Wow! Now we’re getting somewhere!

When I finally got to see a scoliosis specialist, it was a huge relief. The first thing they did was x-ray me and even I could see that it had got worse just from memory of what my old x-rays looked like. I was referred for another appointment in 6 months to see if there was any progression and also to get a CT scan in the meantime for some additional checks. All that went ahead much as planned but when I went back they told me there looked like some kind of abnormality on the CT scan and they wanted me to go for an MRI. It would then be back to the clinic in another 6 months. At this stage surgery was mentioned but it was very much a situation of 'well, we can do surgery if you want…'

I then had my first MRI - I really enjoyed having the MRI which makes me even more of a weirdo than I thought I was before! How can anyone like the confinement and really loud whooom whooom dicicididi click click click! Dunno, but I did, so I’m officially strange.

Anyway, it was back to the clinic for results and then I was told I was a very rare and oddball case (please note this terminology is not the official medical version!). Firstly my spinal cord is “tethered” at the site of my original spina bifida operation – if you have this or want more info, this is a really good site: http://www.neurosurgerytoday.org/what/patient_e/tethered.asp Basically it means that my cord is stuck to my spine where it should just hang freely down from your brain (eew what a weird idea). What makes me even weirder is that they then discovered my spinal cord is split lengthways into two. This is right the way through the length of my lumbar spine (and a bit beyond) – it is called diastematomyelia and is pretty rare. Of course it has implications for surgery as well and by the time I left the clinic with all that information, I had a lot to think about.

The only thing I was sure of was that my curves were getting worse – from my x-ray, by lumbar cobb angle (http://www.e-radiography.net/radpath/c/cobbs-angle.htm) was now 60º. This was an increase of 15º from my last x-ray and there is no reason to think that this progression will stop. Here’s a copy of that x-ray – even in this you can see that my head is over my right hip!