I Have Scoliosis
Published by March 31st, 2008 in , I See Doctors.Whatchya doin’ on your back?
You should be dancing
No, no, that’s not me in that picture. I’m tanner. Plus, my spine is a lot curvier. Which, when it comes to spines, is not desirable.
As a kid, I had bad posture. “Stand up straight!” still rings in my ears, and if anyone says it to me today, they’re likely to get a punch to the throat. When I was 12, I was examined by my pediatrician. He asked me to leave the room and then told my mom I had 6 months to live. Needless to say, he didn’t really know what he was talking about. The second doctor, an orthopedist, diagnosed me with idiopathic (”We don’t know what causes it!”) scoliosis (curvature of the spine) and slapped me into a Milwaukee back brace (scroll down to view this modern-day torture device) for four hellish years in an attempt to keep the curvature from getting worse. It worked, and had I remained 16 years old forever, I might still be in pretty good shape.
But I stubbornly got older. And with age, the curvature typically worsens. If it gets bad enough, it can interfere with breathing and lead to arthritis of the spine. Muscles are stretched on one side and cramped on the other. When your spine is out of whack, everything’s out of whack.
My current orthopedist measures my curvature to determine the Cobb angle, shown in the above picture. The two numbers designate the original curve and the compensatory curve that results in the spine’s effort to keep the body upright. The lady in the illustration has a 40 over 25 curve; mine is 50 over 35.
At 50°, doctors start to talk about spinal fusion surgery. Scary, but back surgery has come a long way since I was diagosed. At that time, spinal surgery meant a full body cast and a year on your back. My dad had scoliosis (it can be hereditary), and they took a freakin’ BONE out of his LEG and jammed it into his SPINE. These days, they screw some metal rods and pins into the vertebrae and basically yank the spine into relative straightness. No cast or brace. Full recovery in about 6 months. Most people don’t end up with a completely straight spine, but depending on age and severity, most can expect a 40% to 70% improvement.
The possibility of surgery is still waaaay on the backburner for me. But I’ve been thinking about it more and more lately, because, quite simply, my back is killing me. It hurts when I sleep on my side. It hurts when I exercise but also when I don’t. I can’t sit or stand for long periods of time. It wakes me up at night and keeps me from falling asleep. Wait, let me check . . . yes, it hurts right now!
But there are other options, right? Yup, and I’ve tried them all: chiropractic adjustments, stretching, acupuncture, healing touch, meditation, yoga, creative visualization, massage, ice, heat, OTC pain relievers, UTC pain relievers, and Gus therapy.
Once I understood that surgery wasn’t quite as big a deal as I’d thought, my back started bothering me a lot more. Funny. I think this is because I’d always considered surgery to be out of the question, so I’d have to deal with this—CHEERFULLY—for the rest of my life. But now that I know that there is a possible alternative, I’m finding it harder to deal with the pain.
I’m also finding it harder to deal with having to give up things I love, like beading, because it hurts to sit upright for too long. I was trying to teach myself how to play the fiddle, but now it hurts my neck too much. I no longer take cardio kickboxing classes, because I’d have to factor in 20-minute intervals with ice packs for the rest of the day. And now I’m faced with giving up Zumba, the funnest workout in the world that makes me happier than just about anything. In that hour of aerobic dancing, I am triumphing over my condition, kicking my spine’s ass. There is such joy and a sense of empowerment in the feeling that my body can do these things. But then the muscles cool down and the pain settles in. Is it worth it? For now, it is.
Should I start seriously considering surgery?
Reasons to have surgery
- My spine will be straighter
- I will hopefully have a lot less pain and fewer (no?) headaches
- I will hopefully be more flexible
- I can do the kinds of exercise I love
- The money I save on massage therapy can go toward a second home in the Keys
- I can kick my Vicodin habit
- I’ll get morphine!
- Kickass scar
Reasons to avoid surgery
- It’s surgery! Avoid at all costs!
- I may have the same amount of pain and different (worse?) headaches
- I may be less flexible
- Exercise is supposed to be painful . . . right?
