Thursday, December 29, 2005
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!
Thursday, December 22, 2005
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.
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!!!
Tuesday, December 20, 2005
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
.........(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
Monday, December 19, 2005
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’!
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’!
Friday, December 16, 2005
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!
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!
Thursday, December 15, 2005
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!
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!
Tuesday, December 13, 2005
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…
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…
Wednesday, December 07, 2005
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…
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…
Friday, November 25, 2005
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!
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!
Thursday, November 24, 2005
The long long wait.......
I promised I would tell the story of my long wait - however boring it is! It really is a tale to make you want to emigrate as it involves the wonderful health service in the UK called the NHS.
After I was referred to the scoliosis clinic, I was told the waiting list to see someone was about 12 months so I was very patient and waited a whole year before phoning them up to bug them. They told me on the phone that the waiting list had extended to 18 months so, a year and a half goes by and I phone them again. Nope, they said – the waiting list is now over two years. Egad, me thinks, but 2 years and 2 months go by and I call again. Well, actually, it’s now three years they say – and bear in mind all this time I’m keeling over sideways with an increasing list to port (or possibly starboard, I never know which is which). Finally, 3 years after my original referral, I call again – oh dear they say, we aren’t taking on any new routine back pain cases, only scoliosis ones. “BUT I AM A SCOLIOSIS CASE!!I scream down the phone. Ooops they say and give me an appointment there and then for ten days later…
After I was referred to the scoliosis clinic, I was told the waiting list to see someone was about 12 months so I was very patient and waited a whole year before phoning them up to bug them. They told me on the phone that the waiting list had extended to 18 months so, a year and a half goes by and I phone them again. Nope, they said – the waiting list is now over two years. Egad, me thinks, but 2 years and 2 months go by and I call again. Well, actually, it’s now three years they say – and bear in mind all this time I’m keeling over sideways with an increasing list to port (or possibly starboard, I never know which is which). Finally, 3 years after my original referral, I call again – oh dear they say, we aren’t taking on any new routine back pain cases, only scoliosis ones. “BUT I AM A SCOLIOSIS CASE!!I scream down the phone. Ooops they say and give me an appointment there and then for ten days later…
Ooooh More Pain!
Don’t think I’m a junkie any more – I have discovered new ways of controlling my pain. Firstly – and I’m not encouraging anyone here – alcohol is a great anaesthetic! I have discovered that it is worth putting up with the pain for an evening out with friends – enough beer/red wine/ whisky / tequila and life seems much less painful. Actually I think it hurts just as much, its just you don’t care. Oh yes and then there’s the thing where you feel absolutely justified in asking for a back rub (from almost anyone) with all that dutch courage inside you!!
Anyway, as I was saying alcohol is no answer… but there are lots of things that help. I have discovered that if you take the maximum number of painkillers every day then what do you do if you have an even worse day? Rule number one – take as few tablets as you can get away with – the ones you do take will work better and you can always take more (whoopee!) Rule two – take hot baths or showers when you are stiff and painful. On the same note, buy an electric blanket – use it during the day, the night or any other time your muscles are protesting – it will help! Pillows are your friend – prop up your tender bits and don’t forget the all important back rubs. Getting someone to press gently on a muscle in spasm always helps ease it out for me. Rest when you need to and don’t spend too long in the same position – ever!
Something else that always gets me about pain is that thing they do in clinic or hospital where they ask you to rate your pain on a scale of 1-10. What does that mean?? I think everyone’s 1-10 must be different, but just in case you’re interested – here’s mine:
1. I am fine – well, the way I normally am.
2. I may have a bit of an ache but can easily be distracted from it by the right person.
3. The pain is ticking me off a bit and I really should stop what I am doing.
4. I wish it would go away now, I’m getting annoyed but I will try and soldier on bravely.
5. I have to sit down – NOW! I am getting cranky!
6. This is getting really horrible now – I can’t do anything that requires concentration and can’t get comfy even in bed – I may have to resort to daytime TV.
7. Everything hurts now even the bits that didn’t before. It hurts if I move but also hurts when I stay still.
8. My choices are to scream, cry or throw something across the room. I do none of these because I am a nice person. I wish I had an inbuilt PCA pump. (Aaahh PCA!)
9. I think am going to die.
10. I am dead!
Well, that's that. I promise not to go on about pain next time. There are much more exciting issues and besides which I haven’t told you about my long wait yet!
