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

Sue-

After reading your post i decided to hunt around for information on the book you were talking about. I was able to find it on amazon.com. They had a couple of used books (Moyamoya Disease by Suzuki) that were availble to buy and they had another book called The Official Parents Sourcebook on Moyamoya Disease. I do not know if book is good or not, but for anyone intersested in the books they are availbe at amazon.com.

Christy

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

dsrm5482,
               I have a daughter that is just not coming back all the way and I wonder the same things is there anything they can do for a specific part of the brain thats affected or find out for sure what part is really affected. They did tell us what part but if they can get more specific. Your right its physical therapy for over a yr. and a half the same stuff nothing to stimulate her brain or to help her brain to get any better. She has emotional incontinence amoung other things, that has gotten much better since the initial strokes but its still there. To me it doesn't that she will ever be as she was pre-strokes and MM diagnosis, especially since its been 19 months ago, I read some of these posts and wish she only had this and that temporary, I guess they should be happy it was only temporary. I thought what you wrote was very interesting because most people only have short term affects other than minor things. How old is Kyle again?
                                 Nancy ;)

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

another book called The Official Parents Sourcebook on Moyamoya Disease. I do not know if book is good or not, but for anyone intersested in the books they are availbe at amazon.com.

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

We have it in hard copy DJ.  Lots of generic advice/information, with MM-specific references (websites etc) seemingly just cut and pasted into it.  In our opinion it wasn't very helpful.

Andy & Nancy

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

As a side note . . . I have an EXCELLENT book on Phineas Gage.  Unfortunately, it is buried in a box somewhere with the rest of my classroom library at school for the summer classroom move, but in late August, when I unpack again, I'll try to remember it and post the info about it here.

The reason it's so good is that it gives the reader a lot of information about the brain.  It's aimed at kids . . . but it's not really so much a children's book as just easy to read.  Full of scientific info.

Diane

P.S. Actually, just did a search on amazon.com, and found the book:
Phineas Gage: A Gruesome but True Story About Brain Science
by John Fleischman

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  [smiley=twocents.gif]

I received my copy of "The Official Parent's Sourcebook on Moyamoya Disease" tonight from the Icon Group Online (http://www.icongrouponline.com) and glanced through it real quick.

I haven't looked into it in any detail yet, but my previous post about this company's books not being worth your money holds true.

My advice would be not to waste  [smiley=twocents.gif] on this book!  It's nothing more than a book of links on the internet you can get by typing "Moyamoya" into Google.

It's exactly the same type of book I was so disappointed in my previous post.  With books on hundreds of diseases (in the same format), the Icon Group is in it for the money.  They couldn't give a shit less about Moyamoya, or any of the other diseases they put books out on.  Of course, this is my own opinion but I would say...

Don't waste your money!

Unfortunate, they could do so much better.

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.

Thanks for the comments about the Official Parent's Sourcebook. I was thinking of ordering it but now that I've read your comments, I've changed my mind.
I'm a nurse myself and I didn't know about MM until our son was diagnosed with it. When I talked to nurses and doctors that I work with about MM shortly after our son's dx, I found that very few of them have even heard about the disease. I'm very interested in getting more info about MM. Hopefully, in the future, I can get more involved in research about this disease, maybe study the genetic aspect of it.
Gigi