my name is Christy. last june i had a stroke and learned that i have moyamoya. i have been put on blood thiners but i have had three ischaemic attacks since. my doctor is very good but i am his first moyamoya patient so we are both lost. i am so happy that i have found people who understand what i am feeling. when it comes to moyamoya im still unsure of many things but i now feel i am on the right track. i am so happy to find everyone of you!
babyblue

Hi Christy,

If your doctor does not have experience with mm, find a doctor that has treated the disease.  There are many mm'ers who have good doctors.  My sister (41 when diagnosed) has mm and had the surgeries.  

How old are you and where do you live?  Hopefully that is not too personal.    Read all that you can on this webiste.  

Welcome to the mm family - DJ has done a wonderful job on this website

Janice

Hi Christy,

I see from the Location Map you are from Kennesaw, GA.
I found the doctors I am going to on the internet under moyamoya.  Maybe you can find or your doctor can help you find someone in your area or state.  I know my insurance would not cover unless it was someone in my state.  I got lucky I did not have to go to far and so far I am happy with everything.  

Kathy

Hi Christy!

So glad to see you've found us!  All of the mm'ers and family members/supporters here know exactly what you and your mother are going through trying to find out about Moyamoya.

There is a lot of information here about the different types of surgical treatments available and our list of suggested doctors is starting to grow.

Bottom line is... being diagnosed with Moyamoya IS NOT the "end of the world".  It's definately a little scary, but with the proper treatment, you can live a full, healthy, normal life!

If you have any questions, or just need to vent, please don't hesitate to send any of us a message or put a post on the board.  We're all here to help each other get through!!!

Welcome to our family!

[smiley=hug.gif]

Hi Christy,  [smiley=wave.gif]

From what I understand so far, you're on the right track. You're here, and what a great way to start. I just want you to know that we're also here for you and I know just how powerful that can be. Our family was in the same situation as you.  First, we found DJ, an angel, who gave us excellent support and advice, and then Dr. Steinberg. A expert on mm, who gave my niece a chance at a long, long life that she would not have normally had if we listened to our doctors. Through these travels, we met so many wonderful people who helped us through it all. So you see, we've been blessed and you seem to be traveling down that same road, so I wanted you to know that our prayers are with you and that we'd be here for you.

I believe that God’s touches us through the hands of others, and that we hear God’s voice through the words of others, we feel God’s comfort through the support of others, and we know God’s provision through the gift of others.

Hang in there and please keep us posted.  [smiley=hug.gif]

God bless,
Mar

Mar-
thank you so much for support. i am trully blessed to find all of you. my reports have been sent to dr. steinberg and we should know early next week when my surgery will take place. though im a little scared i know that i have my friends, family, all of my mm family here, and god so things we will be ok. i have delt with mm for nine months not knowing what to expect but within the last week i have been givin the right path. i agree that dj is a true angel and i cant explain the happiness i have found in this group. i will let you all know when surgery is scheduled and i cant stop thanking everyone enough.

Christy

Hey Christy,
I'm so glad you're going to Stanford!!  [smiley=sayyes.gif] They are a wonderful staff there and I know that you'll be in the best hands. If you or your Mom would need anything or info, my family has been through it and may be able to help with even the littlest thing. Please feel free to contact us. They flew from the east coast to the west coast as well and it was well worth it to get the best doctor in the world for mm. We just love him!!
As far as being scared...bless your heart, that's natural, but as far as the surgery goes, if you read the past posts, you'll see that people have said that their routine dental work was far worse, believe it or not. I'm not making light of it, I just want to reasssure you.

Hang in there  

Mar

TO ALL THE MM FAMILY MEMBERS HERE,MY NAME IS DIANE AND  I AM BABYBLUES MOM. I HAVE TO SAY SINCE FINDING THIS SITE AND DJ, I SIT HERE EVERYDAY AND READ THE POST AND THEY ALL TOUCH MY HEART. AS CHRISTY HAS POSTED WE ARE TALKING WITH DR STEINBERG AND SHE WILL BE GOING TO CALIFORNIA FOR HER SURGERY COULD BE AS EARLY AS THE END OF APRIL OR 1ST OF MAY.  WE ARE VERY EXCITED AND AT THE SAME TIME SCARED.I HAVE BEEN IN MEDICAL FIELD FOR 20 YEARS AS A TRAUMA PARAMEDIC AND THE USELESSNESS I FELT NOT KNOWING WHAT TO DO FOR MY OWN CHILD, I KNOW YOU KNOW IS AND WAS HEARTBREAKING. CHRISTY IS THE OLDEST OF MY 4 CHILDREN BUT STILL MY BABY. I CANT THANK YOU ALL ENOUGH FOR THE LOVE AND CONCERN YOU HAVE ALREADY SHOWN US. WE WILL KEEP EVERYONE INFORMED OF WHAT IS GOING ON AND PLEASE ALL KNOW THAT OUR LOVE AND PRAYERS ARE WITH EACH AND EVERY ONE OF YOU ALSO. THANK YOU

LOVE AND PRAYERS
DIANE
(babyblue's mom)

Hi Diane,
Welcome to our family! [smiley=hiya.gif]So glad to meet you. You don't have to feel helpless anymore Diane...You've certainly did the best thing for your daughter. Many will attest to the fact that, unfortunately they did not have the opportunity to have one of the best mm specialist in the country as you now have. you should feel comforted in knowing you're doing the best for your precious babygirl.
Thank you for your prayers and kind words.

Mar