Friday, April 13, 2012

My Life With Cerebral Palsy - Pt. 3 - Surgeries - Early Years

When you grow up with CP, surgeries are just a way of life.  Surgery, recovery, physical therapy.  That's how the cycle goes.  You fix the problems as they crop up and you deal.  I realized recently that I'd never really written anything about my surgeries beyond a simple "hey, here's what I'm going into surgery for" and a "hey, I'm out, I'm still alive."  So, here's my attempt at chronologically documenting those experiences.  It might not end up being that interesting, but I'm writing this for me, not you.

As you'll recall, CP creates excess spasticity / rigidity of muscles.  As I grew up that meant surgery to relieve both the spasticity and other issues like bone deformities.  I believe the technical term is "muscle lengthening surgery."  In layman's terms, what the orthopaedic surgeon does is cut the muscle, stretch it out and then sew it back up.

Every few years as I grew up I had to have these surgeries.  I can't say how many surgeries I've had, because honestly I'm not that sure.  five or six maybe?  I know the first surgery happened when I was still a blue eyed, curly white blonde haired toddler in the 80's.  I don't remember anything from that surgery and I believe it was the only one in which my quadricep muscles were cut.  Those cuts are by far the worst two scars on my legs, and part of the reason I either didn't wear shorts, made sure they long growing up.

I think I had muscle lengthening surgery in 1992 but again, I don't recall much of anything from that surgery.  The only thing I can remember were the yellow and maroon casts.  If memory serves me right they would have done the muscle lengthening surgery on both sides of my groin muscle, both hamstrings and both calves.

The first surgery I do remember was in 1996.  This was, I think, my last major muscle lengthening surgery.  At the same time I had bones in my right foot and ankle cut and the foot turned inward to improve my gait.  If you look at me walk today you'll notice that my right foot turns inward quite a bit.  This is why.  It was turned in with the expectation that it would gradually straighten itself out.  That didn't end up happening, but then these surgeries are always a bit of a guessing game.

I remember quite a bit from my surgeries from 1996 onward, but the timeline and which events occurred when tends to be hazy, which is a large part of the reason why I've put this post off for so long.

1996 was, in my opinion my toughest surgery.  I'd had surgery on both my muscles and the bones in my right ankle, and they had to cut my right achilles tendon to relieve the spasticity.  To this day I have very little strength in that foot, can't push off much at all, have limited range of motion, and tend to slap that foot when I walk. My roommate and I are working on improving that in the gym, and I'm working on walking more correctly.  I can do it when I concentrate, as he consistenly reminds me.

That year, 1996 I'd gotten a $5 buzz cut on base because I thought that was "cool" and my favorite hockey team, the Colorado Avalanche had won the Stanley Cup.   Joe Sakic, Peter Forsberg, Patrick Roy.  If you watched hockey back then you remember.

I recall they made me drink this terrible stuff to calm my nerves.  It was supposed to be bubblegum flavored but it was awful, wretched crap.  It did however, make you not remember actually lying down on the operating table as the anasthesiologist put you under.

What I do remember was waking up.  I came to, leaned my head sideways and promptly threw up.  Nausea is normal, since they pump you full of as much morphine as your body can handle, but this wasn't morphine induced.  I had a bad reaction to the type of anasteisia used and probably wretched 30+ times.  This isn't good since every muscle in your body tenses up when you puke, including the ones you've just had surgery on.  I couldn't keep anything down until the anasteisia was completely out of my system.

For some reason when I think about the pain I remember alternating between the kind of searing pain you never forget and feeling completely numb from the waist down like my legs weren't really there even though I could see them.  Morphine, and that little red button, by the way, are amazing.  The ungodly itching is not so great. They pump you full of benadryl, but it's still terribly itchy.  Not being able to use anything from my waste down made for a very frustrating and embarrasing hospital stay.

One night I ran out of morphine.  I woke up in the middle of the night, hit the little red button and... nothing.  The nurse heard my screams, came running and we waited what felt like an eternity for a doctor to show up.  He shot a bolus of morphine into something attached directly to my lower back / spine and the pain subsided.  They say pain sears things into your memory, and they're right.  I've never forgotten that.

That's not to say I don't remember good things about my surgeries.  I remember friends and family coming to visit, my sisters laying in bed with me for pictures, and us all driving remote control cars around my room and down the hallways.  I remember my sister's husband and my siblings "borrowing" my wheelchair and having races in the hospital.  I'm sure the hospital staff loooooooved us.....

Mostly though, surgeries just suck.  They are what they are, just a thing you've got to do, but the reality is they still suck.  I always had an independent streak as a kid. As an 11 year old who could now not get out of bed, nor even shit or piss without direct and uncomfortable "assistance" from nurses, the overwhelming feeling I had was one of frustration.  I think that was always the most difficult thing, not the pain.  Well....that and the post-surgery recovery. (which would probably be a more interesting post than this one)

I could talk about recovering from surgery, PT, Stretching, what school life was like with bright green leg braces and / or being confined to a wheelchair, but such things will have to wait for another post.  One memory that immediately comes to mind is the time after the 96' surgery where I was carried & dragged out of the house on a comforter to be driven to the ER in the middle of the night.  Fun times.

I would have 3 more surgeries in the 2000's, although only two of them were major. The other surgery wasn't even done by my regular surgeon, and all they did was put me under, cut me open, shave off some bone and yank some metal plates and screws out of me.

I'll talk about those in the next post.  Hopefully I'll get that up sometime soon unlike this one, and I suspect my memory of those surgeries will be far better.  This post has been sitting here far, far too long because it was unfinished and I was unhappy with it.  Oh well, I think it's time to finally hit "submit."  I mean, it's here, I may as well post it, right? :)


Alan said...


And oh yeah, morphine is the shit.

It's the only thing that kept me sane when I broke my back.

Weer'd Beard said...

You're a tough son-of-bitch.

I can only imagine what you went through.

breda said...

I'm just going to second what Weer'd said, especially since I know a little of what you've been through, being part of the Kids' Multiple Surgeries Club myself.

Thank you so much for this post. I just wish I hadn't read it at work ;)

Mike W. said...

No Weer'd. I had / have it easy compared to a lot of kids with CP. I'm very fortunate.

Breda - Yup. I posted it while at work.

Alan - Yes, opiates in general are great stuff.

Bill Rosich said...

Oh, my. I had no idea CP was that involved. I knew about the "shaking," but that's it. You must indeed be one tough SOB. I can't even imagine that kind of pain and knowing that more surgeries are probably looming in the future. I have a whole new appreciation for people with CP now. Thank you for sharing this very personal information.

Julie said...

interesting read - thank you for sharing

Laura said...

I vaguely remember all three recent surgeries.

And really, all I can say is this: <3. You tough, stubborn bastard you.