Hi! I'm Erin. I'm an animal maniac, Jesus Freak, 8th grader, 13-year-old scoli-girl with awesome family and friends. If you have questions I'd love to answer them. This is my scoliosis story!

It was just a normal day going to a doctor appointment on August 31, 2006. I needed a tetanus shot, blood test, etc. - regular checkup. When the doctor had me bend over and try to touch my toes (I couldn't), she said I had a curve. So we went a few days later to get x-rays taken, that same week my brother had a physical and his doctor heard about me and referred us to a Physical Therapist. A few weeks later we talked to a surgeon.

He wasn't very helpful so we scheduled an appointment with another Dr/Surgeon in October. He was great, as in amazing. Mom and Dad and I loved him. The lady spent 45 minutes with us, went to find him (he likes to talk lol) and he talked to us for a good hour. He told us to be sure to come back with any more questions, and made sure my questions and Mom and Dad's questions were answered completely. We also found out that my thoracic (top) curve was 36* and my lumbar (low) curve was 32* instead of a 29* lumbar as we'd been told and " top curve. Ok so instead of raving about Dr. I'll continue now...

All through this we'd been researching like mad, looking at braces, the different kinds, the goals of the braces, hospitals, etc. During the internet researching we found an awesome site called *drumroll* SpineKIDS!!!! Anyways, after several Mom-Dad-me talks and lots of discussion, doctor consultation, research, etc. we decided on the Spinecor brace. The Spinecor is a relatively new brace that's flexible, will probably (to an extent if you aren't really bad) correct the degree of your curve/s. After I get the brace I will continue doing exercises as they are supposed to help reduce curvature as well.

So when we found out what we were leaning towards and then what we were sure we'd go with, Mom started emailing and calling hospitals, doctors, and surgeons like crazy. She gave my Physical Therapist and my brother's doctor (who had referred us to a PT) papers about the Spinecor to see what they thought. We continued doing research, and went with Johns Hopkins (we were gonna do that or the Shriners) in Baltimore. We're gonna drive down there November 20th to get fitted for the Spinecor and hopefully we'll get to take it home soon after. My back aches at night usually, but the exercises seem to be helping and especially the ultrasound! My PT has been giving me an ultrasound when we go in and it works really well.

Baltimore Trip Blog, Entry 1
I thought I’d be telling you now “I’m wearing the brace now and it’s like this…” but I don’t have it. And GUESS WHAT??? I learned I’m growing – extremely rapidly. Isn’t that appalling? My short self is growing?!?! Yup. But you can’t tell unless you happen to have an x-ray machine and take x-rays of my back. Why? Because I don’t grow taller. If I were normal (and who wants to be normal?), I’d grow up. But I don’t grow up: my spine collapses so that the more I grow, the worse my curves get. And I’m in the fastest growing rate of my life right now. So that’s – bad. Oh yeah, and I have a slight case of lordosis, but it’s not bad enough to address yet.

We were in the waiting room at 9:00 like we were supposed to be for our 9:30 appointment, and after sitting there for ages the lady moved us to ANOTHER room to sit THERE for ages – even longer ages than before! After a while a lady took me into a side room for an x-ray. They told us our room wasn’t ready yet so we sat in the first room. Finally they called us to a doctery room and said the doctor would be in “in just a minute”. After what seemed like a good many just-a-minutes the doctor came in, showed us the x-ray, and we then learned that in the course of only two months my curves had each progressed about 9 degrees!!! My lumbar curve was now 39, my thoracic was now 44, and my compensationary “cervical,” or neck, curve was now 28. Surgery is suggested at about 50 degrees, but since I’m so young and matured hardly at all (risser 0), we will try to put off surgery as long as possible. Surgery, unfortunately, sounds like it’s pretty much inevitable in my case.

