Ashleigh at The Cleveland - Holes in the Brain

This is going to be a very short post and my apologies if I'm not getting this right with the blog - it's not something I've done before this experience.

I can honestly say that the last week has been one of the hardest of my life.  Ashleigh was good for the first two days after surgery and it blew me away just how well she could function after what had been done.  She was off all epilepsy medication from Thursday morning.  Apparently it is completely normal not to seize for a number of days after electrodes have been implanted.

From early Saturday morning (about 2 am) Ashleigh started experiencing pain.  There were periods she was good but then the pain would come again.  She talked about it being an 8 on a scale from 1 - 10.  She started seizing on Monday night and had 5 in 24 hours.  After 2 they put her back on her epilepsy medications.  On Tuesday they came and did a stimulation test to see what part of her would be affected by removing the part of the brain where the seizures start.

On Wednesday, Ashleigh's case was discussed at the Patient Management Conference and the doctors are all very excited by what they have found.  So here it goes to the best of my ability...

On putting the 7 Tesla MRI through computer analysis they found a small area of extra growth just behind the fronto-parietal area.  When the SEEG (implanted) electrodes were placed there epileptic activity was showing almost immediately.  Ashleigh had a seizure on the operating table after the electrodes were turned on.  The SPECT scan also showed the same area.  This makes Ashleigh an ideal surgical candidate.

First thing tomorrow morning (usually they would wait 6 - 8 weeks) Ashleigh is having brain surgery called  a resection.  The surgeons are going to remove part of Ashleigh's brain, including the extra growth part, that is approximately 4 cm wide by 4 cm deep in a similar shape to an inverted pyramid.  He doesn't want to use laser as there is a part he wants to be able to see.  There is more than a 50% chance of her being seizure free - better odds than we've had since the second medication when she was 3 years old.  The left side of Ashleigh's face is likely to be affected for approximately a week but it may be longer.

Ashleigh has been quiet and tired from having the electrodes removed yesterday but she is clear she wants to do this.  I am calm mostly but am struggling with anything that requires much in the way of emotional energy.  Ashleigh's father arrived on Tuesday so is here for the important parts which is important for her.  Joseph has his defensive mechanisms going full throttle.

I'll fill in more details further down the track - tonight I need to sleep to be ready for the next few days - they sound like they will be even more difficult.

      

This is whatis left from getting the information to see if Ashleigh can get surgery.