My Life With Cerebral Palsy Pt. 7 Surgery – Later Years

In my previous post I talked a little about my experiences with CP and surgeries.   They’ve been a part of my life and while the optimist in me hopes that’s a part that’s past me, the realist in me says otherwise.

Ordinarily you would expect that a kid with CP who had muscle lengthening surgery at 11 wouldn’t make it to 28 without having to have another one, but I managed it.  There are reasons for that, mainly judicious stretching and being an extremely active kid who played sports all the time.  Perhaps I should have had another, perhaps not.  The goal of any good orthopaedic surgeon is to avoid major surgery whenever possible.

So by now you’re probably thinking, if he didn’t have another muscle lengthening surgery, when what the hell is this post about?  Well the effects of rapid growth and muscle  and tendon rigidity on your body and on bones and joints is different for everyone.

In my case the cumulative impact of years of toe walking left me with a mangled , arthritic big right toe, a big bunion, and some ankle problems.  By senior year of high school this had thrown off my stride just enough that I was getting bad knee tendonitis early in cross country season and terrible hip pain.  despite the pain I ran in every single race senior year, but I couldn’t practice.  The entire season was a wash.  I didn’t run a personal best the entire year.  I’d run a race and for the next few days it hurt to walk, hurt to stand in the shower in the mornings, and the coach would forbid me from practicing.

I waited until the end of my Freshman year of college before having bunion surgery to deal with the pain I was having.  Ladies, having experienced the pain that comes with bunions and the corrective surgery I don’t know why you bother with high heels.  A crappy surgeon will just lop off the protruding bunion but what really needs to be done is to fix the toe joints, straighten out the toe and lop off the protruding bunion.  They will often times fuse some of the big toe joints as well.  Another thing that will happen is that as the big toe turns in it puts pressure on the joints of the toe next to it.  I never did have surgery on that toe, but I do have bad arthritis in it now.

I know they did something else in addition to a bunionectomy and fusing my big toe joints, and I have a smaller, second scar on my right calf to prove it, but I can’t remember what the surgeons did.  I’m sure they cut some muscle or tendon somewhere that needed spasticity relieved.  I’ll be honest, these leg surgeries kind of all meld together in my mind and I’d be shocked if I didn’t muddle up details a bit.

I honestly don’t recall all that much from this surgery, which more than likely means it was relatively easy as far as surgeries go.  I can remember having a huge, below the knee walking cast on my right leg, and a piece of metal in my right big toe that, funny enough, looked to me like I had a large paper clip sticking out the end of my toe. 

I still have hip pain, and yes, that damn toe still hurts some times.  I’m also, slowly but surely growing another bunion on it, but like before, I had a problem and I got it fixed.  Easy peasy.  If at some point in the future this foot needs another surgery, then I’ll tackle that.

Somewhere around the time I had the toe surgery, maybe even the year after the bunionectomy I also had surgery to pull some old hardware out of my right foot and ankle that had been put in their during my 1996 surgery.  I had been having issues with my ankle joint popping, snapping, and completely locking up on me.  So the summer before another year of college I decided to go under the knife, have them yank out the hardware, and send me on my way.  Simple right?  I was in my late teens and this was the only surgery I’d ever had done by someone other than Dr. Miller.  I don’t know who the guy was, but whoever he was he decided to give me something like  100 oxycodone for what was a cakewalk of a surgery.  He also gave me the nastiest scar anywhere on my body, and at the end of it all my ankle was exactly the same.  It’s no better now than it was then, and still locks up on me.  Oh well, these surgeries are a bit of a guessing game anyway, and no one bats 100.00

  I’ll never forget a few years ago, I’m sprin ting down the beach with Zack, there are some attractive young ladies walking our way, and just as they’re passing by my ankle locks, I pull up, awkwardly try catch myself, and instead faceplant at full sprint speed into the sand, and the dog looks back at me like “Dude, really?!”  To this day It amuses me, because shit, if I can’t laugh at myself, then who the hell can?