- I won’t be able to justify the cost of a massage anymore
- Vicodin is useful for other kinds of pain
- I probably shouldn’t be given morphine
- Giant scar
I’ll keep you posted. In the meantime, pass the Vicodin. I should be dancin’ right now.
If you want to learn about scoliosis:
- Scoliosis 101
- Scoliogirl! Scoliogirl’s straightforward account of her spinal fusion surgery is reason enough to vote no. She woke up from surgery with a paralyzed leg. Luckily, after a second surgery, she’s doing better. But not great.
- Diary of a Milwaukee Brace Wearer This is a heartbreaking diary entry of a young girl getting fitted for a Milwaukee brace. No, your life is not over!
I’m so glad you have to make this decision so that I don’t have to JD. I have no idea how to choose so I’m going to just offer you hugs. Damn. I will never again complain about a backache without thinking of you and feeling like a stupid dweeb for complaining.
More hugs.
fracas’s last blog post..Just for tonight, let’s pretend that we’re married.
I feel the same way as “fracas” feels. I have knots in my neck and shoulders with an occasional cramp and BOY can I complain. Now I feel like a real wimp. I hope all goes well with either choice you make, but really it seems if you don’t make the choice to do the back surgery there is no chance for improvement. I too take pills for the pain - do you really want to let your little brown bottle of happiness go for good??? J/K I wish you all the luck!
Love Lisa Lisa
Hugs here, too. JD, I’m sorry you’ve been dealt crappy spine cards and that we all can’t just snap our fingers and make your pain go away. Chronic pain really tests a person. My wish for you is that you can avoid surgery, but if you need it, I pray it gives you relief. Zumba needs you. We all know you’re the most awesome one in your class!
Kathy’s last blog post..I Asked for Donuts and Got a Bag of Lard
I’m with these guys. I get “backaches” every now and then and after a few chiropractor visits I’m good to go. Now I’m gonna start calling them whimpaches. Good luck with your decision process. My guess is you’ll be forced to face the surgery eventually as this disease does not typically reverse itself. But then I’m sure you already know that.
Fracas: Hey, what wouldn’t I do for you guys, huh? Seriously, thank you for the hugs. I love them. And never feel like a stupid dweeb. It’s all relative, you know? There are zillions of people with WAY worse problems than me, and you better believe I’m still gonna complain!
Lisa Lisa: Thanks for your good thoughts. And as I said to the Fraccy one above you, don’t ever feel like your own complaints are trivial. AND you make a good point. I do love my pills! What if I didn’t need them anymore? (also J/K!) Thanks again.
Kathy: Well, I know if anyone had the power to snap her fingers and make pain go away, it would be you; after all, you have those magical powers to cancel meetings and bionic hearing—you must have other powers! Thanks for your good wishes. And, yeah: curvy or not, I will kick everyone’s ass in Zumba!
Jeff: No, no, no! No such thing as “whimpaches!” Really. We’re all getting older and we’re all feeling it. And, I think you’re right, Jeff. The decision has probably been made somewhere deep in my brain, but it’s not yet time to make it happen. Thanks for your good wishes, my man!
I love your attitude JD! You have taken what some people would find debilitating and Zumba’d your way through it.
I think back surgery has changed quite a bit. My Dad had been putting off back surgery for the last couple of years for some collapsed discs. His pain was getting so severe his hair started to fall out. He had the surgery a couple of months ago now and he has recovered very well. However because he had waited so long for the surgery, there was some nerve damage that was beyond repair. I wish the best of luck for you what ever you decide to do.
I think I speak for everyone here, that it was a darn good thing for the world that the first Doctor was wrong!
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Yow! You make impossible decisions so I don’t have to… Good thoughts and white light to ya. Hopefully you can get some relief.
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My question-mark-shaped spine stands with you in solidarity sister! I’m embarrassed to admit that mine is just from a lifetime of slouching. I know you will make the right choice and wish you all the best. I hope and trust that the B.I.L.F. shirt will be just what the doctor ordered. Cheers!
