Friday, June 04, 2010

A Scoliosis surprise...

I suddenly realised that I have been a little remiss in keeping you all up to date with news - instead favouring men in tutus and disability wonderings and so, I thought, since this blog started its life as some extension of the Scoliosis support forums, that I really ought to mention bendy backs from time to time. In fact, I really ought to talk about my bendy back, since this blog was supposed to be about my experiences, wasn't it?

My bendy back, despite its 30-odd degree curves, (well hidden inside my straight exterior) and held together with scaffolding and screws, serves me well. There are some who would say that I don't treat it too kindly, especially when they see how I wince when I drive over speed bumps, but there you go. Actually, I don't wince that much when I drive over speed bumps, despite the fact that I possibly drive everywhere faster than just about anyone else I know, but at least when I drive I have the steering wheel to hang on to. It's an odd thing being a passenger in a car - you have nothing to hang on to, every bump and you are tossed around like a little rag doll - to be fair, its not the getting thrown in the air I care about, it’s the coming down on the end of the rod that does the damage... in fact, several of my friends are now saying "well, you try doing that with a rod up your ar*e", before I manage to do so. Cars are kind of OK, at least my feet normally touch the floor, which helps and being able to see out the front (thus getting some advance warning) also helps, as you can boost yourself up from the seat so that the springs don't hit you in the rear end quite so hard when you land! Nope, cars are alright, its coaches and busses that are the killers. You have no idea what is coming, my little legs have no way of reaching the floor and just dangle in space until I am hurled upwards at maximum velocity, only to experience a tiny 'oh no!' moment (just like Wile.E Coyote) just before I come down to earth with a, very much unwanted, bang. This is usually followed by a string of expletives (mostly expressing the term 'ow!') and then a chorus of voices saying …"you try doing that…"!

Anyway, I digress a bit, except that speed bumps are some of the more uncomfortable (nay painful) things that go on with my back. Those of you who follow my back know that I am not pain free, but I am in a so much better place than I was when my head was increasingly moving sideways as if planning on driving with my head permanently stuck out the window
*1. I feel that I cope with my back pretty fine, I am happy with my results and well, that's about it really. My only concern really has been that I am supposed to get an annual checkup with my consultant and I have been waiting for my latest follow up since 2007. Yes, you heard me right, 2007. To be truthful, I have actually seen my consultant once since then, but only because I paid to see him privately over a concern that my physio had! I have not seen him at his NHS clinic, even though he told me that he 'wanted to keep a close eye on me'. If this is a close eye, I hate to think what happens when you slip below his radar!

It's not like I haven't been chasing for an appointment either - oh no, every 6 months or so, I phone up and speak to the Bureaucratic monster lady and she fobs me off for a bit and so on and so on. This year I decided to create just a teeny bit more and told her that I would phone her every week until I had some news and lo and behold, she discovered, while I was on the phone(!) that she did have an appointment after all. Well, fancy that….! Hmm, if anyone else ever tells me what a wonderful healthcare system we have in this country, I shall, I shall….well, do I shall something…!

Anyway, back to the beginning, having rambled off topic for much too long. I did actually get to the clinic and after an hour and 20 minutes wait (good old NHS again!) I got to see my consultant. To be fair, he is a really nice guy and probably majorly overworked, but all the same it's still not a great system. Anyway, he had a little look at me and a chat and then gave me some news I really wasn't expecting. He said, you know how you only have one joint that moves at the bottom of your back (L5), well, I fear that it is unstable …and by the way, where do you get your pain? I pointed to there (there and there) and he went Oh. Mmm. Ah. All fairly closely followed by 'we may have to look at extending your fusion - top and bottom'. I think my eyes opened wide, and my mouth went into a little tiny O shape, and it was my time to say Oh. Mmm. Ah. It was all rather unexpected really…

Next he decided to check when I last had a full scoliogram and CT scan and discovered it was in 2006. Yes, really in 2006, the year that I had the surgery done - that 2006! That really is a 'close eye' isn't it? Anyway, that's where we are now, my appointment came through yesterday for the CT and he gave me the number of his private secretary instead of me having to contact that BML again. This is so that once the scan is done, I might hope to see him before the end of the year - maybe even before the end of the summer. I actually find all the waiting quite frightening really - what if I had had to wait for my achalasia operation (which I had done privately) - there I was diagnosis to surgery in 3 months (and would have been quicker if it was easier to diagnose) - if I had had to wait 3 year, and on a good week only lost a 1lb in weight throughout that time, well, it doesn't really bear thinking about. Anyway, watch this space for more news - I promise to be a good blog mama and write often ;-)

*1 For you all across the pond, please remember the driver sits in the right hand side of the car …and yes I know that seems odd!

BTW, I know there are a ton of broken smiley links in the BML post, but hey, I only have so many hours today, so please ignore the pictures. Would you have time to examine all your oldest blog entries to make sure that they are all 100% intact? No? So - please give me a break!

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