My daughter is 19 and has had a stroke with mini-strokes Dec.2,2009.  I have been reading alot of information but it is getting overwhelming.  Anyone in Pgh., Pa.  I am very scared as most of you know how this feels.  I am trying to get a second opinion from Stanford.  just called them today to see what I need to do next.  Her Doctor here says we can wait and see how she does but all my research says differently.  I hope to get answers soon.

thanks,
Denise :(

Hi Denise

I'm really sorry to hear about your daughter but you are doing the best for her.

Getting an opinion from an expert like the team at Stanford is vital. There are just too many medical professionals who just don't understand moyamoya and too often suggest waiting when, in fact, surgery is required. Having said that, there are a few cases where it has been suggested surgery isn't necessary or not an option.

Get all her scans on disc and send them to Stanford ASAP. Let Dr Steinberg give you an opinion and from there make your decisions. Time is definately of the essence at this stage considering the sudden strokes and 'mini-strokes' (possibly TIA's?).

Good luck and keep us posted
Mark (Luca's Dad)

Denise,
Welcome to the family. I am sorry to hear about your Daughter.


I was 22 when I had my stroke. I had a doctor say it looks like MM but it could not be MM because I am not asian. Well I got a second opinion and found out I had to have my surgery or I might have another stroke. I had my second opinion at the MN Mayo clinic and they did my surgery there. They also recomended a follow up neurologest closer to the twin cities so I didn't have to drive so far for the follow-ups.

MM is not a wait and see thing. It is get the second opinion from a MM specialest is key! They might request a special test that tests for how much blood flowing. Then they can determin if or when a surgery to help the blood flow and prevent any future strokes.

You are in good hands sending her info to standford. Stay strong for your daughter; she will feed off of your strenght to help her thru this change.
Please keep us posted!
Becky

Hi Denise and welcome to the mm family. Am sorry to hear about your daughter. As the others have said, this is not a wait and see thing. And they are also right that surgery is the only option. Dr.Steinberg is the best but as Becky says she had her surgery in MN Mayo clinic. I had my surgery at the University of Iowa Hospitals. If you can go to Dr. Steinberg that is great but there are some other doctors out there that deal with mm.
You and your daughter are in my prayers,
Sharon

Denise,
Sorry to hear about your daughter.  I am from the Pittsburgh area and my daughter was just diagnosed OCT 2009 at childrens hospital in Pittsburgh.  She will be 8 on Feb. 20th.  I am still trying to deal with this but we have got a second opinion.  My husband researched and found that there are 2 doctors that we would go to:  Dr. steinberg (if our daughter was over 18 or Dr. Scott).  Amanda is scheduled to have Surgery in Boston at childrens hospital in March.  She is having bilateral pial (inderect surgery).  I am so scared but as I have read, this is a progressive condition and Surgery is the best choice.  Dr. Scott is wonderful, he also worked with Dr. stienberg and whenever we email him,  he responds withing minutes.  From what we understand, Dr. stienberg works mainly with the young adults/adults and Dr. Scott works with children.  There is a DR. Greene here in Pittsburgh who does have some knowlegde of MM, but what made us make our decision is that, it doesn't matter where we have to go,  she needs someone who knows exactly what to do and has worked with MM.  Amanda's story is on the site.  I'm not good with computers, but if you needed to talk further or I could help you with questions, let me know.
Tammy

tammy66 wrote on Jan 28^th, 2010 at 3:47pm:

From what we understand, Dr. stienberg works mainly with the young adults/adults and Dr. Scott works with children.

Dr. Steinberg is both an adult and a pediatric MM specialist. With Stanford being one of the largest MM referrals centers in the world. Dr. Steinberg has done over 700 successful MM surgeries for both adults and children.

Dr. Scott is a pediatric MM specialist and will work with adults up to a certain age group.

wrote on Jan 28^th, 2010 at 4:25pm:

tammy66 wrote on Jan 28th, 2010 at 3:47pm: From what we understand, Dr. stienberg works mainly with the young adults/adults and Dr. Scott works with children.  Dr. Steinberg is both an adult and a pediatric MM specialist. With Stanford being one of the largest MM referrals centers in the world. Dr. Steinberg has done over 700 successful MM surgeries for both adults and children. Dr. Scott is a pediatric MM specialist and will work with adults up to a certain age group.

Concur. Dr Scott consulted with me over the phone in 1999, but referred me to other surgeons.

HI, Denise - glad you found the site.
You've gotten good advice from the others.  My son was 3 and Dr. Dauser at Tx Childrens in Houston did his surgeries. But I think you have good ones closer to you.
I don't know how debilitating your daughter's stroke was or how she is recovering, but try to keep in mind that stroke recovery is more difficult the older you are.  As some of our MM.com members have found, waiting usually meant another stroke before anything was done to try to remedy the MM.  And there is no cure for MM - only surgical means to bring in another route of blood flow to the brain.
That said, if you do decide surgery is needed, be sure your surgeon helps you get the best anesthesiologist - that person is very important during surgery on a MM patient.
wishing you all many blessings and guidance.
Sue

My son, Mark, is 6 years old.  He was diagnosed Jan 14, 2010 by Dr. Smith at Children's Hospital in Boston, MA.  Dr. Smith is one of the top specialists in the US for treating MM.  My son had his cerebral angiogram yesterday and may have his surgery Fri 2/5 - waiting to confirm today.  Dr. Edward R. Smith, Neurosurgeon, Children's Hospital.  Phone 617-355-8414 - his assistant is a male - Joelle - very nice / helpful.  Email address - edward.smith@childrens.harvard.edu

Hi Susan

Sorry to hear about Mark but it seems you are in good hands and well advised

Good luck and keep us posted
Mark (Luca's Dad)

P.S. With a name like Mark, your son is surely destined for great things 8-)