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!

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…

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!

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!)

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.

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!

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!

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)!

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...

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...

Testing testing

Well, if I'm gonna have a blog I may as well write something just to get it started....

Exciting this - isn't it!