Surgery Conference. Yuck!

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A year ago, we were looking at the reason Ryan was having seizures and where in his brain they were triggering…we learned of MTS. [Mesial Temporal Sclerosis] they don’t know what comes first… the sclerosis [scar tissue] or the seizures. As seizures continue and if they are triggered in the same area all of the time, that scar tissue will continue to be there and sometimes get bigger. If seizures are triggered somewhere else, scar tissue could end up in a different part of the brain. From MRIs, we know that the MTS is on the left side of his left brain.

With this, they talked about the possibilities of brain surgery. They mentioned there were three different steps as they don’t just open a small head to do surgery and rake things out if they don’t have to…especially if it doesn’t need it.

1. Neuropsych Evaluations
2. Hospital visit where they try to provoke seizures.
3. Pet scan

Last summer, we went through a series of neuropsych evaluations. At the end of it, Ryan was barely diagnosed and put on the autism spectrum. [If that’s being a typical 4 year old or really ‘autism’, that’s for another day!] The results went to a conference and surgery team.

We spent 15 days – what was supposed to be 7-10 days – in the hospital while Ryan was being monitored on the EEG. They wanted him to seize so they could more accurately see where the seizures were coming from. I couldn’t pray for seizures…nor did I want him to!
He didn’t seize – even off of all of his medication and trying to provoke him with sleep deprivation, video games, and even a strobe light! Those results went to the neurosurgical team at a conference about upcoming surgeries…and this put us at a stand still for Ryan being looked at for brain surgery. Brain surgery where the team talked about possibly taking the seizing part of the brain out…totally.

The last thing they talked about doing before knowing Ryan wouldn’t seize in the hospital visit, was a pet scan. They said this was the last thing they needed for the surgery conference if it went this far. When I talked to the nurse last year about it, it didn’t sound any more appealing than it did when I talked to her about a month ago when I scheduled the appointment. We scheduled it because since last August and the medication change, Ryan has shown different seizures. And he’s still seizing…which right there is not what we need or want. The pet scan is on a mobile unit that is at the hospital once a week and drives around in other areas throughout SE Wisconsin.

Hmmm….ok…

So the pet scan was scheduled and it was something I asked for LOTS of prayers for…as, once again, these results will also go to the neurosurgical conference, and I don’t want my boy having another brain surgery…more to come! Including everything leading up to the time we left the hospital after the scan.

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