Hello everyone and Happy Thanksgiving.Yesterday,Paige had another small stroke,this time affecting the left side of her body.At our local ER,a ct scan showed that she did in fact have a very small stroke and she was then sent to Lebonheur Children's Hospital in Memphis,TN,where she had her EC/IC surgery in Sept.Right now she is having an MRI/MRA and should be out soon.Hopefully we will know more sometime this evening.The doctors believe that it has effected her peripheal vision in her left eye but again nothing definite.Please keep her in your prayers and I will post an update as soon as possible.Thank you .

Jennifer Elrod

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.

Jennifer,

I am so sorry that this happened to Paige.   I will pray for a speedy and full recovery.  

I don't know what to say, but you know you can get in touch with me if there is anything I can do to help.

Hang in there,
Jenny (mom to Daphne)

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

Hi Jennifer -

I'm very sorry to hear that Paige had another small stroke.  She is in my thoughts and prayers...how is she doing?

-Shari

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

jnokes wrote on Nov 25^th, 2006 at 11:20pm:

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.

Yes, it's called collatoral blood flow.  The carotid arteries supply blood to each hemisphere of the brain, when blocked, other blood vessels grow over to supply blood where needed.

You mentioned that Paige had significant progression on the other side... (this causing the stroke) are they wanting to wait for her other surgery?!   :-/

If she is showing symptoms now, it would be wise to act on it as soon as possible so long term damage isn't done!!!!

I hope things work out...please keep us updated!!

Much love and support,
Stephanie

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

Hi Jennifer,

Sorry to hear about Paige but am glad she is at home now and feeling better.

I'm with the others on this. The fact the arteriogram shows significant progression on the right side and the stroke was on the left side (right side controls left) equates to (as Steph mentioned) wise to act on it as soon as possible before any further damage.

I will keep you and Paige in my thoughts and prayers and please keep us posted.

Hugs,

Lore  

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

I forgot to mention that it is Paige's right side that has gotten worse.After her left side bypass,the right side still looked good.The bypass is still working properly,however,the stroke showed up on her left side.The surgeon did say that the stroke looked older and that it may have happened after her surgery(she had an episode right after her surgery but a ct scan came back negative for a stroke).He said that sometimes they won't show up on scans for a couple of days.I am wondering if she did have one after her surgery and that is the one showing up and the one Wed.morning just isn't showing up on her scans yet??As I said earlier,Wed. it was only her face that was effected and it only lasted for a few minutes.

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)

Hi Jennifer,

My daughter she had her first surgery on her left side of the brain in March,06. When she woke up from her surgery her right side of the body was not moving and she was not able to talk to us. For few days she could not even recognised us. The doctors said she might have a stroke during or after the surgery. She had an episode the day before the surgery. But after the episode, she was talking, moving, playing on computer(using the mouse with her right hand).  The doctors were also thinking the stroke might have happened during the episode the day before the surgery. Any ways we could  not realy find out when it happened.

Good news is that she is doing great. She went for therapies for few months. She is still going for therapy few times in a month. The therapist think, she might not have to go for long time. They have significantly redused the visit. She is going to school. As per her teacher she is doing good there.

During her recovery her right side also progressed, so Dr. Steinberg did her surgery in October,06. After the surgery for few days she was feeling weakness on both sides. As the time passing she is doing better and better. Improving everyday