The 8th of April. 38 days away, 2 weeks before the school holidays, and and a week before our school cross country.. the one thing I was looking forward to most.
The 8th of April is also the first day of my new life and a new back. Coming home from holiday last week I found a letter from the hospital, telling me that the date they have booked me in for my surgery is the 8th of April. I got a bit of a shock when I first found out, as I thought it would take longer to get a date, and for the first time, the fact that I was getting major SURGERY seemed real.
It took a day or two, but I soon got over the shock and became very excited. I think the next 38 days will go slower than the rest of the year, although they might also fly by once I wtart preparing!! I don't think I will know myself at all after this is all out of the way-Less pain, more breath, less hump, less appointments, even hips, fitting clothes, being able to stand and walk for longer, there are so many benefits that I never thought I would probably get again.
My back is more sore every day, and most of the time is the most painful when I'm not doing much at all, because it gets more stiff. If anyone has any tips on things to bring to the hospital, surgery/recovery tips, or just info you think is handy, please comment!! I think the date for my surgery is fantastic, it is two weeks of school off before the holidays, then two weeks of holidays, then I will possibly start part time after that, so it could not have worked out better :D
All in all, very exciting news, and only 38 days to go!!!!
Tuesday, 29 January 2013
Thursday, 17 January 2013
Another step in the right direction..
Hello again!! Well A LOT has happened since last posting! I have now had blood tests, where not one but SIX tubes were taken!! I think i handled the whole thing pretty well, I didn't flinch, and it truly was not as bad as I had thought it would be, so I was proud :) Those were sent away and to my knowledge have come back clear as they haven't mentioned them again and have proceeded to book the next step to Surgery- An MRI. An MRI is a scan that happens in a long tube with loud noises, and big magnets. The scan itself took just over an hour, although it seemed to only last around 40 minutes. It wasn't painful, or the worst thing I've ever done, but I don't mind if I never have to do that again!! The table was a bit hard, so my shoulder and ribs were sticking out in all angles so I definitely was not comfortable, and that made my neck pretty sore, as well as the loud and continuous bleeping giving me a lasting headache. I wasn't claustrophobic at all, they do it really well. It's light and open, you have a panic button and can press it if you have questions or want to stop or get out. I did use it once actually, as i could feel the left side of my left hand going numb, and a little bit of pain down that arm. I wiggled it around for a few minutes while they paused the scan and eventually it came right so away I went, and the rest went smoothly. They give you headphones so I could listen to my favourite radio station in between the music being drowned out by the noise. I came out tired and a bit stiff, but overall it went really well. I can't wait for the next step to get underway, as everything seems to be getting a bit closer... YAY! Lately I have begun to get a few pain spasms around my shoulders, neck and upper spine, but not so much that it is even really annoying at all. People have been really supportive so far, and it's great to hear that it isn't noticeable to them. :) So, I guess I'll write again soon.
Thursday, 27 December 2012
Photos of my back during November 2012
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Where I'm at now..
Over the past year, I have been introduced to strengthening pain in several places around my spine, uneven hips, ribcage and shoulders, rib humps, the occasional strange look from a classmate, decreased lung capacity during sport, and the daily struggle to find a comfortable position to sleep. These things are pretty familiar for kids and adults alike with scoliosis, but they are invisible to others. To have all of this support from scoliosis sufferers on internet forums has proved invaluable. So, if you have come across my blog with scoliosis, don't be afraid to get in touch with me and i'll send you some amazing links that have been so helpful over the past year :)
The first two appointments I have been to, only my lumbar curve has been measured. The first time it was at 42degrees, and at the second, the lumbar was at around 45degrees. The registrar I'd had told us that the thoracic curve was less, and "nothing to worry about." The third appointment, I had a new registrar. He measured only the thoracic curve. Well, it was at 50degrees. He compared it to my x-ray from May, and the measurement then was at 47degrees, which was higher than the lumbar curve a registrar had orginally measured. Now I do have some doubts about trusting the registrars, and I would prefer to be seen by my surgeon himself. This is also because at my latest appointment I was told by my registrar that it's probably not going to increase as it has moved only three degrees, so surgery isn't valid at this point. My surgeon then came in. He said yes, there has been some movement, and cautiously suggested that surgery was becoming an option if we should choose to do it.
If you don't have scoliosis, let me explain about what the number of degrees means. Under 10 degrees is medically classed as a natural curve of the spine, and is not classed as scoliosis. Before a growth spurt, anywhere between 10-40 degrees is likely to increase, so a child is generally braced. If you have passed adolescence, 10-40degrees is generally not to worry about, and not likely to increase. 40-50degree curves are in the "Grey Area", where bracing won't help, and the curve could go either way(Increase or stay the same). Over 50 degrees is considered severe as it is likely to increase even into adulthood, on an average of a degree a year. A curve over 50 degrees is considered serious enough to warrant surgery. Any curve over 100 degrees is considered life threatening, crushing vital organs like the heart or lungs.
So, my curve of 50 degrees, now warrants surgery, and was recommended by my surgeon. After the appointment we were seen by a lady who works with kids who are considering the surgery. She gave us a book explaining everything from what is scoliosis, to the full hospital stay for the surgery, to the end of the recovery period. Because I was about to start my first ever major school exams, she told me to read over the book, get my exams over, and then make a decision. After meeting with a great girl who'd also had the surgery at the same hospital, I decided to accept my surgeon's offer, and go through with the surgery.
