i am 36 yrs old male and i was diagnosed with moya moya. the local hospital didn't know what it was and told me that i just need to live my life as i always have and the referred me to a doctor  at uva and he did further tests and seemed to think it was hardening of  the arteries, sent all my information to dr. steinberg and he confirmed that it was moya moya and that he need to do more test. it has taken several months for me to get the referal and approval to go get the surgey finally  the day is here when it is scheduled for me to go. july 22 and july 29th. i have been on this site  so many times and the information was great and it lead me to believe there is hope for us with moya moya. my faith in god has made me strong and to believe i have a healing and it can be from god or god leads us to the pyhscian's hands and i beleve he has led me to dr. steinberg. keep me in  your prayers and i will do the same. may god bless us all.
butch

Hi Butch!

After multiple conversations with your mom, it's great to finally "meet" you!  I hope things are coming together for your trip out west - it must feel like it's been a long time coming!  Who will be accompanying you?  I'm looking forward to meeting you and whoever is along for the ride.  See you in a couple of weeks!

[smiley=hug.gif] Jill

jill i m so gald to hear from you. thank you so much for your help with everything. my wife is coming with me  and my mom and dad will be coming for the surgeries.
we a looking forward to coming and anticapating the tests and the surgerys . we are praying alot and may god keep his hands over us as we come there to keep us safe.
butch

God will definitely keep his hands on you, Butch!  I'm glad you have your faith - it will be what gets you through all of this.  From almost firsthand experience, I know it's frightening, but you have every reason to be confident with your decision.

There are a bunch of great people on this site who will be pulling for you, too.  It's nice to not feel so alone, isn't it?  Take care . . . you're in my prayers!

[smiley=heart.gif] Jill

Hi Butch! [smiley=wave.gif]Welcome to our MM family!

I just wanted to tell you that you certainly do have our thoughts and prayers. We’ll be right there with you in spirit. You'll be in excellent hands. (spiritually and physically) Dr. Steinberg and staff are the best in the world and you’ll find Jill to be a Godsend. I’m confident with all that on your side things will go well. Stay strong and keep the faith! [smiley=hug.gif]

Please keep us posted.

Mar

Hi Butch, I'm the one who have conversation with you and your wife awhile back, I'm glad that all paper done well and you going to surgery, let you know you're in my thoughts and prayers.  
Kieu

Hi Butch!

Welcome to the MM family!  I just noticed that you live in Woodford, VA.  Wow!  You aren't too far away.  My brother and I live in Fredericksburg.  We are only about a half an hour away from each other if that.  Both my brother and myself have MM and we both had our surgeries at Stanford with Dr. Steinberg.  

Shane and I would love to meet you and your wife/family before going out for surgeries if you would feel comfortable with that.  Please let us know and we will make arrangements.  

I'm glad that you got a second opinion from Dr. Steinberg.  Which local hospital were you going to?  Which doctor at UVA did you see?  Just curious.

Look forward to talking with you further.

Michelle

hi everyone
i wanted say
thank you everyone for your support and prayers. i will keep everone updated on my progress.

michelle i like to say hi and we would really like to talk to youand your brother. that would be great call me anytime my number is 540-295-0946 and we can get together and talk.

butch

Hi Butch and Welcome to the MM Family,

My brother's case mirrors yours to some degree. He went misdiagnosed for 4 years, had two strokes, a dissected right upper internal carotid artery and a hemorrage. The doctors in Ohio did not know what was wrong with my brother and when they saw the collateral vessels (puff of smoke) they said they had never seen anything like it and sent him home to live out whatever life he had left.  

We finally found this site (thank you DJ) and as a result, found Dr. Steinberg at Stanford.  Keep in mind, by the time my brother got to Stanford he was in really bad shape in that he was completely off balance, he had tremendous difficulty speaking and comprehending, his ear was completely purple from the lack of blood flow and his skin had turned a gray color.  THE GOOD NEWS IS  Dr. Steinberg performed two STA-MCA's (direct bypasses) on my brother in May of 2005 and today, my brother is alive and well and can speak with no difficulty.  It is truly remarkable and amazing.  