He told us that, with the extremity of my curves and rapidity of growth, the Spinecor brace would do next to nothing if anything to help us. He strongly suggested the Boston/TLSO or “Custom” brace. The more he talked the more it sounded like the Spinecor really wouldn’t be able to help, even though it strengthened the muscles etc. etc. etc. The turtle shell, as I’ve been calling it, sounded a lot better to Mom and Dad. I still really wanted the Spinecor and for it to work, and I think they did too although now they doubted it could help me now.

We got lunch at the Subway in the cafeteria downstairs and then went back up to try on the Spinecor. I tried it on and got fitted, and an in-brace x-ray was done. We waited for another long while the x-rays were developed and finally came to us! Yay! And I had gotten a…2-degree correction on my curves. I was pretty bummed. If it was going to work at all the hospital expected at least a 10-degree correction. So, not knowing what it will be like but having heard a lot about it, we will go get molded for the hard plastic custom turtle “as soon as possible.” Two weeks following my mummyment of plaster the brace will be done and we’ll pick it up.

We will most likely have to go shopping for some bigger tops and maybe even jeans. I’ll have to take the brace off for singing in the ensemble I’m in because it’s difficult to breathe using your diaphragm in deep breaths with it on. When it gets too small I’ll have to get cast again. I have to take it off for “contact sports” (yeah right! Me, playing football or soccer!) to prevent injuring other players (haha that part was funny). Swimming will count as in-brace time so I think I’ll suddenly be swimming a lot. During my hour out of brace I’ll probably be singing, showering, and exercising/stretching.

Well, I’m told the plastic’s a great dry erase and autograph board as well as sticky-note spot. And I guess this way I can make its middle name be Evil Plastic Man and can threaten people (muahahahaha!). Anyways, I hope it works and since I’d freak at surgery I hope we put it off a looooong time.

It’s 4:50 and we’re in the “Virginia kind of area of Washington DC-ish,” as Dad calls it. Mom says we’re technically still in Washington DC. I guess it feels better in the car than sitting in the hospital for 6 ½ hours bored to death for the majority of the time, but I dunno. We’ll get home probably around 10:15 or 10:30.

How I Finally Got It
Ok so the day after we got home Mom called several places that make braces and got me scheduled for the soonest possible date open. So we went in and waited and then got called back to a little room, changed into the undershirt and short shorts I brought to get measured in, and waited for the guy, who totally invaded and proceeded to pop my personal bubble multiple times to measure me in all sorts of places. After waiting like a week or something we got a call saying they weren't making the brace because it turns out the insurance wasn't going to pay for it!!! So we had to find ANOTHER place.

When we did, we went in asap. The orthotist was really nice, funny, and a little weird (as he described himself). He popped my bubble too, just not as much. This orthotist actually didn't take measurements, but cast me for the brace. He gave me this thin, long, stretchy, scratchy sock thing to put on, with holes for the head, arms, and legs (it came down to my knees). He pulled it out of a box like you would a paper napkin at a fast food restaurant. He told me to put on two overtop of each other, and then he came back in and put a thick tube the size of a hose up my front between the two layers of "beautiful dress" as Mom called the things. He had a pail of warm water and 2 or 3 ace bandages and a packet of gelly Stuff. He put the Stuff in the water or something, dipped the ace bandage in the pail, and quickly began mummifying me with it from under my arms to my pelvis, thus beginning the casting process - one of the weirdest and funkiest things I've ever experienced. He had me get up on the table real fast, lay down on my back, and bend my legs so my feet were flat on the table. It took about 3 minutes to harden and then he got a "power tool" and told me how he was gonna cut me out of the stuff. He cut the cast and the first layer of sock-doohickey, and avoided cutting me by cutting down the front on top of the tube (*gasp* it did have a purpose!). All I felt was a vibration.

After that I changed back into normal clothes and he showed me a bunch of pattern choices for the brace. It was crazy - bright neon rainbow, blue with blue snakes, Dalmation spots, pastel blue with butterflies, pastel blue with smiley-face daisies...yeah. I chose white.

