Hi Group,

My 8yr old was dx with brain tumor 05/07. She had highdose rads and chemo. She started to have TIA's 1.5yrs from dx and an angiogram showed bilateral narrowing of her MCA's and ICA's. TIA's continued so we went to see Dr. Scott in Boston for consult and another angiogram. She ended up having a stroke from the angiogram. That was 14 months ago. She has been doing really well but recently had another event. Mild compared to others in the past. We are not sure what to do.

Wondering if any of you have radiation induced MM and if so what you did for it?

Any advice welcomed!
Worried Momma,
Diane

Hi Diane

I'm sorry to hear of your daughters medical issues.

This is the first time I've heard of any form of induced moyamoya, let alone radiation induced, but I'm not an expert. I do know that Dr Scott is considered by many to be one of the formative moyamoya experts when it comes to treating children, so you're in good hands there. I would imagine that treatment of any form of moyamoya, induced or not, would be the same, and the majority of the experts suggest surgery to bypass the contricted arteries. Considering you consulted with Dr Scott 14 months ago, I can only surmise that he doesn't want to do surgery because of something to do with the tumor.

What is the prognosis with regard to the tumor? Has the radiation and chemo worked?

My thoughts will be with you and your little girl. Please keep us updated.

All the best
Mark (Luca's Dad)

Diane,

I can't add anything helpful to what Mark has already written, but wanted to add my thoughts, prays and good wishes for your daughter.

Best regards,

Jennifer

I too have no other advice...just wanted to add you and your family to my thoughts and prayers....please keep us updated.

Hillary

  From what I've read, having had radiation radiation puts a person in a risk group for having moyamoya, am I correct?  You said your daughter has seen Dr. Scott, did he do surgery on your daughter? Have you contacted Dr. Scott aobut her newest "event"? Most every child who has had strokes that I know of had been recommended for surgery so I'm not sure if she hasn't had surgery what would be suggested. I assume she's on asprin, and follows the precautions that Dr. Scott and other dr.;s recommend such as hydration. Many prayers for your family I hope you can get some answers and your daughter doesn't have any further events.
Mary Grace

Hi, My daughter had surgery last Tue Sept 7th. Everything went great. We got out of the hospital on Fridat the 10th. Planning our return flight home tomorrow. Thank you for the thoughts and prayers. She has been doing well with recovery. The last couple days she has been complaining of tingles in her left hand and is extremely tired. I guess she did just have brain surgery and it's to be expected. Dr Scott and Smith decided her left side looked ok and only did her right. Dr Smith did her surgery. I can't say enough good things about these fine doctors. I hope my daughter continues to recover well and stops having TIAs! I want her to have some normalcy in her life. By the way she is tumor free. Praise God!

Wow, What great news al around. I'm so glad your daughter is recovering well. I pray she continues to recover without complications.
Mary G.

Hello Diane,

Congratuations on your daughter's success surgery! My 5yr old son Josh also had a success surgery on last Tue. Sept. 7th and discharged friday. I am glad to hear that your daugther did only one side of brain. Josh has to do one more in few months from now. It is so hard to watch a child suffer from surgery and limit the activities but as a parent we know what is best for our child. Keep up your faith and my thoughts and prayers are for your family! God Bless You!

Best,
Kim family

"I will lift up mine eyes unto the mountains. My help cometh from Jehovah. (Psalm 121:1,2)"