Neurology Update

 In my last update, I forgot to mention why I felt inspired to try and make the purple tie-dye shirt. 

Lee-Anne had an appointment with her neurologist. It was going to be the one where we talked about treatment options for her epilepsy. However, before it happened my family in Guelph's house burned down.

So we were at Wal Mart buying an air mattress for my brother when we came across a single purple shirt in my size. Being the colour for Epilepsy Awareness Day, this felt notable. I'd searched high and low for one, eventually being reduced to dying my own.

Even though the meeting wouldn't be on the day, I took it as a sign to wear the shirt for the appointment. This sense of fate was reinforced when three of my coworkers and a bunch of members were wearing purple. It was unusual enough that people were remarking on it even though they didn't have context. When I told them, everyone was very enthusiastic and we took a picture.

It was my second time wearing my shirt, and for one of my coworkers, it the first time she'd worn hers. Despite this eery coincidence, the appointment would not be as eventful as hoped. 

Originally it was supposed to happen four to six weeks after her examination. They did meet with us on that timeline and I'd gone as far as to take the day off work to go to Toronto with her. But the neurosugeon had nothing to say because they hadn't received the report of her brain activity yet.

When they got the data, they still needed a panel of specialists to have a discussion on treatment options. We received a copy of the report and I've blogged about it. The main takeaway was that her seizures were coming from a spot a little deeper in the brain than we thought.

So they had their panel, and then we needed to have a meeting with her neurologist to discuss the report. This brings us to the appointment relevent to this post, the one I'd bought the purple shirt for.

He mostly told us what we already knew, that the data showed her seizures were in the insula, not the left temporal lobe like they originally thought. As we suspected, this invalidated her from traditional surgery. However, he did offer a more modern option, in which the procedure is done by laser. Instead of opening the skull, the part of the brain where the seizures are formed is targeted and burned off. It's between that and installing a magnet in the back of the neck, which was the only alternate solution we'd known about beforehand.

But the neurologist wasn't able to move things forward, and said the next step would be to talk to a neurosurgeon. This is frustrating because we already talked to one four weeks after her observation. We're at 19 weeks as of the neurologist's appointment. We'd thought this would be the one where we'd learn definitively what our choices are. It will likely take another three to four months before we can see the neurosurgeon again. If all goes well, I think we'd need time to consider options after having them proposed, and then there would be a wait to have whatever treatment option we chose implemented. I can't see this going faster than another nine months.

So despite the timely discovery of a purple shirt in my size and the positive omen of people at work coincidentally wearing the same colour, the meeting didn't amount to much.

All this to say, it reminded me that I got a ti-dye kit for Epilepsy Awareness Day. I never used it because I wound up making a solid purple shirt instead. Which lead to the theme of my last post.

Sorry for the shaggy dog story. I didn't know how to include all this in a way that flowed with my previous topic, so I just shared tie-dye pics.

As an aside, tomorrow is mine and Lee-Anne's first year anniversary.