the book and got a full refund because it didn't offer me any information that you can't get off the internet in one page.  Just thought I would offer my 

Anyone here interested in writing a good book on MM?  I think all of the input and knowledge here would provide good sources if all were willing.