Hi, my name is John. I just turned 16 on June 8th, and I live in New York. I was diagnosed with scoliosis very recently. I've always had a bad back, and since I had to carry heavy books in my book bag in Junior High (my school didn't have lockers) my parents and I assumed that the books were making my back hurt. It wasn't an intense pain or something even that noticeable, so I guess I just shrugged it off.

Skip to the beginning of this school year- I had just become a Sophomore, and I took a jogging class in school for PE. My back pain had gotten gradually worse since Junior High to the point where walking or standing for a long time made my back hurt. I remember walking around the track, stopping because of my back pain, whipping out my cell phone and text messaging my mom that we had to see a doctor.

So we did. It was around September or October and I remember getting my x-ray taken. When the x-rays were done, the man who was taking them asked me "...Do you have scoliosis?" and I said "Well I'm not sure...that's why I'm here. Why? Does it look like I do on the x-rays?" and he nodded. I actually wasn't too worried about it at all. I figured I could just get a back brace and that would even things out.

So then we walked around to another area of the building where a doctor told us a bunch of information about scoliosis. What he said got me kind of angry. He said that scoliosis does NOT cause back pain...which only got me angry because clearly that was the reason why my back hurt.

Over the next couple of months I saw 3 different doctors, the 3rd being the BEST. Quite possibly the best in the state. He was the one who told me I'd definitely need surgery. I wasn't as scared as I would be with other doctors, because I could tell that this one definitely knew what he was talking about.

This Friday I'm getting some blood taken, and then again next week. July 12th is my surgery and I really hope this makes my back pain go away. Either way, I need the surgery because I can't have a back brace now that the growth plates in my hips are closed...and if I don't get it then my back is just going to get worse and worse. Apparently the back brace only helps while your torso is still growing, and mine's done.

I can tell that my parents feel this is partly their fault for not looking into it. My mom feels that way, at least. I don't think it's their fault at all. People are constantly thinking "what if?" or "why didn't I?"...and if you want to be a happy person you just can't think that way about things. Perhaps this is the way it's supposed to be!

UPDATE ~ The Day Before Surgery
It's July 11th, the day before my surgery, and I am FREAKING OUT. I'm not going to sugarcoat this and pretend I was just fine before my surgery, because I'm SO SCARED. I have a nervous stomach and I've been feeling sick all day. I saw Fantastic 4 with my friends, though, and it was really good. Other than that, today hasn't been the best. I haven't really shown anyone how freaked out I am. I don't want to get anyone upset.

I know my surgeon is one of the best in the state, possibly one of the best in the country, and that with all of the medicine I hopefully won't be in pain for too long, but the thought of surgery still freaks me out. I wish I could go to sleep tonight and wake up 2 weeks from now.

The only thought that's helping me through this, besides the fact that my surgeon is one of the best, is that I only have two options here. I could not get the surgery, turn into a pretzel, and perhaps be in pain for the rest of my life. Or, I could have the surgery, be in pain for a few days/weeks, and live the rest of my life with perfect posture and no more pain.

So thinking about it THAT way makes me feel better. I don't like the fact that I won't be able to bend as much, but I rather not bend than have my curves get to the point where something far worse than what I'm feeling now could happen.

Ah yes I never mentioned the specifics. I forgot what the degrees of my curves are...I remember the bigger one being around 40-50 something degrees, and the smaller one being 10-20. The rods are going to be put in from T4 to L4, which goes from the middle of my back all the way down to my lower back. I wish the curves were only in the middle of my back because then bending wouldn't become a problem (you don't bend too much with the middle of your back). Oh well.

And I guess that's it. Everyone's been wishing me luck and telling me that I'll be okay, and I know I will be, but I'm still petrified. Oh well. At least I get to eat lots of Jello (Jello is by far the best hospital food).! My next update will be after my surgery is all over with. I might do some dictating to my mom so she can keep you guys updated.

