Hello All,

I am not sure if I should be posting yet or not, but I figured it couldn't hurt.  My daughter Abby(10) had a stroke on her right brain about 4 1/2 years ago.  They did an MRI/MRA and found that the right carotid was occluded, but thought it might have been a clot.  We were put on thinners until blood and genetic tests could be done.  She went from Lovanox, to Coumadin, to baby aspirin.  

On June 7th of this year, after her birthday pool party (born 6/8/99), she had what ended up being diagnosed as 2 TIA's.  Contrary to what the radiologists notes said should be happening, she has regained all movement and has no residual effects from either the stroke or TIA's.  The only exception was a slightly abnormal EEG on the left parietal part of her brain, but this has been showing up since her first stroke.  She appears to be running mostly off of her Vertebral Arteries now for both the rear and front of her brain.  We were told that this was able to happen since she thankfully has a complete “Circle of Willis”.

In the hospital she saw two neurologists that are not her normal neuro, and then post hospital visit we saw her regular neuro.  All said it was time to go to Boston to see Dr. Michael Scott due to a possible moyamoya diagnosis.  We sent all of her scans to Dr. Scot and he called within a day or two.  He said that we will do an arteriogram in Boston and then most likely surgery(Pial Synangiosis).  He believes this may be moyamoya, is not saying it officially because he said he needs to see the results from the arteriogram.  We are scheduled for the arterio on 7/22/09 and surgery 7/24/09.  So now my whole family is in hurry up and wait mode to even see if this is moyamoya or something else.  Everyone we talk to says this is showing many classic moyamoya signs.

A bit more history on Abby.  She is a fraternal twin.  After she was born, they found several issues:  
[1.] Sacral Dimple (Closed)
[2.] Moderate Scoliosis of upper and lower spine
[3.] 7 Hemi-vertebrae in her upper spine
[4.] Laryngeal Cleft Anomaly (Flap keeping fluids from going into her lungs was not functioning exactly right)
[5.] G-Tube for feeding due to the Laryngeal Cleft Anomaly (removed at the age of 3 as she learned how to eat and drink finally)
[6.] Surgery for Nisan Fundo….something.  It has been a long time I forget the name

All of these issues would be classified as a “mid-line anomaly.”  Initially, we thought that this was not moyamoya, but instead just another mid-line anomaly in that some of her vessels just didn’t grow properly.  But the more I read, and the more I hear from the Dr.’s the more I believe this is moyamoya.

So, as I said, I am not sure if I should be posting here, but I am just trying to find out as much info as possible.  I swear I will be a neurologist before too long.  Thankfully I have good insurance that is covering most everything medical minus a couple of deductibles.  I am still having to fund the travel expenses, but have that mostly covered.

I want to thank DJ and all of the moderators for this site.  Without it I would be completely lost in the dark instead of starting to swim my way out of it.

Thanks,

Demian (Abby’s Dad)

Hey Demian

Well done for taking initiative and getting on top of all the possibilities before thay crop up.

My understanding of TIA's is that they don't generally leave you with residual effects, so I'm not sure what your radiologist meant. I'm open to correction from other members.

The procedure he's talking about, pial synangiosis, is one of a few procedures done for moyamoya. It's when the surgeon first separates a good artery from tissue above the skull, then makes a hole in the skull big enough to thread the artery through to the brain without breaking the flow, then carefully stitches the artery to the brain. This is indirect revascularisation and it takes a bit of time for the new artery to properly attach itself to the brain and start feeding it. Quite incredible what these surgeons are capable of.

I believe you are in good hands with Dr Scott, there are a few members who have consulted with him and, if I'm not mistaken, he gets good reports.

Look after Little Abby and keep us updated
Mark (Luca's Dad)

Thank you so much for your supportive responses.  I have been very busy getting ready for our trip next week.  Looks like we will be staying in the Devon Nicole house for some of the trip, and then the Courtyard By Marriott Boston/Brookline for the rest of the trip.  I will probably be posting more often once we get up there as we are staying up there about 2 1/2 weeks.

We are mostly set to go and I am getting very nervous.  Trying to not show Abby how nervous we are.  I think of all the surgeries she and my oldest son have had, this one will be the longest 8 hours of my life.  No matter how nice a waiting room is, it is still a prison to me.  

I will try to keep everyone posted.  Please pray for my Abby.

Thanks,

Demian (Abby’s Dad)

Hello Damian,

Welcome to MM family, I feel sorry about what happen to your baby. Just post your message about what was happen for the information of other MM family members here. Like others, will pray for all of us who suffer with MM deseased.  Same here until now I had not been through surgery still continued to took my oral medication and at the same time monitored by my doctor every month.

Please listen to everybody's concerns, advised tose are healthy information which could help you.

Regards,
Betty :)

I was in BCH today for Nicole's pre-op visit...I was thinking about Abby.. was she in surgery?..sending lots of love and prayers..
Aneta (Nicole's mom)