Hi All,
I am new to this site but am finding it fantastic. I should tell you I am in Ireland so the information over here is extremely small and vague. Hope you don't mind an international friend! My son is 3 in September and has MOPD II a rare form of primordial dwarfism. He suffered a major stroke in January this year which left him like a newborn baby. He has thankfully made a fantastic recovery, he has learned to walk again, eat, but most importantly his smile and personality has returned. He hasn't regained his speech as his throat was damaged, had an operation on his vocal cords as they were paralysed but we are optimistic. He lost the use of his left hand but is managing well with the right. Children are so resiliant.
Anyway sorry for the long post, but to cut a long story short, he was diagnosed with MoyaMoya and it is quite bad. His neurosurgeon has never done the surgery before but has worked in Great Ormond St in England where they have done the surgery and he is in talks with the surgeon there to which surgery should be done but we are still waiting for answers.
We are so worried as he is so young and has been through such a hard time in the last few months.
Would love to speak to others who have been through similar. How long did you wait for the surgery ? He is on aspirin which hopefully is doing its job in the meantime.
Thanks again for reading

Chers,
Welcome to the family. I am happy you found us. Choosing the correct type of surgery is very inportant. I would consult with a MoyaMoya expert but I am not sure if one from over the pond is listed in the surgens with bypass experence section. You might want to see if Dr.Stineberg has any recomndations.

As far as time I waited before the surgery was 2 months becasue they wanted me off of plavix. but each case is different, and shince he is so young I am not sure what the time children need.

Good luck,
Please feel free to ask more questions because knolage is power when it comes to MM.
Becky

Hello, I started having serious symptoms 8 months before I was diagnosed. They were trying to diagnose me with vertigo, M.S., etc. In the end I was diagnosed with MMD. After I was diagnosed it took 2 months before my doctor performed the surgery. I was upset that the reason it took so long was he was going on vacation, but my mom and I really did not know much about the different surgeons and such. I was 16 yrs old turning 17 yrs old when I had my surgery. They performed the EDAS procedure. I had 2 strokes and now I only have a few issues with memory and processing information. But I am going to go to a university and lead a MMD-normal life. If you would like to talk more or you would like to talk to my mom to connect with another parent who knows what you are going through just write me on here and I will reply. Hope everything goes well, my prayers are with you.
- Jenny

Hey Chers,

I'm sorry you had to find us but I'm certainly glad we could be here for you!

You might find a video from Dr. Steinberg at our Philadelphia Gathering  a few weeks ago very interesting.  He has a video of one of his MOPD II patients participating in a gymnastics event 10 months after having indirect bypasses on both sides.

You can view the video on this page (http://www.moyamoya.com/philly2011.html) and then watch the end of the Dr. Steinberg (3 of 3) video.

Hang in there!!

DJ

All
Hope everyone had a great Christmas.
Am thrilled to say we are flying to Stanford for Mikeys surgeries on4th Jan. Thought we would never get here but thankfully its now upon us.
Anyone already been to Stanford with any advice or recommendations gladly received
Thanks

Chers you are certainly going to the right place for your sons surgery.  Please keep us all posted on how things are going.

Donna

Hi there, I'm new to this site too and found it very helpfull so far. Still have no idea wether they are gonna operate m, so I sent the professor over here in Belgium a mail wether he could hurry up a little and even asked him to contact Dr. Steinberg for help. I just saw the video that was mentioned a few posts erlier and it made me cry...because it gave me hope ;-) IF THe prof here doesn't contact this week, I swear I'll try to contact Dr. Steinberg myself, someway, somehow. This man like's to laugh so I already like him.  :D But I'm afraid going to Stanford is gonna cost me a fortune I don't have.... :'( Keep the spirrits up everyone