Hello, my name is Taly & my 22 month old son was diagnosed with MM (the Drs arent sure if its the disease or the syndrome yet). Ive read a lot of information lately but nothing that makes me feel any better about the diagnosis. I understand that all cases are unique, but i thought maybe someone here could help me understand this better.

After the angio the Drs discovered that ALL the vessels in his brain have been affected. All the "splits" from the coroted have been affected as well. What does all this mean?? How can he be a functioning alost 2 year old with almost no blood getting to his brain? (I saw the MRA & it was frightening how little blood flow there was.) Will this affect the surgery? What happens post op? How many strokes does he have to have before this is over?

I asked the neurologist, but all he said was ask the surgeon. We wont meet her till this thursday (2-5-09). If anyone out there has any information to help the facts make more sence please Email me.
Also if anyone knows any questions I should be asking please let me know that too.

Thanks soooo much

Taly
PS my email is Talybama@yahoo.com

Welcome to the Family! your questions...

How can he be a functioning alost 2 year old with almost no blood getting to his brain? Humans are amazing creatures! There was a story of a small child who developed with only one hemisphere of her brain, and she was fully functional. Childern expessaly are able to use other parts of their brains for things that should only be known in a certian spot of the brain. This is why children can learn a second language easyer then an adult.

Will this affect the surgery? This should not effect the surgery, but it may determin the type of surgery he needs.

What happens post op? He will have to leard new bounderys of what he can or can not do. These are determined by the indivigual person. My limitations are very diffrent form the next person. But for the most part there is not much of a life long restrictions.

How many strokes does he have to have before this is over? If you have a good nuologest who knows about MM and knows about the many types of surgery. And who can diagnose what surgery would be best. Dr. Stineberg of Stanford has a great!  He is the best in the USA. but there are others that might be closer to you that are on this sight under "Surgens with bypass experence". He might be one who never has a stroke!! But proper and early diagnosis is STRONGLY recomended.

I hope I have answered your questions. I will pray for you and your son. Please keep us all updated!!
Becky

Hi Taly

Welcome to the moyamoya family. I've sent you an email plus you'll find many entries on this website about Luca.

Thinking of you guys

Mark (Luca's Dad)

Hi Taly.  My 14 yr. old daughter had almost no blood flow to the right side of her brain and the left side carotid was also closing off.  She was totally normal.  It took a LOT of doctor visits and several years for me to get a doctor to do an MRI because she passed all of the in office neurological testing and seemed normal except for a learning problem.  She had both surgeries in June 2008 with Dr. Steinberg and is doing just fine.  We went for her six month check up but I still haven't received results from anything as of yet.  I think I'm going to email them tonight.  :)  I did see two MRI's to compare from before the surgery and after the surgery and it is very frightening and amazing how the brain can function like that!!!

You are on the right track now!!!  Let us know how things are going.  :)  -Audrey

Just thought Id let everyone know about Ethan. He was scheduled for surgery this past tuesday, but we had to cancel it because he had an ear infection. Then when we got back from OKC we had to take him to the ER in the town i live in. He had gotten croupe too. (poor guy). Hes at home now and feeling better, but we are back to not knowing when the surgery will be because hes too weak & the surgeon is booked till the first part of March. So who knows now. I am so frustrated with this entire situation. I wich my kiddo could be heathy & normal again.

Hang in there Taly.

Kids really know how to throw us curve balls, don't they? Beginning of March isn't too far off. Make that second appointment and before you know it you'll be back.

Hope Ethan feels better soon. Matt, my three year old son, also suffers from croupe. Quite frightening when they have a proper attack, isn't it?

Good luck
Mark

No kidding.  They Sound awful!!

I  got a phone call from the surgeon today & we are scheduled for this upcoming Friday (2-27-09). The surgery will be at OU Childrens Hospital in Oklahoma City, OK at about 8 am.

Please keep Ethan in your prayers!!

Thanks a lot
Taly

Great. Ethan and you are very definately in my thoughts.

Mark

Good luck today Little Ethan. Lots and lots of thoughts coming your way.

Mark

My thoughts and prayers will definitely be with you and Ethan, Taly.  It's a difficult day, especially for you, but you'll all get through it.  Please keep us posted with how things went when you are able.

