Hello Everyone;  I have been "creeping" the site since my daughter's diagnosis of MoyaMoya on December 29th - she was rushed to the hospital on December 26th with stroke like symptoms - she also had pneumonia and was very sick. 

I have reached out to a couple of members but really have just been trying to absorb everything I can about this disease.  My Daughter Kerri-Lynn is 20 years old and has Down syndrome, she also had surgery at 3 to repair a serious Heart Defect - which we are happy to say has been very successful.  Our appointment with the Neurosurgeon is Feb 20th in Toronto.  I know that we will get most of our questions answered soon, but I have a few questions I was hoping someone could answer for me.

1.  Are 5 blockages a lot?  Is there a chance she won't be a candidate for surgery?
2.   Now that she is on blood thinners - what is the chance of her having another stroke prior to surgery - and is there anything we can do to prevent it from happening?
3.  Does everyone have 2 surgeries?  If so, how far are they usually apart?
4.  How long do most people wait between diagnosis and surgery?
5.  Has anyone heard of Dr. Tymianski - if so what did you think of him?

Thanks in advance for any help you can provide. 

Deb

Thanks DJ - that is very helpful.  I didn't mean to say she is on a blood thinner - she is on a baby aspirin every day.  The waiting is very hard - but having this site will certainly allow me the opportunity to ask the right questions.  Thanks for everything you do to keep this site going.

Deb

Hi there.  We are currently at Stanford and my husband had surgery here with Dr. Steinberg last week.  While here and staying in the apartments they put us up in, we met 4 other families that flew in here from all over to have their surgery as well.  One of them also happened to be a patient with Down Syndrome as well.  This was his first surgery and he was here with his parents.  I believe he is a bit younger than your daughter.  I think it is great if you can find someone in your area who specializes in this disease and has done many surgeries specifically with moyamoya patients. I know my husband had surgery in our hometown in August, and although the surgeon seemed to know a lot about moyamoya, he had not done as many of these surgeries as Dr Steinberg.  I just know when you google or research the disease, one name comes up over and over again as a leader in the research and that is the doctor here at Stanford.  I wish now we had just come here originally instead of wasting time and a surgery in our hometown. Matt's experience here has been Outstanding...and completely different than what we experienced back in August with our surgery where we live. This is just my opinion...  just reaching out to help.

Good luck and keep us posted.

shari

Hi Deb,

My son is 12 yrs old and has down syndrome and autism. He was diagnosed April 9th of last yr with Moyamoya after suffering a stroke that we were able to see. Tests showed he had already suffered 5 "silent" strokes before this one.

We live in Pennsylvania, but went to Boston Children's Hospital for him to have the surgery. He had surgery on both sides of his head at the same time on May 31st. The lack of blood flow on the left side was worse than the right side at the time. The surgery lasted almost 6 1/2 hrs, which was shorter than they originally expected. He is now on 1 81mg aspirin each day.


My son, Christopher is non verbal, so we do not know if he ever had any problems before hand such as headaches, numbness, etc. If he did, and we knew, maybe we could have prevented all or some of the strokes he had.

Best of luck to your daughter and family. Personally, I would prefer the surgery to be done as soon as possible. It is a scary waiting period.