Firstly, I no longer check in on the scoliosis forums (http://www.scoliosis-support.org/ and http://www.scoliosis.org/forum/) every day – I still try to do so every week, as I hope that maybe I can help someone going through what I have been through. Experience is a wonderful thing and I cannot thank enough the people who had been there and done that (and helped me by using their experience) but also those people like Ly & Kat who went through it all with me (Kat just one day away). All these people all over the world helped me get through something that seemed very overwhelming at the time and I really hope that I can return the favour.
Now I am so far post op, you might wonder whether or not my scoliosis still has any impact on my life, but I have to say that yes, it does. Firstly (and this is something that my physio reminded me of the other day) I still have two curves of over 30 degrees. This is the kind of curvature that many people start asking questions about surgery and whether to do it or not due to the impact on their lives and so, despite externally looking straight as a die, I still have all that going on inside and it's the kind of thing that would make a difference to anyone’s life. The external straightness though is wonderful – having gone from such a pronounced list to one side with a big rotation to barely rotated and with my head firmly over my middle, I am delighted. I cannot believe the work that my surgeon did to get me like this – I had a stiff, middle aged, scoliotic spine with an old spina bifida repair (with associated nerve complications) and a cracked vertebrae and he had all that to work around. So, maybe I don’t have as great a correction as some of the pictures you see, but I think he worked wonders. For me it means I am firmly held (screwed and rodded) in a position that my internal organs are no longer under threat and that’s the way it will stay until I am (hopefully) a very old lady!
So, pleased with correction? Check! What else? Hmm, I guess I should tackle the pain issue as that is the main reason for surgery for many people. Now, you have to remember that with all the above going on in my back my surgeon told me that he was not operating on me to help with my pain. If I got pain relief it would be a bonus, but I had a 75 degree lumbar curve that was progressing at more than 5 degrees per year. That was his main concern. Well, the pain thing is hard to explain – the pain I had before surgery has pretty much gone – but, to be replaced by something different. I used to have a real grinding constant pain in my lower back and lived with it 24/7. That pain, I still get, but it comes and goes infrequently. I have some times when I am pretty much pain free, although not many. Mostly the pain I get is much more brutal than it used to be, left centre back, although it can be higher or lower (by brutal I mean it will wake me from sleep or force me to sit or lie down). So, yes, in that way the pain is worse, but the flip side is that I take painkillers for it and it responds well to the pills. They are quite strong (stronger than I used to take) but they work and so I suppose the pain is better in a funny kind of way.
Three other quick issues on pain – firstly, I used to get a lot of muscle spasm in the areas compressed by my spine. In the past I have had treatment on this but it would always go straight back to being really tight. With my reduced curves, this is much better and treatment (massage) seems to be reducing it further as any loosening off that the masseur does doesn’t immediately flip back into spasm. Highly recommended!
Secondly the nerve pain – most of you know I came out of hospital with a hypersensitive patch on my leg and some areas of numbness. The nerve pain is much better and although I am still taking Gabapentin, I am now down to 600mg per day (from 2400). I am thinking of trying to drop it again – I hope in time that the nerves will settle down completely and I can stop with the orange pills, but until then I shall settle for a steady improvement.
Thirdly (and this is an issue that I know lots of post surgery people get) the pain from the incision (and especially where the ribs came from) is an issue in a way. If I do too much, that side will still swell slightly and complain. The answer really is not to do too much but hey, this is me we’re talking about! Ah yes, and another related thing – I still have no feeling at all in my stomach below my rib cage on the left hand side. It’s very weird – especially if someone strokes your tummy!
Wow, this is a long post, isn’t it? I don’t know what else to cover really – my walking is coming on (at least I can get further) although the sticks are a constant – maybe that’s why I can get further? Of course, the bonus with them is that they do stop me falling over as I still have rubbish balance. What else? Ah yes, I get very stiff at night – I always used to but through muscle spasm - this feels different from that, but still I need my bed leaver in the mornings for sure!
Apart from all of that I am fit, healthy and happy. I think I feel far fitter than I ever would have done without the surgery – I know that it has changed my life in many ways. I think too that I may just be a little more sensible but I think everyone else thinks I’m just as stubborn in my own way.
Scoliosis surgery for me felt like a gamble on my future. “Better the devil you know” I used to think, but there comes a point when the odds are stacked against you if you decide to do nothing. Maybe my progression would have suddenly stopped (and then waited like a time bomb inside me) – who knows? But anyway, I made the decision, took the plunge and gambled on the surgery. - I think it paid off, don’t you?
I shall post another update next time I see my surgeon (scheduled for February, but with the NHS, it’ll probably be July) and then another update in about 6 months time. Check back soon!
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