[smiley=hug.gif] Jill

Tally,

My thoughts and prayers are with you for your sons surgery today.  Hope all goes well.  Keep us updated.  

My son had his surgery in November - he is now doing very well.

Good luck!

Linda (Brians mom)

Just wanted to update everything.

Ethan is doing great!! The surgeon said everything couldnt have went smoother (only took 2-3 hours!).  We got to leave the PICU today & he is awake & eating cheetos.  The incesion is a little bigger than they had told us, but thats not so bad. The Drs & nurses are all suprised that he hasnt swollen that badly (I think its pretty bad, but i dont see it all the time either) Hopefully we can go home Tuesday-ish.

Thanks so much for your words of encouragement. They have REALLY helped me get through all this. You are all a wonderful group of people!!! :)  :)  :)


Taly

Another Update....

Ethan is doing WONDERFUL!!! We got to come home on MONDAY!! Only 3 days in the hospital can you believe it?!?! I am so relieved that we are half done with the surgeries.    ;D   :)


Talk to everyone later

Taly

Great news. Been thinking about Ethan, thanks for the update.

Mark (Luca's Dad)

Ethan is scheduled to have surgery #2 on Tuesday 3/17. He has done better than I could have hoped. The surgeon said she was impressed that he didnt have any TIA's after the first surgery. I will let everyone know how #2 goes.

Thanks.
Taly

I am so glad for you all.

I keep you in my thoughts and heart.

Hope the next surgery, and recovery, goes well too --


Linda (LA)

I'm so happy for all of you that things went so well.  Good luck on #2!!!  :)  -Audrey

Sorry I havent put an update on here lately, its been a LONG week.

Ethan had Surgery #2 on 3-17. It went GREAT! We were in the hospital less time than we were with #1. He did have to have 1 unit of blood this time because he was anemic. We were discharged from the hospital around 5 or 6 pm Thursday 3-19. We decied to stay in Oklahoma City over night instead of getting home at 11 pm. We got to the house around 3pm Friday & were back in the ER in my home town at 11 PM. He had developed a fever of 102 and was throwing up. So we were medi-flighted back to OKC. We got to the Childrens Hospital around 3:30 am and we have been here ever since.  The Drs areant  sure whats going on, at first they thought Menigitis, after they ruled it out they thought possible pneumonia, but thats not it either. Luckly he hasnt had any major stokes or anything, but i think he has had a TIA or 2 since we've been here. But the surgeon said that if he did it was normal this soon after surgery and for him being dehydrated. They couldnt get an IV started for the first 2 days we were here and were talking about puting in a central line, but an anestesia Dr FINALLY got one. He has been improving daily, getting up and walking arond, and wanting to play more. Yesterday was his 2nd Birthday & he seemed to have a good time at his "party". When the surgeons came in this morning they said we could go home as soon as he is eating and drinking better. (I think he had maybe 20oz in 24 hours & thats not near enough.) Hopefully he will feel better today & want to eat & drink so we can go home!

I think thats everything....lol....like I said its been a LONG week!  

Thanks so much for everyones concern, thought & kind words. They have really helped & I REALLY appreciate it!

Taly (Ethan's Mom)

What a rollercoaster! VERY glad Ethan is improving, must have been very scary.

Brand new blood flow to the brain is not a bad Birthday present. Happy Birthday to the Big Boy.

All the best
Mark

Taly~

Major DITTO on the roller coaster ride!

Wishing Ethan and your family a Happy Second birthday!

Love and more love,

Linda (LA)

Hello,

I'm Paula, the mother of a 4 years old girl whos has been diagnosed with MM. It has been a long procedure since she began to have TIAs last year (in February). Sha has been diagnosed in January this year and now, after checking that there is not too much experience here (we live in Spain) we'll go to see Dr. Scott in Boston next week. She will have her surgery on April 6th and we are vey worried about. I would appreciatte if somebody could give us a little of hope ....

Many thanks.

Taly,

I hope everything is going well with Ethan, I'm praying for him.

Paula

Wow what a week.I'm so sorry for the complications.I hope he's doing better today.Many many prayers headed your way.
Mary Grace

Paula,  I hear Dr Scott is very good.  I am sure everything will be fine.  It is very scary when your child is so sick with a rare disease.  We will keep you in our prayers.

Donna