Anyway, as I was saying alcohol is no answer… but there are lots of things that help. I have discovered that if you take the maximum number of painkillers every day then what do you do if you have an even worse day? Rule number one – take as few tablets as you can get away with – the ones you do take will work better and you can always take more (whoopee!) Rule two – take hot baths or showers when you are stiff and painful. On the same note, buy an electric blanket – use it during the day, the night or any other time your muscles are protesting – it will help! Pillows are your friend – prop up your tender bits and don’t forget the all important back rubs. Getting someone to press gently on a muscle in spasm always helps ease it out for me. Rest when you need to and don’t spend too long in the same position – ever!
Something else that always gets me about pain is that thing they do in clinic or hospital where they ask you to rate your pain on a scale of 1-10. What does that mean?? I think everyone’s 1-10 must be different, but just in case you’re interested – here’s mine:
1. I am fine – well, the way I normally am.
2. I may have a bit of an ache but can easily be distracted from it by the right person.
3. The pain is ticking me off a bit and I really should stop what I am doing.
4. I wish it would go away now, I’m getting annoyed but I will try and soldier on bravely.
5. I have to sit down – NOW! I am getting cranky!
6. This is getting really horrible now – I can’t do anything that requires concentration and can’t get comfy even in bed – I may have to resort to daytime TV.
7. Everything hurts now even the bits that didn’t before. It hurts if I move but also hurts when I stay still.
8. My choices are to scream, cry or throw something across the room. I do none of these because I am a nice person. I wish I had an inbuilt PCA pump. (Aaahh PCA!)
9. I think am going to die.
10. I am dead!
Well, that's that. I promise not to go on about pain next time. There are much more exciting issues and besides which I haven’t told you about my long wait yet!
Saturday, November 19, 2005
Picture of my sideways shift
This photo wasn’t taken that long ago but it shows my sideways shift OK. I used to have a gap between both my arms and my side, not just on one side and no I do not have one human parent and one orang-utan parent resulting in one long arm and one short one! Both my arms are the same length – its just when I stand up straight (hee hee like here!) my one shoulder is much lower than the other. I will soon post pictures from the back so you can see why. I don’t have my shirt on in them either so it may well be time to be horrified…
Ooooh the pain…..
Well, I will try and keep this long story short although you may have noticed by now that I’m not actually good at short stories! Over the next year in work, my painkiller use got very heavy. I was constantly wiped out and my poor husband was doing everything – cooking, cleaning etc etc. My next visit to the doctors and he was telling me that the only thing he could give me for the pain was morphine and he would prefer me to take time off work and get some rest and try and get on top of things. Being in constant pain is so tiring for both your mind and body and drugs don’t help. Getting onto the track of possible morphine addiction seemed like I’d gone too far down the slippery slope and I took the advice (something I’m not good at). I had a month off, then another month and then another. It was 6 months before I went back to work. 3 weeks later I was off sick again – almost back to square one and my employer decided to medically retire me.
I haven’t worked since and it was the best thing that could have happened to me. Now I’m not working if I wake up with my back in spasm, I stay in bed until it’s settled down. If I need extra sleep or to lie down in the day, I do so. As a result of this, I am happier and healthier which is good for me, good for my husband and good for everyone around me as I’m much less crankier!
Some years after I finished work I noticed my pain starting to spread to other areas in my back– I was referred back to the specialist. I raised the scoliosis – was this the cause? You should never see a blunt consultant – his answer was “well you can’t expect these things to stay the same forever” – was there anything that could be done I asked – no – you just have to put up with it was the response. I must add at this point, this guy was not a scoliosis specialist, just a regular orthopaedic surgeon – SO – take my advice – insist on seeing the right guy!
After couple more years I looked in the mirror and thought – gosh, that’s funny, I know my one shoulder dips a bit but I don’t ever remember dipping that far to the right….
I looked very crooked – like I was bending sideways. It was back to my poor long suffering doctor who referred me to the scoliosis clinic (yay!) – well so much for the if you have any problems come back. It was on the waiting list for me. It turned out to be a very very long wait! But hey, that’s another story…. (I like saying that!)
I haven’t worked since and it was the best thing that could have happened to me. Now I’m not working if I wake up with my back in spasm, I stay in bed until it’s settled down. If I need extra sleep or to lie down in the day, I do so. As a result of this, I am happier and healthier which is good for me, good for my husband and good for everyone around me as I’m much less crankier!
