Monday, March 21, 2016

(Probably-Maybe-Probably) Surgery!

I'm not really sure where to begin, but I feel compelled to say that my feelings at this point in my life are oscillating steadily between "What did I do to deserve such an amazing life with such incredible people?" and "Why does everything have to be so difficult?"

Last Monday, I had another doctors' appointment and the orthopedic surgeon advocated in favor of me having surgery to remove the pins in my leg. He said that he is reasonably confident that the surgery would alleviate the pain in my leg (as he could feel the pins moving when I extended my hip), and he remarked that it would be "relatively low-risk for a potentially very high reward."

He also watched me walk and described my gait in anatomical terms to a fellow doctor that appeared to be shadowing him—and I have to laugh because I don't think they expected me to understand their medical jargon...but just a few short months ago, I crammed for my anatomy final exam, so I knew all too well what they were saying!

Then he assessed my spasticity (the "tightness" in my legs) and he said something to the effect of, "Given the amount of spasticity in your legs, I am AMAZED at how well you are able to function. You are remarkably mobile. Wow." I'm not quite sure what to make of that spasticity is not so great but I do well anyway? (I guess I AM transcending CP. Ha! Ok, bad joke. I'll stop now.)

My right leg is tighter than my left, which I already knew—but to give me some more range-of-motion on my right side, he also wants to cut a muscle in my right leg while he's removing those pins from my left.

All of this has left me with so many mixed emotions. First and foremost, I think I'm hopeful that maybe this surgery could get rid of the pain I've lived with for the past 8+ years.

But I'm also scared. Terrified. What if I go through all of this and it doesn't work? The pain I feel now is near-constant when I move my leg, but it's definitely tolerable. It's not excruciating. It would be AMAZING to have it gone, but what if I'm being too picky about my quality of life? "You ought to just be grateful for what you have" is warring with "If this could get rid of the pain in your leg forever, you need to take the chance and try."

And then there's the issue of recovery. It would take 2 months for the holes in my bone to fill back in, and during that period, I'd have to be SO careful (i.e., wheelchair outside the house and crutches/very careful movement indoors) because a fall would be VERYVERYBAD. All of this sounds painfully familiar to my initial break 8 years ago, and after that one, my surgeon looked me in the eye and told me that I'd never walk independently ever again, and that I'd probably have to use a wheelchair for the rest of my life.

There's nothing wrong with using a wheelchair, nothing at all. But I've worked so, so hard to get where I am and to defy those expectations. The thought of potentially having to defy them again....the thought that maybe, just maybe, this surgery could take away my ability to walk, something I've worked SO hard for....that's hard. Here I am, 22 years old and graduating from college in a few months, and I'm worried about jeopardizing my ability to walk—I try not to wallow in self-pity because I DO have a lot to smile about :) , but sometimes the weight of it is hard to bear. 

Right now I think I'm about 90% in agreement with my doctor that I should have the surger(ies), and we picked a date for it and everything. I'm at a unique point in my life where this wouldn't interfere much with career plans and the thought of living my life without pain in my leg after 8 years is almost incomprehensible, in the most amazing way. 

If I do go through with it, it's still months into the future (not until the summertime), so it's not an immediate worry. In the meantime, I'm trying to focus on all of the things that make me smile, and there are many (e.g., I made penuche yesterday and it's AMAZING!! It's kind of like a butterscotch maple fudge. If you can't imagine how that tastes, just close your eyes and think about how HEAVEN would taste and that's pretty much it! ;))! 


  1. Your fears are so real and so legitimate. I would be right there with you if this were me. The reality is (from what it sounds like) that the chances of you needing to rely on a wheelchair are very small, and the chances of this surgery helping you are great. I think the most important thing to remember is that wheelchair, crutches or walking independently YOU are fantastic. None of those scenarios detracts from the amazing person you are in your heart and soul. I know it is so hard to combat all of the other opinions you hear (and have heard) about yourself, but trust me, as someone who has been where you are: your worth does not lie in your physical ability. Your life has value because it's yours - and because you are unique in all the world. No one sees things or can share your experiences quite like you. So keep your head up and know that I am always here if you need to vent about this (or anything!)

  2. That is never fun news to take. I have kind of gotten used to the idea of surgery though. I usually have to get about one a year. I just get injured all of the time and have to get something taken out or screwed shut or put in. It is no fun but I guess that it works well.

    Natasha Shelton @ CCOE


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