Yesterday we picked up the brace, and I took him the "101 Reasons To Love Your Brace," printed out, on my suggestion and his request. It took two hours, because he had to fit it, adjust it, take it on and off a few times and show Mom stuff, have me walk up and down the hall, then go "bubble" it out on my hips because they're so bony the brace was banging into my hip bones and it hurt. So after bubbling it out several times we took it home and he said he would make another brace while I wore the already-made one because he likes his braces to be smooth and not look so bubbly or something. He put a pad over the piece that comes up under the arm but didn't put in the pads that were supposed to affect my spine, because he wants me to get used to the brace as it is first.

Meet Turtle "Bubbles" Evil Plastic Man, my brace
Ok so it's hard plastic, and on one side comes up under my arm. There is one hole a little under the arm part on the left side, and a slitty thingy on the other side. In the back there's a slit where the 3 straps pull it tight together.

The orthotist said to wear it 2 hours on, 1 hour off yesterday, and then 3 hours on, 1 hour off today, etc. until i'm in it 23/24-7. I'll take it off for swimming (and that counts as in-brace time - WOOHOO!), contact sports (to avoid injury to other players, not that i play any) and horseback riding, since i'll need to curve my back and balance.

We're being a little more lenient with wearing the brace though since I've been going to the Chiropractor for a while now. He basically twists me up funky and cracks my pack in a bunch of places, and sometimes my neck. It used to hurt a lot, and now it only hurts a little, usually. Here are a couple pictures of Turtle.

Here you can see the front and back of Turtle or "Bubbles" as she/it's been nicknamed (due to its being 'bubbled' and my personal bubble getting popped).

The arm thingie goes up under my arm so that when I relax, my left shoulder is higher than my right, opposite to how they are naturally. It isn't very flexible but I can still manage to do things in it.

The straps have lines on them so that we know how tight to make them. The orthotist said we could loosen it to sleep, but I still woke up at 1:30 am and took it off (Mom had said I could if I couldn't sleep since it was the first night). Because of the chiropractic work going on the chiropractor said I don't need to wear it at night though, so I won't have to do that again! At least, not for a while.

I'm definately not used to the brace yet, but I'm told I'll be used to it in a few weeks.

Sudden Surgery
Ok so this was way sudden, but bye bye brace I won't wear it again except for back pain and hello creepy surgery. It makes a lot of sense that I should have it, after all Dr. Hey said today, but that doesn't mean I'm looking forwards to it. We're positive we're going to get the surgery.

I got up at 6:15 this morning, got dressed, came down, got my brace on, ate breakfast, and off we went to the appointment. They took xrays of my back standing up, leaning to the left, leaning to the right, and of my side with my arms out straight. The curves haven't gotten better really but they haven't gotten worse. Dr. Hey is sure it will get worse and nothing can prevent it; that surgery is the only and best option out there. He wants it done asap so we can stop having the "black cloud" hanging over our heads and get on with our lives. He has a daughter my age and says he's telling us as if I was his daughter and this is what he'd do with her. The scar from the inscision will be small...From T-5 to L-1.

I've sent about 5 emails to Dr. Hey about what will happen and I'm positive his procedure is the absolute best out there. He sent me detailed replies, one of which was about 5 pages long, about exactly what will happen when. I also have a friend who had the same surgery done by Dr. Hey, so I went over to her house and she told me about her experience, which helped me a lot with nervousness. I'm nervous about the pain but can't wait for this whole thing to be over. The surgery itself will be a morning surgery about 3 hours long on February the 22nd.

The Morning Of…
We checked into the hospital at 5:45 am and were given a buzzer. When the buzzer lit up and buzzed, we went through the double doors to the left of the waiting room where a nurse was waiting to take us to a pre-op room. I changed into a gown, compression hose, and grippy socks and got my height, weight, blood pressure, and did blood-work. A man came in to attach electrodes to my ankles and feet to monitor signals. After this was done, Dr. Hey came in to talk about my documentary video, my curves and their progression, and what was going to happen. He also said that, as I’d guessed, he’d have to fuse the thoracic curve and most of the lumbar curve.