Some years after I finished work I noticed my pain starting to spread to other areas in my back– I was referred back to the specialist. I raised the scoliosis – was this the cause? You should never see a blunt consultant – his answer was “well you can’t expect these things to stay the same forever” – was there anything that could be done I asked – no – you just have to put up with it was the response. I must add at this point, this guy was not a scoliosis specialist, just a regular orthopaedic surgeon – SO – take my advice – insist on seeing the right guy!
After couple more years I looked in the mirror and thought – gosh, that’s funny, I know my one shoulder dips a bit but I don’t ever remember dipping that far to the right….
I looked very crooked – like I was bending sideways. It was back to my poor long suffering doctor who referred me to the scoliosis clinic (yay!) – well so much for the if you have any problems come back. It was on the waiting list for me. It turned out to be a very very long wait! But hey, that’s another story…. (I like saying that!)
Friday, November 18, 2005
The best years of my life?
At the advanced age of 18, I was discharged from the clinic and told never to darken their doors again. Actually, that's not true, they told me to come back if I had any problems (many moons later I was to discover that this offer was rubbish!)
Anyway, as I said before I had no major problems with my back and life was good. Over the next ten years, I went to college, met a great man, got married and got a job that I loved. Everything was going swimmingly and although I always thought there might be the possibility of problems as I got older, I started to think that this would be maybe when I retired.
One day at the age of 28 my back started to hurt when I was in work. It didn't improve - I woke up the next morning and it was still there - a real grinding ache low down in my back. As far as I knew I hadn't done anything odd and I expected it to get better. After a couple of weeks without change it was really getting to me to I went to the doctor for painkillers. They didn't work so he gave me stronger ones and referred me to a specialist. In fact, I paid to see him privately as I was in so much agony that I didn't want to wait the 12 months it would have taken to see someone on the NHS.
He was very blunt. He told me that I had arthritis of the spine caused by years of limping around and that it would only get worse from here. There would be no improvement in my pain and he expected me to be in a wheelchair by the time I was 40! I was devastated (well anyone would be) but was determined to get on with life. It was back to the doctors for some more, stronger painkillers and went back to work.
Incidentally, that pain has never gone away – and we are now 14 years later. Now, I wonder what I will do if it ever goes I am so used to it. It has been joined by many other aches and pains which I may touch on in time but it just grinds away like background noise. Strangely, I don’t find it anywhere near as awful as I did to start with.
Anyway, as I said before I had no major problems with my back and life was good. Over the next ten years, I went to college, met a great man, got married and got a job that I loved. Everything was going swimmingly and although I always thought there might be the possibility of problems as I got older, I started to think that this would be maybe when I retired.
One day at the age of 28 my back started to hurt when I was in work. It didn't improve - I woke up the next morning and it was still there - a real grinding ache low down in my back. As far as I knew I hadn't done anything odd and I expected it to get better. After a couple of weeks without change it was really getting to me to I went to the doctor for painkillers. They didn't work so he gave me stronger ones and referred me to a specialist. In fact, I paid to see him privately as I was in so much agony that I didn't want to wait the 12 months it would have taken to see someone on the NHS.
He was very blunt. He told me that I had arthritis of the spine caused by years of limping around and that it would only get worse from here. There would be no improvement in my pain and he expected me to be in a wheelchair by the time I was 40! I was devastated (well anyone would be) but was determined to get on with life. It was back to the doctors for some more, stronger painkillers and went back to work.
Incidentally, that pain has never gone away – and we are now 14 years later. Now, I wonder what I will do if it ever goes I am so used to it. It has been joined by many other aches and pains which I may touch on in time but it just grinds away like background noise. Strangely, I don’t find it anywhere near as awful as I did to start with.
Monday, November 14, 2005
Something funny...
I was just doing my last entry when something funny struck me. Up to the age of about 18, the only spinal x-rays I had ever seen were my own with my own backwards S curve.
One day I saw someone else x-rays on the telly and wondered what was wrong with their back - did vertebrae really sit like that one on top of another with not a hint of a curve in sight? Apparently yes, they do-so it must be me that's odd!
One day I saw someone else x-rays on the telly and wondered what was wrong with their back - did vertebrae really sit like that one on top of another with not a hint of a curve in sight? Apparently yes, they do-so it must be me that's odd!
Barbaric torture? Not for me!