Cindy: Oh, I love how you put that: “Zumba my way through it” inDEED! That’s how I’m going to think of any tough situation from now on: I’m just gonna Zumba my way through it!
I’m glad your dad had a good recovery, even if the results weren’t completely what you might have hoped for. It’s always encouraging to hear a “good” surgery story, so thanks for sharing that. And thanks for your very kind comments!
Elle! Thanks for the good thoughts and white light. I feel it! Mmm…white light. Very nice. Yes, I will make this decision (so you don’t have to) eventually. I appreciate everyone chiming in with good wishes.
Canucklehead: I’m pretty sure it’s been proven that wearing a B.I.L.F. T-shirt decreases spinal curvature by as much as 80 degrees! So I look forward to that. Try it yourself: Your question-mark-shaped spine will thank you!
I got my keychain (and tattoo) today - thanks so much. As a result, I also got your address - the shirt is on the way.
I’m sure the decision to have surgery is a tough one, but like Cindy, I know someone with a recent surgery experience — and it went much better than I would have expected.
My boyfriend’s mom broke her hip about a month ago and because surgery and physical therapy are so advanced these days, she’s already walking around and is coming home from the rehab facility tomorrow. If this happened 10 or 20 years ago, she probably would have been in laid up in a huge cast for a l-o-n-g time.
Not only was the surgery easy enough that she could be awake during it, but amazingly, they simply glued a new prosthetic ball-thingee on the top of her leg and stuck it back in the hip socket. She was up within a week and walking within two in a rehab facility that has live music four times a week, a bird aviary, visits from “therapy dogs” and lots of progressive physical therapy.
Obviously, your surgery and situation would be different than hers. The point I’m making though is that everyone in our family expected it to be a nightmare, but because of the advanced way these things are handled these days, it’s been a relative breeze.
If you make the decision to have surgery, I know you’d be smart enough to make sure you’re in good hands. When you combine that with the high-tech way things are done these days, it seems like it could actually a brighter picture than you might have expected in the past.
It’s such a personal decision; no one can tell you what to do. But whatever you decide, just know we’re all in your corner!
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Ouch-eee. It sounds like it’s pretty bad if you are seriously entertaining back surgery. Ouch. I’m surprised Gus therapy didn’t fix it, though. He’s very charming, at least he is via his photos.
Very difficult decision, as everyone else has already noted, though I give you props for putting “kickass scar” on the pro side.
Good luck.
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Canucklehead: I’m glad you received your fabulous prize. No hogging the tattoo—that’s for Canucklehead Jr.!
Carla: Wow, your boyfriend’s mom’s surgery sounds almost futuristic! I’m so glad everything turned out so well. That rehab place sounds fantastic! Thanks so much for taking the time to write. The more positive surgery stories I hear, the better I feel. And, yes, it’s my decision alone, but it’s sure nice to have friends for support.
Cardiogirl: I know! Gus therapy is usually very reliable. He does his best, tho. I don’t know how he’ll feel about a kickass scar on my back, but I’m guessing he’ll love me the same as ever.
He is now wearing said tattoo - pictures to follow …
Does anyone else feel the need to stretch and straighten their back after looking at that picture?
Simon: I do! Oh! But I can’t.
I have kypho-scoliois and had surgery when I was twelve, more than 10 years ago. At that time, my breathing and heart were already affected. I have two rods to hold my spine together. In less than a week, I was released from hospital. I had a brace on which I wore for three months.
I’m not as flexible as other people. I still have a hump though and my other breast is smaller than the other. I cannot wear normal bras. I have to wear sports bras because one of my shoulders is rounded. I’ve had a normal life so far until last year when I was diagnosed with muscle problems in the shoulder which is not hunched. I also have nerve problems on my right side, where the hump is. Sometimes I tires my hand easily when I write or brush my teeth.
Hope this helps.
bebe: Hi there! Thanks so much for dropping by to share your experience. It sounds like you’ve had a tough time of it. I hope your doing better and aren’t suffering too much.