Thursday, April 20, 2017

Major Surgery Ahead......

I'm a planner. When I can't make a to-do list with neat little boxes to figure out how to tackle what's ahead because I don't know what's ahead...I get nervous. I don't like to write about uncertainties because what if they don't happen? What if they do?!

Anyway...that's not an excuse for my lack of blogging, but now that the next few months are (a little) clearer, I'm hoping that I'll be writing here more often.

There have been a lot of changes in my life lately, but for now I'll narrow my focus to the change that most directly relates to CP. :)

If you've been reading my blog for a while (thank you!), maybe you remember that my orthopedic surgeon mentioned the possibility of future surgeries when I had the pins removed from my leg last June. He told me that we could continue the conversation in February, and I could make a decision then.

Well...I've made a decision. I'm having a spinal cord surgery called selective dorsal rhizotomy (SDR) this July, in St. Louis, Missouri. If all goes well, the SDR will eliminate or significantly reduce the spasticity (muscle tightness) in my legs. I know there's a whole lot of controversy surrounding SDR, especially in adults. It's not a good option for everybody, but I really feel that this is the right choice for me at this point in my life, and my orthopedic surgeon here (and the neurosurgeon in St. Louis, of course) thinks it's a good move too. My spasticity is hard for me to deal with, and it's only getting harder as I get older. The surgeon in St. Louis and my surgeons here said they're actually surprised by how well I'm doing, given the amount of tightness and spasticity I've got.

But here's the thing: nobody tells you that CP gets harder as you get older. When I was younger, all my doctors said that I'd stay the same because my brain damage will never get worse. That last part is true, but our muscles, bones, and joints age faster than somebody without CP. With SDR, they're hoping (we're hoping) that I'll be able to slow that deterioration and maintain my independence for a longer period of time. :) My orthopedic surgeon here said that I need to do it now though, because every year I wait means a more difficult recovery.

I can't say that I'm excited about another surgery and another hospital stay, and I know that the recovery is going to be hard. Really, really hard. Months and months of intense rehab and relearning how to walk...

I'm definitely afraid. I think it'd be weird if I wasn't.

But I'm looking forward to experiencing what it's like to move without spasticity. I can't even imagine what it might be like to take a step without my legs fighting back.

And...let me just pause and embrace my inner-five-year-old for a second...I'M GOING ON AN AIRPLANE! The last time I was on a plane, I was six years old, clutching a letter that I'd written to the tooth fairy because I'd lost a tooth a couple hours before we boarded. My family's not big on traveling, so we don't usually go anywhere farther than a four-hour drive. The end result of this is that I'm 23 and I'm ridiculously excited about flying, already wondering if I will get a window seat. :)

I'm going on the trip with just my mom, so it will be an adventure for the two of us. We're both excited-nervous, and it comes up a lot in conversation. I can say that I'm already ten times more comfortable talking to my mom about CP than I was before all these surgery plans happened, so that's been a nice little side effect of this whole situation.

Anyway, I will keep you guys updated on how everything unfolds. If you've got any SDR-related questions (about my situation specifically or because you're maybe considering SDR for yourself or your child), feel free to send me an email at transcendingcp@gmail.com. Same goes for if you just want to chat! I miss you guys.

Will post more soon! Thanks for sticking with me. :) It'd make my day if you could leave a comment to let me know that you've stopped by!