Back to the whole (long) story…
Whilst I was a teenager and visiting the nice man (and his many students) in the scoliosis clinic, nothing at all was done about my curves. There was much watching, many x-rays and lots of times where I was asked to walk up and down the corridor. They drew on my back with felt tip pens and then asked me to bend over, measured my height every time I went, but never actually did anything else.
Why, you might ask was this? Well, I don’t know for certain – firstly I was too young to care, then I was too embarrassed by being half naked in front of all the students and then I was a surly teenager who wasn’t interested in anything adults said! Actually the half naked thing was something else – they had these ‘bikini’ tops in our clinic – imagine a triangular bandage with the middle point folded over and a thread put though it to tie around your neck. The strings were always broken and they always gaped at the sides – definitely not high fashion !
Anyway, I digress. There were a few things suggested that could be done with me over that period, but they all seemed horrific to me. Firstly they talked about bracing – huge metal and leather contraptions that would only suit the worst kind of fetishist. These were designed to hold your curves whilst growing – but I stopped growing at 12 so that was out the window. At the time I was borderline for surgery – they say with scoliosis that if your curves are less than 40º then they won’t progress once you’ve stopped growing. At 50º they will – but what if you are somewhere in between? Well, they may or may not progress! So was surgery really an option, especially with the complications of spina bifida? There were nasty rumours of 12 months in a plaster cast with 6 months of that in bed in a plaster cast – and horrible risks of paralysis and even death. Eeek! All this at a time when I was just discovering boys, makeup and all the fun stuff in life. Can’t say I was too keen on the idea of surgery!
Well, that was that really. I started to grow up and do all the things your parents wish you wouldn’t. My curves stuck as they were and I got on with my life. Sure, I had a limp and couldn’t walk as fast (or far) as most of my friends but mostly things were great. My back looked funny, but it didn’t hurt – at least not then. But that as they say is another story!
Whilst I was a teenager and visiting the nice man (and his many students) in the scoliosis clinic, nothing at all was done about my curves. There was much watching, many x-rays and lots of times where I was asked to walk up and down the corridor. They drew on my back with felt tip pens and then asked me to bend over, measured my height every time I went, but never actually did anything else.
Why, you might ask was this? Well, I don’t know for certain – firstly I was too young to care, then I was too embarrassed by being half naked in front of all the students and then I was a surly teenager who wasn’t interested in anything adults said! Actually the half naked thing was something else – they had these ‘bikini’ tops in our clinic – imagine a triangular bandage with the middle point folded over and a thread put though it to tie around your neck. The strings were always broken and they always gaped at the sides – definitely not high fashion !
Anyway, I digress. There were a few things suggested that could be done with me over that period, but they all seemed horrific to me. Firstly they talked about bracing – huge metal and leather contraptions that would only suit the worst kind of fetishist. These were designed to hold your curves whilst growing – but I stopped growing at 12 so that was out the window. At the time I was borderline for surgery – they say with scoliosis that if your curves are less than 40º then they won’t progress once you’ve stopped growing. At 50º they will – but what if you are somewhere in between? Well, they may or may not progress! So was surgery really an option, especially with the complications of spina bifida? There were nasty rumours of 12 months in a plaster cast with 6 months of that in bed in a plaster cast – and horrible risks of paralysis and even death. Eeek! All this at a time when I was just discovering boys, makeup and all the fun stuff in life. Can’t say I was too keen on the idea of surgery!
Well, that was that really. I started to grow up and do all the things your parents wish you wouldn’t. My curves stuck as they were and I got on with my life. Sure, I had a limp and couldn’t walk as fast (or far) as most of my friends but mostly things were great. My back looked funny, but it didn’t hurt – at least not then. But that as they say is another story!
Thursday, November 10, 2005
The teenage diaries (well almost...)
And so to the next instalment in my curvature history....
Between the ages of 11 and 12 I grew a lot - well that's what I thought anyway and having sprung from a lofty 5ft 2" mother, I finally reached 4ft 11 ¾". Way hay I thought not far to go now and I will be a magical huge 5 feet exactly! It was then that I realised that my curve had other ideas - it bent this way then that and started to look like a backwards S when viewed from behind. Not that I can see it from behind you understand (not even when I try and turn my head a really long way round*) but that's the way they always take x-rays. Anyway as my scoliotic curves got bigger I got shorter and before I was hardly into my teenage years I was back to being 4ft 10". What a swiz!