That’s it, those two simple surgeries were my last “leg” surgeries.  This is actually highly unusual for someone with CP, given the spasticity issues we encounter.  Dr. Miller was always a huge proponent of my doing anything and everything I could to delay surgeries.  I have my own suspicions as to why I was so lucky as to not ever need another major muscle lengthening surgery on my legs, but that could be encompassed in another CP post entirely.  As it turns out, I would have one more major surgery that I don’t think Dr. Miller, myself, or my family ever saw as a potential issue.

As I talked about in earlier posts, both bone and muscle growth are impacted by the spasticity inherent in having CP, and around age 18 my body had one last little growth spurt.  One of the places it decided to grow was in my lower jaw bones.  I ended up with an underbite that I could stick a portion of my tongue through.  Yep, you guessed it, it was time for another surgery.

First I had a set of braces put on which did not correct the problem, and then went to see a maxillofacial surgeon.  I can still remember standing there with my father, as the Dr. was holding a skeleton all of the cuts he would make in the upper jaw to realign my bite correctly and the titanium plates and screws that would need to be installed.  I was standing there going “this sounds pretty cool, lets fix me up” and my dad is cringing and continually asking me “are you sure you want to do this?”

January 16, 2006.  That was the day I went under the knife.  I remember because  my sister was in labor with my her first kid, my nephew Jake.  He was born right about the time I woke up from anesthesia. I look at my jaw surgery as kind of a jigsaw puzzle.  They slice up the bones in my upper jaw, move all the pieces forward, line everything back up and then bolt you all back together again, like humpty dumpty.  I also opted to have polyurethane  cheek implants put in based on the surgeons advice.  He explained that without them my face may look sunken in after everything had been moved its new spot.  So I had plastic surgery while they were in there, if you want to call it that.

My understanding is that they are extremely rough with your face during this kind of surgery.  There’s a saw involved, hammering and chiseling  as well as a good deal of brute force.  The surgeon makes incisions at the very top of the inside of your gums and…..folds your skin up off your face so he has room to work. Apparently it showed, because I can remember a few folks who came to visit me crying when they saw me.  Oh, and people didn’t want to let me look at my face.  I must have looked like I got hit by a bus, which is to say, still significantly more handsome than Mayor Bloomberg.

I’ll always remember getting wheeled out of the hospital.  My dad was waiting at the curb and I didn’t want him to see me wheeled out to the car, so I had them wheel me near the entrance and then I walked out to his car and hopped in the front seat.  Dad, who hadn’t seen me at all post-surgery, just kept looking at me, shaking his head, and saying “oh my god” over and over again while admonishing me not to talk when I’d mumble that I’d be fine.  It’s odd the things you remember and the things you don’t.  I don’t remember much of my hospital stay after jaw surgery (this is good, means it went smoothly I guess) but I remember Dad picking me up and the exchange we had.

I would say I made the right decision.  My bite, while not perfect, is far better than it was, and looking at me you’d never know I had major reconstructive surgery on my face, nor is it obvious that I have cheek implants.  Aside from my right foot being turned too far in during one surgery, I don’t regret a single one of my surgeries.  They taught me a lot about life, about taking things one step at a time, and pushing through pain and frustration even when sometimes all I wanted to do was give up.  You learn that no matter how bad shit gets, wounds heal.  Things get better, so be resilient.  Deal with what needs to be dealt with, push through it and get better, so you can get back to kicking ass.

Besides, one thing I’ve learned during my life with cerebral palsy is that the surgeries are the easy part.  It’s the post surgery recovery where the big dude in the sky really tests you.  If you’re wondering what the next post(s) in this series might be, well the sentence preceding this might give you a clue.  I think that’ll be less dry and technical than this post as well.

I am sitting here, about to hit publish on this long languishing post, and my surgically repaired toe is throbbing.  This must be some kind of karmic justice for daring to write a post about my surgeries.  Heh.

Have a wonderful Memorial Day Weekend everyone.