Scoliosis

First I guess it would be a good idea to try to explain what it is since there may be people that don't know. As far as I can explain it (and it is a lot better explained elsewhere) it is a curvature of the spine which can occur from birth, quite often in adolescents (more usually girls), and sometimes in adults. In my case it was from birth though it wasn't diagnosed til I was 7. It needn't be a problem for anyone though it can affect some people a lot. It tends to be secondary things that are the problem though.

Having had decent net connection for a couple of years I've started joining mailing lists and things about this and decided I ought to write a website about my experiences.

I started looking at this since I was getting fed up with my height (I'm only 4ft2 and 20 so unlikely to grow) and since scoliosis makes people smaller (due to the fact the spine is curved) I though I'd try to see if there are any others who have the same problem and how they cope with it.

I've had scoliosis all my life which was diagnosed when I moved to Brighton (south coast of the UK). This was when I was 7 and it was routine checks at school that discovered it. I was refered to a wonderful consultant (Mr Morley) at the RNOH (Royal National Orthopedic Hospital) though luckily some of my appointments were at Chailey Heritage which is a childrens hospital/school which tends to look after a lot of disabled children.

Back to my actual experiences. I don't know anything useful like what my curves are though they are reasonably large since I've had surgery for them. They don't seem to be getting any worse though.

My treatment for it started when I was 9 and I had two of the vertebrae at the top of my back fused using bone from part of my rib. This was in the hope of stopping the curve from progressing too much. I was placed in a body cast (basically covered me like a sleaveless vest would, and didn't restrict movement other than too much twisting of the spine) for a while over the summer immediately after. Between that and when I was 14 I had a combination of body casts (always worn obviously) and braces which were worn all the time except when showering or for exercise.

Aged 14 I went back to RNOH (Royal National Orthopedic Hospital in Stanmore, UK) for the second operation on my back. They left it til then so that it would be after my growth spurt but I never had one. In the end they gave up waiting and decided it would be better to do it before I ended up with problems with missing yet more school work (ie before work for GCSEs started). Anyway they put a rod down my spine to try to stop it from curving more and as far as I know it worked though it leaves me less mobile in as much as I can't bend my back as much anymore and since the rod goes fairly high to the base of my neck (always annoying the radiologist since I forget to remind them) I find it difficult to turn round to look at people without moving all of me. In my opinion it has also managed to make me look a lot more twisted though I'm sure I'm making it sound worse than it is. I certainly have problems sitting back in chairs and things due to by left shoulder sticking out too much (I just recently discovered this is called a rib hump). Well the easy way to explain what I look like is to include pictures but you can go find them in my photos pages.

Well I know it's a very odd thing to do and hence it's blurred since there aren't many people that I will let take photos of me like this. Anyway, this seems to be the best which got taken at the moment though I may get someone (Ian) to have another go later. It shows what my back actually looks like (when not covered in loose clothing) and where my scars are. I'll admit to this being something I didn't actually know before the photos were taken (not really the sort of thing you can see or anything). Anyway, photo can be found here. I guess the only other thing to say about it is if I think properly and remember to stand evenly on both feet then I don't look *quite* so bad but usually I don't so this is a normal view of my back (well apart from the lack of clothes). There are better photos here.

On 7th January 2001 I had my last appointment with Mr Morley (my first after starting to be very interested in this) so I went armed with lots of questions but not enough courage to ask most of them. I did get rather scared though looking at my x-rays. I got him to measure them and they are 92 degrees corrected!!! I knew they had to be reasonably large since otherwise I wouldn't have needed surgery but it never occurred to me that it was actually quite serious (certainly haven't let it run my life, I do what I want to). The degree hasn't changed at all since the last appointment though and I'm fine in myself so there's no reason it ought to change anything. My x-rays do look scary though since there's a large part of the middle of my spine (I think my rod goes basically along the thoracic part of my spine I think (rib cage area and abou 12 (out of 24ish) vertebrae long)) which dissappears off to the right. The rod joins the top and bottom of the curve of spine to make sure it doesn't curve more but doesn't do much about straightening it. I do remember him saying that it was very stiff and there wasn't likely to be that much correction on it but it's still very scary. If I was born earlier than I possibly wouldn't be around now. Medicine nowadays is definitely something, and is always improving. Along with the curve which is corrected with the rod, I have a compensatory curve in my neck. I think that's the bit of the x-ray that scares me most since part of it almost goes horizontal. I can feel my spine both at the bottom left of my neck (just above my left shoulder and sticking out quite well compared to normal necks) and slightly nearer the top of my neck on the right side. Somewhere after this it must go to the middle since my head is usually uprightish. It explains why it sometimes seems difficult to keep it there though (especially when I'm tired). I appologise for all the wibble and incomprehension but I had to write it down since the knowledge is scaring me!

Links

The only other things I'd include here are links to various pages that exist about scoliosis. Some of them are a lot more useful than others. Unfortunately a lot of them seem to be US related but at least the UK Scoliosis Association have now got a website though it hasn't got that many details on. I will keep updating it as I search through more websites or get told about them but it may not happen very often since I have to study.

Note, this is all my opinion and any of it may be inaccurate. It is just my view.