I was lucky in some ways, my top curve (thoracic for all you medically minded people out there) was almost the same size as my bottom (lumbar) curve. There was only a teeny difference in angle that just made my shoulders look a bit lopsided and if I stood with most of my weight on one leg a-la super model with one hip stuck out I thought I looked pretty straight. Not too straight you understand, I still wanted to look cool (oops must be a different meaning of the word straight popped in there). Standing like that also meant that if I wore a skirt (eeek, a skirt?) the bottom was level and didn't look like I'd hemmed it myself with my wonky glasses on. Of course I would have hemmed it myself anyway (in the 70's you didn't get that many clothes for short girls on the high street unless they were tiny too - and I'm not!) - but all the same I didn’t want people thinking I'd done a rubbish job!
Sooo, time ticked on and wonder of wonders, at womanly curves of 45º (lumbar) and 40º (thoracic) my curves stopped moving, they stopped getting worse and just stayed there as some kind of medical curiosity.
Of course, I can hear you asking, what were the doctors doing during all of this - why didn't they do anything, or did they just like to watch - well, I suppose that's another story (or at least a continuation of the same) and will just have to wait for my next entry. Don't sigh - I have to have something to keep you coming back...
* Or when I do my best Linda Blair impression, or when I do that thing with two parallel mirrors. Well, I guess you get the picture - at no point have I ever seen, well, my behind, from behind (or my back from the back for that matter)!
Between the ages of 11 and 12 I grew a lot - well that's what I thought anyway and having sprung from a lofty 5ft 2" mother, I finally reached 4ft 11 ¾". Way hay I thought not far to go now and I will be a magical huge 5 feet exactly! It was then that I realised that my curve had other ideas - it bent this way then that and started to look like a backwards S when viewed from behind. Not that I can see it from behind you understand (not even when I try and turn my head a really long way round*) but that's the way they always take x-rays. Anyway as my scoliotic curves got bigger I got shorter and before I was hardly into my teenage years I was back to being 4ft 10". What a swiz!
I was lucky in some ways, my top curve (thoracic for all you medically minded people out there) was almost the same size as my bottom (lumbar) curve. There was only a teeny difference in angle that just made my shoulders look a bit lopsided and if I stood with most of my weight on one leg a-la super model with one hip stuck out I thought I looked pretty straight. Not too straight you understand, I still wanted to look cool (oops must be a different meaning of the word straight popped in there). Standing like that also meant that if I wore a skirt (eeek, a skirt?) the bottom was level and didn't look like I'd hemmed it myself with my wonky glasses on. Of course I would have hemmed it myself anyway (in the 70's you didn't get that many clothes for short girls on the high street unless they were tiny too - and I'm not!) - but all the same I didn’t want people thinking I'd done a rubbish job!
Sooo, time ticked on and wonder of wonders, at womanly curves of 45º (lumbar) and 40º (thoracic) my curves stopped moving, they stopped getting worse and just stayed there as some kind of medical curiosity.
Of course, I can hear you asking, what were the doctors doing during all of this - why didn't they do anything, or did they just like to watch - well, I suppose that's another story (or at least a continuation of the same) and will just have to wait for my next entry. Don't sigh - I have to have something to keep you coming back...
* Or when I do my best Linda Blair impression, or when I do that thing with two parallel mirrors. Well, I guess you get the picture - at no point have I ever seen, well, my behind, from behind (or my back from the back for that matter)!
Wednesday, November 09, 2005
A short history lesson....
Most people have some kind of history of their scoliosis - how it was discovered and how it progressed - and I am no different in that respect. The way in which I am differrent is that we are fairly sure why I have it. Most people have what is called idiopathic scoliosis - that means they don't know how they got it but me, well, I was born with spina bifida and that put a few things out of whack!
Back in the Dark Ages when I was born, they didn't run down to the operating theatre with new born babies with spina bifida almost before their mothers had time to see them. Oh no - back in my day (the 60's) they waited until they thought baby was strong enough to withstand the op. Can you imagine - there I was with spina bifida myelomeningocele (you'll have to look that up if you are interested) where there is a lump on baby's back which contains all kinds of nerves and spinal cord fluid. Eeek! My poor parents had to be careful not to touch it, not to get it wet and all kinds of other stuff - and this went on for 5 months until I was taken into hospital to be operated on. The operation was a huge success (my spina bifida is very high in my back and that normally means paralysis) but miraculously after the op I could move my legs. It was a great relief to all concerned. A bit odd for me as there was nerve damage and although I could move my legs and learned too walk, for many years I could feel nothing at all in terms of skin sensation. It just feels a bit like when the dentist gives you one of those injections - you can feel the pressure inside but nothing on the surface. Anyway, time ticked on and I got some patches on my legs and feet that I could feel and some that I couldn't - that's just the way it is now.