Clearly, had it not been for this site and Dr. Steinberg, it goes without saying my brother would not be alive today.  It is only by the grace of God, the hands of a skilled, knowledgeable and experienced Moyamoya neurosurgeon (Dr. Steinberg) that my brother is alive and well today.  One would be hard pressed to know that my brother has been through all that he has.  He is living proof that given the right circumstances and care, one can have their quality of life restored and live a life of normalcy even with Moyamoya.

You are in excellent hands with Dr. Steinberg and the entire MM team.  They have the entire process from testing to surgery to recovery down to a science and it flows like clockwork.

As for Jill, she is an angle sent from God. She sat with me through my brother's surgeries and helped guide me through the entire process and removed the stress and answered my questions. Plus she let me call her and ramble on and she calmly listened.  It was just me and my brother at Stanford during his surgeries and we are from Ohio so you can imagine how much of a blessing and comfort Jill was to us both.

You have great family support and a strong faith and I am confident you will do well.

Please keep us posted and continue to ask any questions or just come to the board to chat.  We are a family and here to support you and your family through this journey.

You and your family are in my thoughts and prayers and I will be thinking of you on the 22nd and the 29th.

Hugs,

Lore

Hi Butch

Just wanted to say hi and to let you know that we are from New York and we are in Stanford right now.  My husband has just completed his second surgery with Dr. Steinberg.  His first surgery was last week.  He is recovering well and has had excellent care.  You will be in excellent hands as soon as you get here.  Everyone at the clinic has been wonderful and extremely helpful.  Dr. Steinberg is great and will answer all of your questions, not to mention take great care of you.

Good luck and keep us posted.
Lisa (wife of a moyamoya survivor)!!

hi everyone thankyou so much for replies it make s me feel alot better about my surgery that i can go to this site a relate to people of the same concerns/ alot of your storeies have helped me feel better.  lisa i pray everything is going well and that your husband recovers  quickly and  my prayers are with you all.

also i have my mom and dad coming for the surgeries is there any place that you can recommend for them  to stay at,  at a desecnt price, or any other suggestions for them. thank you so much
butch
have all of you in my prayers.
thanks so mcuh

Hi Butch,
When I returned for my six-month check-up in May, my Mom and I stayed at the Stanford Guest House. It was only a few minutes from the hospital, comfortable, clean, safe and quiet. The price is reasonable and for an extra $5 a day you can have a microwave and refrigerator in your room. Here's the link to their website:
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

You'll be receiveing the best possible care from the team at Stanford. I'll be sending my prayers for you.
Kim

Butch,

Our daughter, Jennifer,  had surgery in August 2006, she was 2 yrs. old at the time.  We will be in Stanford from the 22nd-29th of July for her yearly check up. We'd love to meet you and your family.  When we talk to Jill (whom we just love:)) we'll try to arrange something.

God Bless and our prayers are with you.

Fred and Michelle Kasunick

fred and jill that would be great to meet up with you when we get there it would be nice.
call as at 540-295-0948 chinay and butch

Hi But

Hi Butch,
               I go on here every now and then. It took the doctors 2 years to diaganose me. I had surgery in May of 2006. I am doing ok. I still get headaches and paralysis. The doctors do not feel at this time that they are TIA's. They may be seizures. I see the doctor on 07/21. I am 37. They did find that I have a low blood flow on the side I had my surgery and minor stroke. I still lead a normal life and work full time. The dr.'s are amazed. Good for me! Live for today. Life is too short. Anyways, I do not need surgery at this time it is a variant of MM they tell me. Who the heck knows. I hope I did not scare you. We are a rare breed here and support one another. No one understands like we do.  ::) Feel free to drop me a line. I know you will be fine and surgery is a piece of cake. I went in on a Monday and was discharged on Wednesday mid morning. ;;D Please keep in touch. Keep smiling ;;D

LaraB

Welcome to the MoyaMoya family. Dr. Steinberg did my surgery on February 26, 2008. I have to agree that the Lord leads us to the right hands. Without Dr. Steinberg I would have been stuck in Missouri waiting for a stroke. I don't know when you are leaving California, but I am flying in on August 3rd for my 6 month testing. I don't see Dr. Steinberg until the 25th of August but if you are still in California I would like to meet you and your wife. My number is 816-419-4806 and I will have it with me in CA.

Reagan