Home From Surgery
Updated July 17, 2005

I had my surgery on Tuesday and now I'm home on Sunday. A few things I'd like to say:

• My surgery was only 2 hours and I had two rods fused from T4 to L3.
• My curve went from 50-something degrees (I forgot the exact number XD) to only 10 degrees.
• I was eating the day after my surgery and I didn't throw up or anything
• I got out of bed, stood up, and walked a few steps the day after my surgery and I was already walking the halls on Thursday (two days later)
• I can go up and down steps easily.

Post Surgical Tips ~ Info About Pain
Updated July 28, 2005

I know many people who are going to get surgery are worried about the pain of the surgery itself, but there are plenty other factors that come into play that could also deal a bit of pain and fear. I thought, since I've been through just about everything that was necessary, that I'd inform -pre-surgery people about the other pains they might experience and things they might be afraid of.

PRE-OP

• Giving Blood: You may have to give blood for your surgery a week or two before the operation. I had to give 2 units. This is definitely nothing to worry about. For me, I had to go to a certain wing of the hospital I was going to have my surgery in that's used for blood donations. You're going to experience exactly what people who donate blood experience when they do it, and people donate blood all the time. I had to eat a cookie and drink some juice first (because since they'll be taking so much blood, it lowers your blood sugar which could make you faint. They make sure that this doesn't happen though.) and then sat in a big cushiony chair. When the doctors put the needle in my arm, it stung a bit (of course) but once it was in I was fine. It becomes an annoying pain once the needle is in, but it only stays in for a few minutes. They make you squeeze some kind of squishy hand thing to keep the blood in your arm circulating. Once they take the needle out they let you rest for a few minutes and might make you eat another cookie/drink some juice again. After this you'll most likely be very tired so you should take a nap when you get home.

Besides the above procedure, they might also prick your finger with a tiny needle to get a drop of blood from your finger. They use a pen-like tool that they click and the little sharp object inside shoots out really quick and pricks you. It stings a little but you'll be laughing at how it works rather than crying about it. I thought it was amusing anyway. I was so surprised.

I had to give blood twice. It's not a big deal at all and nothing to be scared about.

• MRIs: MRIs are a breeze...unless you're claustrophobic (fear of small spaces). If you really are too scared to get the MRI, they may put you to sleep if they absolutely need to take it. For me the MRIs were irritating more than scary. In fact, they weren't scary at all. You lay down on this bed that slides into a big tube. For my MRI machine, there were lights inside so I wasn't in complete darkness and the person operating the machine would talk to me every now and then to make sure I was okay. Then you'll hear a lot of loud banging and weird noises. You should have earplugs during your MRI because the bangs are pretty loud. The only thing you have to worry about is moving. If you move during the MRI you might blur an image and have to do it again, so try to stay perfectly still throughout the entire thing. Again...not scary at all. You might even fall asleep since it's so boring!
• The IV: When they put my IV in, they pricked my hand with a tiny needle first which didn't hurt at all and numbed my hand (they put the IV in on the back of my hand). I didn't even feel the IV going in. If they do have to put the IV in without numbing your arm/hand it'll feel like when they took blood from you, and once it's in you won't even know that it's there.
• Just before the surgery: After your IV is in you'll be wheeled into the operating room. It's pretty cold in there and you'll probably be really nervous, but there's really nothing to worry about. You can talk to the doctors and tell them how you're feeling. They'll assure you that everything will turn out fine. In just a few seconds you'll be sleeping.

POST-OP

• Back pain itself: Pain is handled very well by the doctors and nurses. It's their obligation to make sure you're not in excruciating pain. They'll probably give you a pain-pump which you will push yourself when you need pain medication. The medicine definitely helps and you shouldn't be in a lot of pain at all. Eventually they'll wean you off medicine through the IV and give you pills instead. All of these medications will probably make you feel a bit dizzy and nauseous, so take everything very slow, especially when the doctors want you to get out of bed. You probably won't be able to eat for a few days (though I was eating the day after my surgery and I never got sick). I was also walking around on the 2nd or 3rd day after my surgery and doing just fine.
• The Catheter: The Catheter is a little tube that drains urine out of your body. You'll probably wake up and discover this little tube inside of you. It's quite a surprise! You can't really feel it at all and it's not very uncomfortable, plus you'll be sleeping when they insert it. It'll feel really really weird not to pee though. You'll feel like you have to go but won't have control over it. It's not a big deal, just let everything happen naturally.
• Using the bathroom: I wasn't able to leave the hospital until I was able to have a bowel movement (lovely. and if you don't know what that is...well...it's taking a poop ). You might be worried about this since all of the medicine will probably make you constipated...or you just won't have to go at all. The nurses will probably give you pills to make you go, and once you do you can leave! Your bowel movements should become normal after this point and won't be an issue anymore.



