and she has had surgery for this before? How old is she?  Sorry, I don't exactly remember her story. 

My dearest thoughts and prayers go out to you.  This goes to show that I myself still need to be careful when pushing my limits b/c it is still possible that things come up.

Best wishes and prayers.

Hi Jennifer,

I’m so sorry to hear Paige had another stroke after all she’s been through. I sure hope you get some answers soon. She will definitely continue to be in my thoughts and prayers. Kids are resilient, I hoping and praying she’ll bounce right back.

I think I remember you saying that the donor artery was good and that she had good blood flow after her surgery, but I can’t remember if she had surgery on both sides. (?) If not, I’m wondering if it could have progressed to the other side.

Please keep us posted when you get some answers.

God Bless,
Mar

Thank you all for your concern and prayers for Paige.She is doing well and was released from the hospital this morning.You can't even tell anything happened.She has been running wild since we got home this evening.To answer some of your questions...Paige is 4 years old and she did have the direct bypass surgery on her left side in September.According to the arteriogram done yesterday,the bypass is still working great.It also showed that the disease has progressed "significantly"on her right side and that the carotid artery that supplies the right side is also supplying part of her left side.The stroke she had the other day was actually on the left side(as were her symptoms,drooping of the left side of her face).A SPECT test is being scheduled for December,when she is due back at St.Jude for her yearly check up.She will also have another MRI,which is routine for her post radiation check ups.Has anyone had any experience with moya moya causing the carotid arteries to supply the opposite sides of the brain as in Paige's case or is this normal.I have done alot of research on moya moya since her diagnosis but don't remember anything about this.Any info will be extremely helpful.Please continue to keep Paige in your prayers.Thank you all again.

Jennifer Elrod

Hey Jennifer,

I'm glad to hear that Paige is doing better.  Thanks for the update. 

I'm a little confused??  You said that Paige's symptoms were on her left side.  That would mean that it was caused by her right side of the brain?  The right brain controls the left side of the body, and the left brain controls the right side of the body.  That being the case, it sounds like her right side is doing progressively worse (not to alarm you, but per what you said above.  Given that her stroke symptoms were on her left side, that would she had a stroke on the right).  As Steph said, is there a reason the doctors are waiting? 

I would inquire promptly.  I'll be thinking of Paige, as well as the whole family. Keep us updated. 

Hugs,
Trina

Believe me,we are as concerned as all of you as well as confused.Even her doctor was confused.The stroke showed up on the left side of her brain but her symptoms were also on the left.I have a friend whose daughter has MM also and she always had symptoms on the same side just like this.Her doctor is Dr.Steinberg and she said he never could explain why it happened this way because as we all know,the brain controls the opposite sides of the body.Paige's doctor is scheduling a SPECT scan and hopefully we will know more next week about when it will be.He is also going to consult with the other surgeon that performed her other surgery.He did say that there was an area of her brain that he was concerned about and that,in his experience,surgeries typical for MM usually do not help that area,so he is going to consult with the other surgeon to find out what they can do about this problem.I'm not for sure exactly what area it is or the exact problem.I was still half asleep when we got the results Friday morning so my brain was fully functioning to ask the right questions but rest assured I will be emailing Dr.Boop this week to find out more.I am also going to be getting copies of the test results,as I like to keep everything in a folder in case we need them later on.As soon as I find out more,I will let everyone know.Thank you all again for your concern and support.

Jennifer

Jennifer,

That's right, a CT scan could miss a stroke early on.   When Daphne had her strokes - which were actually major strokes - the CT scans did not pick them up.  They weren't seen until the next day on an MRI.  A CT scan should show bleeding, but not necessarily an ischemic stroke.

It is good news that the surgery looks good, and that there's a good chance this happened awhile ago (since it is not uncommon for a stroke to occur after surgery)

Thanks for keeping us posted.  I am glad Paige recovered so well.   It sounds like her doctors are watching the right side progression and keeping a close eye on her.

Just remember you can always get a second opinion if you ever question anything.

Jenny (Daphne's mom)