Well, Christmas has come and gone...

...and I had a really nice time. I ate just the right amount, drunk a bit too much and had loads of great pressies! In addition to that I smiled at more people than I normally do (and that's saying something as I grin inanely (or is that insanely) at lots of things and people and animals and even small babies sometimes - even if it it frightens them!)

Then there was the benefit of Christmas spirit - you know, all those people who would normally just snarl and push past you, or steal your parking place or force their way into a traffic jam (having just sailed up the outside lane that everyone has known was closed for the last 3 miles (grr - pet hate!)) - well, even they smiled and said - hey it's Christmas - lets just be patient. On such small things the world turns and I am grateful for them. It's snowing outside here - I'm going out for the evening and soon it will be New Year - life is pretty good. To all my readers, I hope your New Year is happy, healthy and prosperous!

Christmas is coming (and I'm gonna get fat).....

I can’t believe Christmas is almost upon us. Before we know it it will be January and what will come for me in the New Year?

I think I shall make a New Years’ Resolution to learn to sit up straight! Given a bit of surgical assistance it should be much easier than giving up smoking....*

* which I did urmmm lots of years ago now - so no nagging me about how its bad for me. Actually If I did still smoke it would be a really really bad idea as spinal fusion and bone grafts don't take very easily in smoker's bones. Why? I dunno but it's true.

HAPPY CHRISTMAS EVERYONE!!!

Risks of surgery (eeek!)

One things that came out of my review appointment (which had been mentioned before) were the risks of surgery. Because I have had previous spinal surgery and some added complications (see my earlier postings) the risks of paralysis from the surgery are rather higher for me than for many people. Amazingly the risks for normal scoliosis surgery are really quite low. I think its astounding that surgeons can do such amazing things to your spine and not actually do any damage and that normal operative risks outweigh those of paralysis. Normally, it’s only about 1 in 1,000 to a 1 in 10,000 chance and throughout the surgery they fix you up to a computer so they can tell if anything untoward is happening and make sure they don’t do you any harm. Isn’t that amazing!

Anyway, sadly my risks aren’t actually that low and I was asked how I would feel about the prospect of paralysis (although obviously they aren’t going to deliberately paralyse me – I hope(!) .............

.........(I shall have to make sure I behave in hospital before I go down to theatre just in case!).



To get back to where I was, I said that I didn’t think it would be the end of the world. I already own a wheelchair for occasional use and know lots of people who have full active fit healthy happy lives who have to spend all their time in wheelchairs; they do sport, take foreign holidays and go out to the cinema or pub just like anybody else. It’s not as if I have ever been able to run marathons so I wouldn’t miss that and I don’t have a single hobby that I couldn’t do sitting down. I hasten to add here, that I don’t have a rose tinted view of this situation at all; I know that it’s not just about sitting down all day and that there are many more things to take on board. I simply don’t wish to get too D & M* here – just accept that I know a reasonable amount about being a disabled wheelchair user and am trying to take a reasonably light hearted view for my blog, about about something that is a serious subject. Anyway, at least if it did happen I am currently young enough and adaptable enough to be able to get on with my life in whichever way I have to. The alternative is this - imagine that I don’t have the operation and end up slowly sliding down a slope of frustration and pain which forces me to use a wheelchair full time at an age when I don’t find it so easy to adapt. Now that's a scary prospect!

If you are interested in all the possible risks etc involved in normal scoliosis surgery, look at this site:

http://www.spine-health.com/topics/cd/scoliosis/scoliosis04.html

It quite clearly describes the possible complications whilst also describing the surgical process.

To end on a really positive note, the surgeon at my review appointment said that he was really hopeful that he could sort out my pain – given that the pain is often what prevents me from reaching my full potential at the moment, I feel it makes all the risks worthwhile. It's all about my future quality of life - do I have one or not.....? Oh yes, and of course I am gonna end up as one of those old ladies in a nursing home with a huge set of cool scars that I’ll be able to play “I’ll show you mine if you show me yours” – and always win…!

* deep and meaningful

Why are we waiting - why-hi are we waiting....?

Well, I guess this brings me to the present and to all that happens next. I have recently had a review appointment in which I was asked if I still wanted to go ahead with the surgery. I simply don’t see that there is any other sensible alternative for the future. The thing that scares me the most, is the uncertainty of it all – both in having or even in not having the operation. If I don’t have it I am pretty much certain that I will continue to get worse – it would be very strange for things to stop progressing for me and to suddenly wake up one day completely pain free. This is however much I really hope that this would happen. Given that this is the most unlikely scenario in the world, then what choice do I really have if I want to face my old age with some sensible quality of life. As I see it, none, so I said yes, I still wanted it done.

The wait still goes on though and my latest information is that it will be sometime between January and March. This will put my wait for surgery at around 18 to 21 months – yet another recommendation of the jolly old National Health Service. At least it means I will have Christmas at home and the chance to get totally unfit and overweight by eating too much turkey and too many chocolates. A couple of days nil by mouth should sort out those extra pounds tho’!

More things that helped me make up my mind.

Well apart from all my friends urging do it do it (- actually none of them did this and life would have been a lot easier if they had - At least I would have had someone to blame! ) My friends (at least those who are 'in the know') are mostly surprised at the severity of my curves as I have hidden them so well for so long - aha(!) who knows what other dark secrets I hide from them! I think most of them think its a good idea but no-one wants to own up to it just in case I blame them later - look at me - do I look like someone who apportions blame all around me?? Do I?

