Hi, Louise,

I would really recommend that you get another opinion about surgery as soon as possible, from a doctor who is experienced with Moyamoya disease (there's a section on this website that offers surgeon recommendations, and there are a couple from the UK).

From everything I've read and learned, medical management of moyamoya is not very effective long-term, and Lydia is at risk for having another stroke.

Also, surgery could improve blood flow, and many parents notice cognitive improvements in their children following surgery (we've already noticed some improvement in our 20 month old daughter's oral motor/ verbalization skills and she had indirect bypass surgeries in March).

I really feel like the risk of NOT having surgery is much greater than any risk of getting the surgery done.   I think you'll probably hear the same thing from others on this board.

Jenny (Daphne's mom.  www.daphnestory.com)

Louise,

It is very important that you get a second opinion. MM is a progressive disease. Without surgery the only outcome can be more strokes in time.

As far as Cognitive development, my son has always had a delay in reading and writing. Until his stroke, at age 11 years, he had been advanced in math, but now has a delay there as well. He is now 13 and had the surgery 7 months after diagnosis.

As you will find on this site, everyone has a different experience with MM. That is one reason doctors have so much trouble knowing what to do. The only thing the MM experts agree on it the need for surgery.

I will keep your family in my prayers, Rena

Hi Louise and Lydia!

I am the mother of Louise, 9 years old dignosed with moyamoya in Oct 2002. We live in Sweden where there is very little knowledge of this disease but were lucky to see a neurosurgeon who was wise enough to ask an expert from Boston Children Hospital, Dr Scott, and in Dec. 2002 my daughter had indirect bypass-surgery done on both sides of her brain.
Early in this process I learned that surgery is the only successful long-term treatment with this disease and the thought of brain-surgery on my baby nearly scared me to insanity. But we had no other choice than to go for surgery and today she is a healthy, normal 9-year-old girl with hardly any symtoms at all.
So I would advice you to please seek a second opinion for your daughter.
Good luck and remember that I´ll be thinking of you.

Take care

Annica

Hi Louise.

I can tell you about my Cara..all this started when she was 2.5....."shes not ready for surgery" was always what they told us...she'd go six months symptom free then have a "spell", more tests, same comment...another six months symptom free....when on and on.

Cara was very bright, very sharp...very aware of the littlest of the little details...was amazing...and yes...it all went down hill over time to a point when her latest "spell" was stronger (about 5.5 years old)...we decided to go for second opinion after school was out..she was in kindergarten...she was slurring words,  her writing got messy, she started to have trouble reading after learning lots first part of kindergarten....then school ended...we went to the Mayo in Rochester and they highly recommended surgery within the month !!!!  So she had her first (right side)...in recovery she had a stroke on the left side showing her left side was fragile....she could not use her right hand, arm, leg...that stroke took away her personality and expressions...she had no care of anything, no fear of anything, as Daddy's girl..never asked about Daddy, ....was the scariest, saddest time for our family....she just sat there neither happy to see someone or sad when we left..........but 5 weeks between the first and second surgeries she had six hours to physical, occupational therapies...got stronger and stronger...smiled a litttttle bit but still not our Cara.
She and I head back to Rochester for surgery #2....I m more scared than ever but know that we have no choice.    Surgery was a breeze compared to first...she was asking for Mommy in recovery....they told me...I said are you serious cuz she never did.    She saw me, smiled, laughed...asked about Daddy, brothers...I couldn't believe it..was moving both arms, very alert....as if that surgery on her left gave back something.    Five days later we flew home...to a crowd waiting for us  (her three brothers, their girlfriends, Daddy....from down the walkway beyond the security...she was waving so wildly, so happy to see everyone...and they ALLLLLLLL with mouths open...."Cara's BACK....I mean her old self"   We had lots of rough spots though recovering...but each time she got stronger, and continues to do so....now at seven...is almost a seven year old....rather than at six was more like a four year old.    Everyone is different, a stroke could strike at different locations of the brain so there is no case that one can compare to itself...varies too much.....but this I can say....second opinion is definitely a MUST.....a MUST.

my prayers to you and your family,  CarasMOM