I just wanted to know if there was anyone out there in the same situation as our family.  My son, now 11 months old has recently been diagnosed with MoyaMoya Syndrome.  He has had two strokes, the first when he was 71/2 months and the other when he was 10 months.  He had strokes on both sides of the brain the first was in Feb. and it was on the left side of the brain and the second was April and it was the right side of the brain.  The second stroke was much worse.  They were not sure if he was going to make it out of the hospital.  Thank God he did.  He has trouble using his left arm, leg, and hand.  Mostly his arm and hand.  Every day it seems a little better.  He is about to start physical and occupational therapy this week.  The neurosurgeon is not 100% sure that he has MoyaMoya syndrome but all of the pediatric neurologist are.  The neurosurgeon had him go through a spec scan almost two weeks ago and we are awaiting the results of that to see if he is convinced and to see if surgery is needed now or if he wants to wait a while.  The neurologist called with the preliminary results and said that his brain didn't seem to need anymore oxygen when it was stressed, it seemed to require the same amount of blood flow when stressed as without it being stressed with this scan.  There was decreased bloodflow where the two strokes were located.  We do not really know at this time what part of the right side of the brain was affected because the stroke took up most of the right side.  Luckily he is so young that the brain should be able to rewire and maybe he will be okay.  I don't know, I don't understand everything.  I just wanted to know if there was anyone else out there with a story like ours.

Michell

First off, where are you located at?  and i ask this because there are a few doctors that are highly known for treating moyamoya.

I have a 9 yr old daughter who i just brought home from the hospital today from her second surgery, her first was last tues. (18th) and the second wed (26th).  She had no prior strokes or bleeding. 

She did very well through both surgeries and came home after 4 days.

other then a few headaches in the evening she seems to be doing ok.  We had Dr. Steinberg at Stanford Hospital.  He has done over 200 of moyamoya surgeries..and i love him.  He is AWESOME!!!

there is contact information on this website for his office, might be a good idea to get a second opinion from him or another doctor.  I know Dr. Scott in the Boston area is also well known for MoyaMoya.

Let me know if i can help more...but honestly i would have a second opinion with another surgeon just to double check.

Hillary and family

ask the doctors about something called an AVM...short for another really long word, but strokes can also happen with that as well....but again i would contact a moyamoya specialist

Hillary

Michell---so sorry to hear about the tough time you and your son have been having.....he is so very young and all of this is so new and scary........I agree that Dr. Scott is supposed to be great.......There is a pediatric neurosurgeon at Columbia Presbyterian named Neil A Feldstein.......he has done more than 80 moyamoya neurosurgeries.....Since you are in Alabama. the closest place that I know of is New York City that has a pediatric neuorosurgeon with such extensive experience.....you will need to travel about 4 1/2 to 5 hours farther by car to get to Boston......Dr. Feldstein's e-mail address is naf6@columbia.edu.......there is a Columbia Presbyterian link on this website and you can find him on it.........his phone number and fax are on the Columbia link.....we are keeping your little one in our thoughts and prayers.....please keep us posted and let us know how you make out....God Bless you, your family and your beautiful baby.... We are all here to provide support...... .PatM

If you check on the Columbia website, you will see that Dr. Neil Feldstein does specialize in moyamoya surgery.....it's on the Columbia website link......what I guess I should have said is that he has done 80 or so moyamoya surgeries.........just a clarification....PatM

Thank you all for your responses.  I emailed both Dr's Scott and Steinberg last night and told them about Trey.  I also emailed his Neurologist in at Children's Hospital in Birmingham asking her what she thinks about him seeing a specialist.  I just want to do what is best for Trey. 

I hate to ask this, but is there a life expectancy for this disease?  I don't know much about it, just the basic--I think.  I have been led to believe that with the surgery everything will be okay, pretty much.  I haven't read alot about MoyaMoya because the Neurosurgeon here was not absolutely sure about the diagnosis although his Neurologist are.

Thank you for all of your help.  It is so nice to know that there is somewhere I can go for help and answers and support. 

Michell

Does anyone know anything about Dr. Paul A. Grabb at Children's Hospital in Birmingham, AL?  I emailed Trey's Neurologist about maybe talking to a specialist about the MoyaMoya and she said that Dr. Grabb does the MoyaMoya surgeries, I already knewn that, but I didn't know what her opinion was about seeking a specialist.  I emailed Dr. Scott and Dr. Steinberg, I am awaiting a reply from them.  Would we be able to just send one of them films and not have to go to either of their offices or would we be visiting them as well?

Michell,
Dr Scott had us send all of Arianna's films and reports.  Once he told us that if he reviewed them and we decided to go ahead with treatment, there would be no up front charge because insurance would pick it up.  If we decided to not go ahead with surgery he would have to charge.  It is worth it either way.  Good luck.

Michell

Our daughter was 18 months old when she had two strokes - one on each side - in March last year.  It took a while for her to be diagnosed with Moyamoya and it wasn't until July that she had her operations.

She lost lots of movement when she had the strokes and, like Trey, the Doctors were very worried that she might not pull through, but over the following weeks and months she gradually regained almost all her movements.  She's now doing really well, and it's difficult to tell the difference in movement/development between her and her (twin) sister.

My point is: it seems true, certainly in our experience, that babies have an ability to recover extremely well from a stroke.  I hope that's some reassurance to you.

Andy

Thank you all for all of the advice.  We have contacted Dr. Steinberg and he told us to send Trey's film to him and he will tell us what he thinks.  We are working on that now.  Dr. Grabb at Children's in Birmingham (the Neurosurgeon we have consulted with here) has had his office call us and set an appointment up to consult with him to do the surgery now that he has seen the Spec Scan.  We do not have any of the details from the findings of the Spec Scan other than the brain requires the same ammount of blood stressed as nonstressed.

Andy, I woul love to hear more about your daughter.  It is very encouraging to hear everyones stories.  Thank you all!

Michell and Trey

That is wonderful news Andy!  Glad to hear some nice news in my otherwise bad news day!

BTW, was your other daughter Natalie ever tested for MM?  Do the docs think there would ever be a chance of her too having MM?  Not that anyone can predict the future but the twin thing is an interesting twist.

Lisa

Hello Everyone:

I have posted posts like this many times, but hear I go again:

I had my surgeries 14 years ago, and am 23 years old now. If you have questions aout the long term, I would say EVERYTHING WILL BE FINE!!

I did not have a MM specialist do my surgery. My neurosurgeon had never done one before, and Dr. Scott had done about 6 at that time. My doc consulted with Dr. Scott and did a wonderful job.

I actually find it intresting that everyone seems to almost argue about doctors. I guess given my experience, I was just lucky. I think that any well educated neurosurgeon should be able to perform the surgery. It seems like the nerologist is the major concern. That is the one you end up actually dealing with, right? Or do you all still consult with the surgeon after? Just Curious.

And if anyone wants to know about long term stuff, PM me!!!

Mitchell... everything will be okay, just take care of your precious baby boy, and get him the surgery he needs.

Take Care, God Bless

Sara

We live in Opelika, AL.  We go to the Children's Hospital in Birmingham right now for everything.  I will look into these doctors you have recommended.  Thank you.

Trey has had MRI's and an Angiogram.  They are basing the MoyaMoya diagnosis from the Angiogram.  As I stated, the neurosurgeon was not 100% satisfied with MoyaMoya from the Angiogram but all of the neurologist are.  So, now we are waiting for the neurosurgeon to tell us what he thinks based on the spec scan.