The things that helped me the most were firstly the forums – lots of people who have had the op 1 month ago, 1 year ago or 20 years ago. Lots of friendly people with helpful stories – all ready to answer any questions you have however dumb they are. Information is the key to it all for me and the only way that I could ever feel comfortable with the decision I was making. The next thing, is a book by David K. Wolpert. This book is called Scoliosis Surgery – the Definitive Patient’s Reference. This is available as an e-book – you just pay for it and then download it from http://www.curvedspine.com/author.htm. I printed it out and read it cover to cover – it covers the basics of scoliosis itself, understanding spinal fusion, alternatives to surgery, preparing and planning for surgery, what happens in hospital and the recovery process. It is just stuffed full of good information (although I can’t comment on the hospital/ recovery bit – yet!). If you are in the USA you can actually buy it as a proper book too – either from http://www.scoliosis.org/ (NSF) or even from Amazon. Finally, and I guess this has made a huge difference to me – are the other people that have blogs too. They are all a huge source of inspiration to me. They’ve been tinged with horror too – all that talk of pain and all, but still just all the things I want to know. Thanks (in order of those who were first to get sliced and diced) - Kat, Monie and Spinewhine!

Something that helped me make up my mind

Someone on one of the forums has put together a questionnaire to help you in the decision making process. Up to the point that I did it I felt I was very 50/50 about the need to get it done - I did the survey and found out that I only had 1 'shouldn't do it' and everything else was 'should do it'. Ooops - shows what great judgement I have. Anyway, it's interesting and you can find it here:

http://www.scoliosislinks.com/ShouldYouHaveSurgery.htm

I had better mention at this point that the compiler is not a doctor or any kind of medical person (as far as I know) but has had the surgery herself and seems to know an awful lot about it. Information is strength I think in this kind of situation - if you visit any of the forums on a regular basis (even if all you do is read them) - it's amazing what you will learn - and sometimes it's to do with scoliosis too!

Well, I made my decision (finally!)

Finally I went back to the clinic and told them I had decided to go ahead – turns out they had already put me on the waiting list 6 months before and said they would have taken me off if I had told them to. Obviously they were much more convinced by the whole idea than I was at that stage...

All my friends say things like ‘your health comes first’ but I was still uncertain really – I can’t say why. I think that for all the problems I have, I know what they are right now. The only thing is that I also know they are getting worse. I know that it is much more painful to do things that were easy a few years ago. I now use a cane to walk – it helps with my balance, reduces some of the sideways impact when I walk and the extra push I get from my arm helps to propel me along. My many multiple walking speeds, which used to be slow, very slow, dead slow and stop have now simply become dead slow (and stop of course) – I have no other speeds in me any more and yet still I don’t want to give in to it. I have a wheelchair which I use if there is extended walking involved, but most of the time I am too stubborn or proud to use it and end up paying for my pride for days (or even weeks) after. This is even when I have a really cute set of wheels – not for me the drab grey of the National Health chair – oh no ! – my chair has a purple frame and front wheels which have flashing lights in them as they go round. This is all very appropriate for me – purple and flashy could be my middle names! (Hee hee!)

I know in my heart that things are not going to improve and that life is going to continue to get more difficult but despite all this, I still wonder if I have made the right decision. Why? I know I am not alone in this – so many of the wonderful people in the brilliant forums (see My Links) seem to have second thoughts about the surgery - because of uncertainties some never agree to have it and even many of those who have gone through it are wracked with doubt beforehand. Maybe it's because while we are all able to cope in our own way (even if that gets more limited with time) we feel that we're doing fine because we are coping? For me, as much as anything, I guess it comes down to the fact that I never compare myself to people who have no problems - but tend instead to make comparisons with people who have far worse problems and then thinking that my life is really OK - that somehow it's not so important to straighten out my spine after all. Odd, isn’t it…

Decisions decisions....

I guess this is where my story starts to get just like anyone else’s who is considering scoliosis surgery. Of course there will be many parallels in my history, progression of pain and magnitude of the curve, but not everyone has any other spinal abnormalities.

Many long hours have gone into considering whether I should have surgery or not. My sideways lean has now gone over so far that if I don’t bend one leg when I stand I am in constant danger of falling over but still, every time I have a relatively pain free day I wonder if I’m doing the right thing or not.

These pictures show my curves nicely – the one with the line on it shows the actual location of my spine.



I look at them and think it can’t be right to be walking around like that – especially not when it can be straightened – if not totally, at least to a sensible level. If I leave it and it gets worse then all sorts of internal organs get squished and it is going to get more and more painful – so why aren’t I just jumping up and down at the prospect of getting it done? Actually jumping up and down is not something I’d be much good at since nature did not bless me with that good a control of what my legs can do. But still, you get what I mean!

Anyway, it’s a big operation. There are lots of risks to consider, it will hurt (of that I am sure) and altogether it’s not a decision to be taken lightly. I spent many months agonising whilst waiting for my next appointment at the clinic to see the surgeon again. The outcome of that will be another posting. Still, at least you got to see the scary pictures of me without a shirt…