The first two appointments I have been to, only my lumbar curve has been measured. The first time it was at 42degrees, and at the second, the lumbar was at around 45degrees. The registrar I'd had told us that the thoracic curve was less, and "nothing to worry about." The third appointment, I had a new registrar. He measured only the thoracic curve. Well, it was at 50degrees. He compared it to my x-ray from May, and the measurement then was at 47degrees, which was higher than the lumbar curve a registrar had orginally measured. Now I do have some doubts about trusting the registrars, and I would prefer to be seen by my surgeon himself. This is also because at my latest appointment I was told by my registrar that it's probably not going to increase as it has moved only three degrees, so surgery isn't valid at this point. My surgeon then came in. He said yes, there has been some movement, and cautiously suggested that surgery was becoming an option if we should choose to do it.
If you don't have scoliosis, let me explain about what the number of degrees means. Under 10 degrees is medically classed as a natural curve of the spine, and is not classed as scoliosis. Before a growth spurt, anywhere between 10-40 degrees is likely to increase, so a child is generally braced. If you have passed adolescence, 10-40degrees is generally not to worry about, and not likely to increase. 40-50degree curves are in the "Grey Area", where bracing won't help, and the curve could go either way(Increase or stay the same). Over 50 degrees is considered severe as it is likely to increase even into adulthood, on an average of a degree a year. A curve over 50 degrees is considered serious enough to warrant surgery. Any curve over 100 degrees is considered life threatening, crushing vital organs like the heart or lungs.
So, my curve of 50 degrees, now warrants surgery, and was recommended by my surgeon. After the appointment we were seen by a lady who works with kids who are considering the surgery. She gave us a book explaining everything from what is scoliosis, to the full hospital stay for the surgery, to the end of the recovery period. Because I was about to start my first ever major school exams, she told me to read over the book, get my exams over, and then make a decision. After meeting with a great girl who'd also had the surgery at the same hospital, I decided to accept my surgeon's offer, and go through with the surgery.
About me..
Hi!! My name is Kelly, i'm sixteen years old, and just over a year ago I was diagnosed with Scoliosis. When it was noticed, I was fifteen, which is quite late for Scoliosis to be picked up. Most kids are diagnosed at about thirteen or so, so when I was diagnosed, urgent x-rays were booked for about two weeks later. I came out confused and scared. I had been told that it was likely I would need some major surgery on something I myself couldn't see, let alone remember what it was called! Over the next few weeks, most of my time was spent looking it up on the internet, watching youtube videos, and reading blogs just like this one! Pretty soon the name began to stick. I realised that Scoliosis was extremely common, and a major surgery was not the only option. Pictures of teens who had the surgery carried massive rib humps, disfigured torsos, and apparently a lot of pain-none of which I had. I decided then that my scoliosis was nothing, it probably wouldn't come to anything, an x-ray was nothing to worry about!! So, finishing a surf session early, mum picked me up and with a tee shirt and shorts chucked over my bikini, we went down to the hospital. I'd never had an x-ray before, so as well as being a bit scared I was pretty curious. I went in, and struggled to put a cloth gown on that would have fit a giant quite well, not to mention spending five minutes finding the ties at the back to hold the gown closed. The x-ray room was small, with a glass wall that the radiologists stand behind to protect themselves from the radiation. Great, I thought. I get to stand in front of the radiation, full beam. Hugging a plastic board which was taller than me, with my nose almost flattened onto it, is still one of the weirdest things i've had to do, but seeing my x-ray on the screen was one of the moments that i have been most suprised in my life, exluding the time i found a bike in my living room on Christmas morning. Anyway, my spine which i had thought was probably barely noticably bent, actually made quite a defined "s"shape, as if someone had pushed down on my shoulders, and my spine had started to flatten evenly, forming two relatively even curves. Well, I was suprised. After looking at that x-ray, they put a "Superman belt" around my hips, which basically is a velcro strap with a little blue thing attached over my hip, in the shape of a shield. This time I stood, my right hip touching the board, standing sideways with my arms out in line with my shoulders. This x-ray of my spine appeared normal apparently. It was great to get my clothing back on, and walk back out into the hot sun. This process for me has happened again three times this year, each time the curve getting slightly worse, however, i'm now a pro at squishing myself onto the board, and finding the ties on the gown at a faster rate(just!). The first appointment with my surgeon and his registrar was also slightly scary, but again curiosity took over. After getting weighed and measured by the nurse, I talked timidly to my surgeon about the curve. We talked about things I participate in, mostly sport, and he decided a back brace wouldn't be a good option for me. Alongside probably being too far through my growth spurt to help, he didnt want to put a barrier between me and doing all the things I love, and especially now after reading about other people's struggles with these plastic prisons, I am so grateful to him for not putting me in one. All we decided by the end of that appointment, was that i would come back in 3 months for more x-rays, and monitor what progression might happen. Although I sometimes did think about my scoliosis, it wasn't bothering me at all, nor in the back of my mind all the time. I was just fine, for now.
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