This touched me...

This was posted on one of the forums and I really wanted to quote it – it’s just that I have felt like this so often, that I though it was something really worth sharing…

"I know other people have told me it takes a year or 18 months to feel normal again.

BUT -- what I suspect is, the tough part for me is realizing that I will probably need to make peace with some PERMANENT changes in how I live my life -- for instance, I don't see what I will ever again be charging around the back yard with a wheelbarrow full of mulch, or shoveling snow off the driveway. Of course, I could no longer do that in the last couple of years before my surgery anyway.

On the OTHER hand -- (are you getting whiplash following this?) -- the reality is, I would have become increasingly disabled had I NOT had the surgery. A fused spine is not natural, and it is limiting. But so is severe scoliosis. The hardest part about this condition, for me, is ACCEPTING the fact that EITHER WAY, with or without a fused spine, my back will never be "normal.""

Thanks girl for expressing this so well…I owe you.

OMG 2 years today!

Well, this is it – I reached a whole two years since my surgery for my scoliosis – so what has changed for me?

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!

Blooming call centres...!

I know I told you that we bought a new car – which was funny in itself – you see we live quite close to a big river and the only bridge is about 20 minutes away - I know, that’s not funny but let me get to it…So, I went onto Autotrader (is that advertising?) and started looking through all cars within a 40 mile radius trying to find the right one at the right price. There, it said – we have the perfect car for you – 36 miles away! Wonderful I thought – phoned the garage and made an appointment to view the car then programmed the garage postcode into the sat nav. Tim (that’s my Tom-tom’s^*1… name) said you will reach your destination in 1.5 hours! 1.5 hours I squeaked – how come? 76 miles he said (actually he doesn’t actually talk to me like that, I just squeaked a bit when I looked at the little map thingie) – turns out that yes, the car was 36 miles away, but only as the crow flies – I after all, not having an amphibious car, have to make an inconvenient detour over the bridge!

Anyway, long story short (if I can!) – I went down, looked at the car, arranged to buy it and then to pick it up a week later (time to transfer funds into the bank, garage to MOT it etc). One week later I called the bank – got through to a call centre, punched in lots of numbers including 2 security codes at appropriate points and finally got to talk to a person:

Me: “I shall be using a debit card too buy a car tomorrow”
Somewhere in New Delhi: “Oh, fine but that might trigger a security alert because of the sum of money involved”
Me: “Um, that’s why I’m calling, so that you can make sure that doesn’t happen”
Somewhere in New Delhi: “But security is very important – you wouldn’t want someone stealing your card and making a big purchase, would you?”
Me: “Um, no, but then I wouldn’t really expect them to steal my card, and having had to torture me to find out my security codes, then call you up and tell you in advance that they were going to steal money from my account…!”
Somewhere in New Delhi: “I see your point, but there is nothing we can do – the purchase may or may not go through depending on security”

…at this point I am fairly exasperated – especially since I can see myself driving the 36, sorry 76 miles to pick up the car and the payment being refused. So, I ask what I can do (politely of course) if payment is refused.

Somewhere in New Delhi: “I can give you this 0900 phone number which we will charge you at enormous expense per minute (I am putting words in her mouth here but it was a premium rate number) in case it is refused”
Me: “and what will they do?”
Somewhere in New Delhi: “Oh, they will just ask you for your security codes that you had to give to get to me and since that verifies who you are you can then tell them that you are using your debit card to buy a car”

Click……...................................

Oh, yes, and in case you are wondering – I did not trigger a security alert despite the fact that I spent £2500 on a debit card only authorised for £300 per day. This banking stuff confuses me….

^*1In for a penny n for a pound – if I’m going to advertise I may as well do it twice in one blog entry!