After a long talk followed by prayer with Dr. Hey, the anesthesiologist came in to tell me what was going to happen and answered all my questions. After that she asked me whether I would like it administered with the IV directly or put out by gas before the IV. I chose the gas first, and then said good bye to my family and was wheeled away in the wheeled bed by two nurses into the OR (Operating Room). In the OR there were maybe 5 other people. It was a little cold and very bright – I was asked if I wanted a blanket, and I accepted. One of the ladies in there got a little mask thing and told me this is what would put me to sleep, and they’d give me anesthesia through an IV after I was out. She put in over my nose and mouth, and re-adjusted it. I remember thinking it smelled funny for about 5 seconds and for a split second being dizzy, but not long enough to feel bad. I was out before I knew it.

When I woke up I remember thinking it didn’t hurt as bad as I thought it would, although it did hurt. I was in a room with other patients and the nurses came around to everybody. After about 20 minutes I was wheeled into my hospital room. My parents were already there, waiting for me.

The Hospital
That evening my first PT came in and got me to slowly sit on the edge of the bed, stand up holding onto her, and march in place. I could hardly lift my feet of the floor, but I did it and lay back down tired. A second PT came with an assistant all the other days to walk me to the door of my room and back, and gradually up and down the hall. I tried sitting in a recliner with a lot of pillows to get away from the hospital bed, which helped a little. I threw up all the crackers I tried to eat, even if I only ate one or two, so the only hospital food I ate was Jell-O – except for a little soup nearing the end of my stay. Friends and family came to visit me every day at the hospital, which I thoroughly enjoyed and appreciated…even if I was asleep for four of them! I slept a lot.

After about 2 days my morphine button was taken away, to my sadness. I was on valium (a muscle relaxant) and another medication – the name of which I can’t currently recall – for a long time. We took meds home with us, too.

I was in the hospital for four nights. On the third I walked pretty well holding on to someone, went up and down the practice stairs, and got in and out of the practice car. Both the stairs and the car were in the “gym” and could be raised up and down to the height of your own vehicle and staircase at home if you had one. The nurses were pretty good all except for one. My pain management was pretty good most of the time, although I usually had some pain my entire stay. My worst night was the second night, when I remember thinking the pain was worse than I had imagined I would be, but it went uphill from there every day.

Home!
After four nights in the hospital I was finally ready to go home. I was set down in a wheelchair with a pillow behind me and Dad went down to bring the SUV up to the hospital entry doors. A few nurses said goodbye to me on the way out and we went down the elevator and out to the car. Mom helped me in and shut the door for me and we were off for home!

At home I watched a little TV and read a little too – mostly laying on my side with pillows packed in…That’s just how I liked to lay. I did a little on the computer, but was bored and tired and slept a lot.

Every day I could do a little more and stay awake a little longer. I slowly but surely was weaned off of medication until I was only taking valium and motrin for a while, and then just valium at night until I didn’t even need that anymore. I slept on the couch downstairs for several weeks before moving upstairs to my bed.

Now at about 6 weeks post op I can do almost everything I used to do: shower by myself, walk, jog in an odd kind of way to avoid jostling, play foursquare and knockout (even though I didn’t play this much beforehand), get on the computer, watch TV, etc. I can’t jump on trampolines or ride horses or anything like that yet, but I’m sure I’ll be able to when I’ve recovered a little more fully. I can swim whenever I feel like it and whenever it gets warm enough to, and have no restrictions except don’t lift anything way too heavy and don’t do anything that hurts.

I’m grateful that the surgery went so well, from almost 50 degrees in both curves to 0, and extremely glad we did it now at my age. The black cloud hanging over my head is completely gone, and through it all God taught me to trust Him more.

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