• The ride home:My ride home was a bumpy one, but luckily the hospital was only 15 minutes away from my house. You should take some pain medicine before you go and have your parents put pillows in the car to keep you comfortable. The pain medicine usually makes you drowsy so it'll be even better if you fall asleep. Just think that this will be one of the last not-so-great experiences you'll have to deal with before you're home again.
• Pain medicine and no nurses!?: Nothing to worry about. The pain medicine they give you should work just fine. For me, I was given Vicodin and was weaned off of it just a week ago (I had my surgery two weeks ago) and now I'm on Tylenol which is working just as well. Once again, it's the nurses and doctors' obligation to make sure you're not in any pain, so if you are in pain, let somebody know! People will do things about this!
• Being Uncomfortable: When you get home from the surgery, laying in bed and sitting will be very uncomfortable. You might have a few sleepless nights during your first week home, but you'll notice that your condition gets better and better and better as each day goes by. This is my second week home and I slept about 8 hours today! That's a record so far :]
• Changing the bandage: You might have to have your bandage changed every day when you get home. I did, and my mom did a very good job! The nurses should provide you with materials but if they don't the materials you'll need might be a little pricy. All that has to be done is the bandages removed, the incision lined with new gauze, and you'll want to use this cool medical tape that's shaped like a rectangle and clear. It covers the gauze and since it's clear you can see if there's any drainage from your incision. It will also allow you to take a shower (as long as the tape is applied so none of the incision is exposed). I only needed the bandages changed for about a week.
• Having staples removed: Maybe certain doctors use stitches instead of staples (although I don't think they do) but my incision was held together with 44 little staples. I had them removed today, in fact, and it was so irritating! Each staple being removed feels like a little pinch and becomes really monotonous after staple number 30 something, but once it's all over your back actually won't feel as tight as it usually does. After all the staples are out, these little strips of tape will be lined down your back to keep the incision together. You'll probably feel a lot more comfortable laying down now (I know I do).
• Numbness: It's expected that certain parts of your body will feel numb. It's usually not something to worry about. For me, there's a little section of my lower back that's numb. Also, right after my surgery my thigh was a little numb but I regained all of the feeling in it before I left the hospital. Inform your doctors which parts of your body you can't feel, and they'll let you know if it's an issue (and it probably won't be). There are a lot of nerves in your back that are linked to the feeling in your legs and other parts of your body, and since the surgeons will be cutting through those nerves it's normal for certain sections of your body to become numb. The nerves do grow back, although very slowly, but they grow back nonetheless and you'll be able to feel these parts of your body again eventually.
• Standing up Straight: You probably won't be able to stand up completely straight after your surgery. The muscles in your back are still very weak, and you may even need some physical therapy to straighten you out completely. Doctors have assured me over and over that I'll be standing up completely straight after I'm completely healed.

UPDATE - Feb. 25, 2006
It's been 7 months since my surgery, and I feel great! I've gone back to my doctor for a few checkups and everything seems to be fine. I have my last checkup on March 10th, and then I don't think I'll even need anymore checkups unless my back starts to hurt. I've noticed that my back does get a little sore with changes in the weather (it changed from cool to freezing all at once a few weeks ago and I had a little bit of backpain), but it eventually goes away. I'm not experiencing ay pain at all, and people have noticed that I do stand up straighter! It's nice that I'm actually able to go places and stand up for a long time without any back pain, so I'm happy that I got the surgery. I don't even want to imagine what state I'd be in right now if I didn't get it!

You can talk to John on the SpineKIDS message boards, username PapercutPenguin.

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