surgery in 11 weeks (and glad i waited)

[marmyte]

hi everyone. despite posting on various boards across the net for a couple of years, i've only just registered here and just wanted to tell my story (selfish i know but that's why we're here)

i was diagnosed with a double major curve just after i turned fourteen (i was 18 at the end of march) i'm british born and bred and i noticed most people on this board are from the US (which doesn't surprise me, awareness of scoliosis here is l-o-w despite it being something which i think affects 3/4 in 1000 people) so here in the UK, we have a different system - we have the NHS (national health service) which is funded by taxes and supposedly provides free healthcare for all (it doesn't but i'm not here to stand on my political soapbox) fortunately through my dad's job, our whole family has private healthcare (though he's just been made redundant so we lose that this time next year) but anyways, the system here is, private or NHS, once you are 16, the consent form is signed by the patient (unless of course its an emergency and you're unconscious etc)

so at 14, i saw my consultant (surgeon) for the first time. he sent me to have a brace cast which i had to wear sixteen hours a day for almost two years. i hated it and never went out in it (unless i was going to the hospital) those who live regular lives with theirs, i salute you, you are better people than i am. i kept my scoliosis a secret from my friends - nobody knows about the condition here and i couldn't be bothered to explain, talking about it upset me too much, and it meant i could have school as a scoliosis-free zone. no constant sympathetic looks and "how are you today?"s. very british of me! ironically one of my school friends once told me that i had the best posture out of anyone she knew. there's proof if ever it was needed that those who don't know, can't tell! maybe it's because i've ridden horses since i was four, but i do walk ok

my surgeon offered to operate when i was 16, but i refused. like health services, our education system is different here too. we start school when we're aged 4-5 and at 16, compulsory full time education ends with exams (GCSEs) you're then free to do what you want - most people continue their education and the current most academic form is A levels (though there is slight movement to the continental qualification - the international baccalaureate) A level courses last two years, with exams at the end of each one and after A levels, you can go to university and do all sorts of exciting things. so i'm coming to the climax of my A levels and because of where i was education-wise two years ago, i put surgery off until now.

my main point is that i'm very glad i put surgery off, and that i am in the luxurious position of being able to do so. my curve isn't dangerous health-wise and i've stopped growing (officially according to an x-ray taken when i was 17, though i'll gain maybe 2 inches with surgery) but i basically feel far more prepared for surgery now. it's surprised me how much more mature i feel, and i'm more independent and therefore driven towards recovery. i'm also more comfortable discussing my condition. i still find it tricky with family, but i've been telling my friends and they've been really supportive. surgery is scheduled for 16th july (i'll be in hospital for my mum's birthday) and i'm completely bummed that i'm missing all the music festivals this summer, but looking forward to a year off before hopefully going to university.

basically, it's not just growth you can gain from holding back, it's a healthier attitude. maybe i'm naive, but i do think it's made a difference

[susannajon]

Hi marmyte,

I think there is definitely something to be said for being in the right mental state before having surgery. I truly beleive that if you feel in control, and comfortable with the decision, you will have a better outcome. Although my daughter is just 13, we all talked about it a great deal and did a huge amount of research. She made the decision on whether or not to have surgery. She also had the final say on the surgeon. We met other kids who had already had surgery, and an older woman who had opted not to have surgery. We chatted online with tons of other patients and mothers. We went ahead only after she was 100% sure that she wanted the operation, and was comfortable with her surgeon. It has all turned out great!

[marmyte]

that's fantastic. i wish i'd been that brave when i was her age! i just cried for a week straight after diagnosis. my dad wasn't keen on me putting surgery off (he had a sneaking suspicion his job and therefore our private healthcare would go) but my mum stood by me, said it had to be down to me as i can be a miserable cow at the best of times and i feel better. it's still not going to be easy but i feel more comfortable now. i still don't think it's sunk in - i'm nervous about my exams first, excited because i get to vote for the first time next week and more disappointed that my friends are going to be enjoying the rare sun we get without me! hopefully there'll be a summer next year too ...

[susannajon]

Yes, there will be another summer, and you will enjoy it all the more with your spiffy straight back, and a super cool scar. I think your mum did the right thing! Good luck with everything.