All this excitement of the girl who could walk but couldn't feel and they loved me in the hospital - I was a regular teaching tool for all those students who came round peering at me in their white coats with their shiny stethoscopes trying to guess what was wrong with me. I went back often for x-rays and poking and prodding and when I was about 11 they noticed that my spine had started to curve. It was the beginning of my scoliosis and I was referred to a new clinic. This meant more students and yet more x-rays (it's a wonder I don't glow green!) and they kept a close eye on it for the next few years.
Here endeth the history lesson of "in the beginning there were the early years". The next exciting instalment will contain the spotty teenage diaries...
Back in the Dark Ages when I was born, they didn't run down to the operating theatre with new born babies with spina bifida almost before their mothers had time to see them. Oh no - back in my day (the 60's) they waited until they thought baby was strong enough to withstand the op. Can you imagine - there I was with spina bifida myelomeningocele (you'll have to look that up if you are interested) where there is a lump on baby's back which contains all kinds of nerves and spinal cord fluid. Eeek! My poor parents had to be careful not to touch it, not to get it wet and all kinds of other stuff - and this went on for 5 months until I was taken into hospital to be operated on. The operation was a huge success (my spina bifida is very high in my back and that normally means paralysis) but miraculously after the op I could move my legs. It was a great relief to all concerned. A bit odd for me as there was nerve damage and although I could move my legs and learned too walk, for many years I could feel nothing at all in terms of skin sensation. It just feels a bit like when the dentist gives you one of those injections - you can feel the pressure inside but nothing on the surface. Anyway, time ticked on and I got some patches on my legs and feet that I could feel and some that I couldn't - that's just the way it is now.
All this excitement of the girl who could walk but couldn't feel and they loved me in the hospital - I was a regular teaching tool for all those students who came round peering at me in their white coats with their shiny stethoscopes trying to guess what was wrong with me. I went back often for x-rays and poking and prodding and when I was about 11 they noticed that my spine had started to curve. It was the beginning of my scoliosis and I was referred to a new clinic. This meant more students and yet more x-rays (it's a wonder I don't glow green!) and they kept a close eye on it for the next few years.
Here endeth the history lesson of "in the beginning there were the early years". The next exciting instalment will contain the spotty teenage diaries...
Friday, November 04, 2005
To the reason I'm here.....
I am crooked - warped if you will and I wanted to call myself twisted sister here, but I figure that name has already been taken....
I have two major curves in my spine (about 60 degrees if you are interested) and have avidly read other people's blogs on their spines and surgery as it has happened. It's been really nice for me to know that I'm not the only person in the world going through this and I hope that in creating my own blog I can pass on some of my hopes and fears and help someone else.
It's scary waiting for major surgery whatever it is for and messing around with your spine is pretty frightening - all that wondering if you're doing the right thing or not...
So, I start here - in time I'll pass on some more information and then get right down to slicing and dicing when it happens. I don't intend putting much else in the blog apart from stuff about my scoliosis - how it happened and what effect its had on me so I guess it won't be too interesting unless you have (or know someone who has) the same condition.
Well, everyone has to start somewhere and this is my start. I shall log back on soon...
I have two major curves in my spine (about 60 degrees if you are interested) and have avidly read other people's blogs on their spines and surgery as it has happened. It's been really nice for me to know that I'm not the only person in the world going through this and I hope that in creating my own blog I can pass on some of my hopes and fears and help someone else.
It's scary waiting for major surgery whatever it is for and messing around with your spine is pretty frightening - all that wondering if you're doing the right thing or not...
So, I start here - in time I'll pass on some more information and then get right down to slicing and dicing when it happens. I don't intend putting much else in the blog apart from stuff about my scoliosis - how it happened and what effect its had on me so I guess it won't be too interesting unless you have (or know someone who has) the same condition.
Well, everyone has to start somewhere and this is my start. I shall log back on soon...
Tuesday, November 01, 2005
Testing testing
Well, if I'm gonna have a blog I may as well write something just to get it started....
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