For those of you who are wondering, I am doing better than I was yesterday. Today I am more stiff and sore than really hurting. I do have to be careful tho' as today I am in the situation where my pain is lurking waiting to pounce on me. I'm sure all of you out there who have ever suffered with chronic pain will be able to relate to this. It lurks around the edges saying things like – you feel fine, just do a bit more, it won’t hurt, it’ll be easy and stuff like that 
– when your heart really knows that if you even think about going there and doing that you will pay big time for it. So, I have lurking pain – it’s not caught me yet and I am being good so it doesn’t! 
Ah, now to the statcounter. Right early on in setting up this blog, I decided to set up a counter to find out how many visitors I had to the site. I have been amazed how many people have visited and then even returned!! The counter that I use is supplied by a company who also give me really basic statistics of the last 100 visitors – they’ll give you more than 100, but then you have to pay for it and I’m just too cheapskate for that! The stats are so basic that mostly they can’t tell me anything but they can at least tell me what country people come from and I’ve found that fascinating.
I know that most of my visitors are from the USA – Hi guys and the UK, Hello folks but I also have regular vistors from Finland (Hei), Spain (Hola), Kuwait (هتاف للترحيب), Philippines (kumusta; hoy; helo) and someone who drops in just about everyday from Unknown (sorry, I don’t know what language you speak in Unknown). Anyway, I just thought it was interesting and wanted to say hello…..I just hope that Babelfish hasn’t made me say anything insulting now….
I am a bad person and have done the thing that I promised everyone that I wouldn’t – I have overdone it!
Buoyed up with the enthusiasm of going out for dinner and going upstairs 4 times in one day just because there were things upstairs I wanted to do, I thought I was ‘just about better’. This was a big mistake as it then led me to think I could sit at the PC for 2 hours solid (which I couldn’t do before the op let alone since) and then instead of taking a rest I went to do the washing up. I figured that since it was only 2 cat bowls and 2 mugs it would be simple enough. I must stress at this point that the mugs were nothing to do with the cats (although I wouldn’t put it past the mad one to drink tea) – they were mine and hubbies (umm and not the cat bowls - oh heck, you know what I mean)! Anyway, so my day went on and because I felt OK(ish) I did the same the next day. Today I feel like %&*$ and I am going to be a good girl and rest………yes really!
Oh yes, finally, I must say, nay insist, on one thing before I go. Please will everyone wish my very good friend ‘A’ a "Get Well Soon" message as she is pretty poorly at the moment and probably feels like %&*$ too! Bless…
Oh gosh, is it really 11 weeks since I had the surgery – doesn’t time fly when you’re having fun?! I’m doing well, keeping busy and happy and feel much clearer headed since I came off the morphine based drugs. My walking (with 2 sticks) has now speeded up to not too much slower than I used to be and my pain levels are much less. I am still taking lots of painkillers but will cut them down soon I am sure. Oh yes and ‘I Am Not Fed Up’ (except maybe with people asking me if I am fed up yet!).
Before I went into hospital, I made a long list of things that I was going to do during recovery. I had a shelf full of books to read and DVD’s to watch. I have jigsaws and embroidery to do. I have sewing to do and loads of stuff on the PC. I want to transfer my LP’s to CD. I want to backup the PC and reinstall nice clean copies of all the software. I want to update my blog and e-mail my friends. I also do scrap booking and card making and want to sort out all my old photo albums. Now, I have actually done some of this stuff, but with a list like this, do you think I’ve managed to get all that done yet? I ain’t wonderwoman you know! 
Anyway, last night we went out with bruv and sis in law for a meal. I sat at a table for a whole evening and didn’t complain once. I even had ALCOHOL in the form of an liquer coffee. It was great – isn’t it nice to take such great pleasure in such simple things…..
This is a serious post, prompted by an e-mail that I received from a lovely lady in America. In fact the whole story of the e-mail itself is quite amazing as I received the e-mail through a mutual friend (on one of the forums) as this lady has the same 3 medical conditions as myself – spina bifida, scoliosis and diastematomyelia (split spinal cord). When I worked out the odds of that happening (not including the actual ‘meeting’ over the Internet), it worked out that the chances of us both having the combination of those same (rare) conditions were something like 1 in 20 million*. Astounding!
Anyway, she is thinking about surgery at the moment and we discussed the subject of de-tethering. Now just in case you don’t feel like wading through the archives – tethering is where your spinal cord gets ‘stuck’ to the tissues or bones of your spine. The cord is meant to hang freely within the bones of your spine so if it doesn’t, there can be all sorts of problems and symptoms such as back pain, scoliosis, weakness, bladder problems and loss of sensation have all been reported. In the case of children, surgery is nearly always offered as a low risk option with a really good outcome and therefore pretty much always worth doing. It is more complicated for adults, especially (but not exclusively) those with other considerations, such as spina bifida and diastematomyelia and of course, any risks rise with age. So, what do you do, if your tethering was not detected before adulthood? It makes the decision very difficult, that’s what. My orthopaedic consultant referred me to a neurologist and in my case his recommendation was to leave well alone. He considered it to be more trouble to do than it might be worth, particularly with the increased risks and I was inclined to agree with him. However, if I were younger and didn’t have any other complications, I would definitely have considered it as a worthwhile option. After all, a tethered cord is another thing that can affect your quality of life as you get older.
So, if you are in this situation what do you do – well, I guess you need to consider what problems/symptoms you have that can be put down to the tethered cord (as opposed to anything else) and then ask yourself if you are used to them and know how to deal with them, and what the likelihood of them getting worse is. Any operation at all carries a risk, especially one on your spine and once you are an adult the improvements are not as big as when you are a child (sadly nerve damage isn’t normally inclined to repair itself once the damage has already been done). The best advice is to see a neurosurgeon, but think carefully – this surgery isn’t necessarily going to be an instant cure to all your problems – all you can do is keep your fingers crossed!
*Actually, it’s a fib – hubby actually did the maths – I needed a calculator but smarty pants did it in his head!
Oh yes, and on the links page you will find links to pages about this subject, including a great personal story.
I do have a recent bit of info for people – I was recently pointed at another blog out there with a scoliosis theme. Called Scoliosis News, it is a Compilation of news reports related to scoliosis. I haven’t had chance to read it all, but there may be something of interest to you there – the site contains links to most of the news articles listed so there seems to be tons of information via them.
You can find it at:
http://scoliosisnews.blogspot.com/
You may wonder, why the title, since it doesn’t seem to relate to Scoliosis news in any way, it’s just that I have decided that my smiley use is getting excessive and something needs to be done. Here goes…..goodbye cruel world…….
I am now 10 weeks post op. Wow – so where did all the time go? Astoundingly, I am still not really bored – much to the amazement of everyone it seems. I suppose, although I am still in the realms of doing a bit more each day, I still take a fair amount of time out just resting, reading or watching the box – in fact anything that doesn’t require stretching or bending. Ummm that would be most things then! I am now finding that I can sit forward unsupported pretty well (although it’s tiring) and it’s opening up a whole new world – using a knife and fork for example and sitting at a table!!
In fact, this brings me onto a whole new subject it’s that of firsts…you see, I just realised that from now on, I am going to have a whole new bunch of firsts. I already started with a night out down the pub (OK OK, it was just a couple of hours and I stuck to fruit juice) but all ways round, it’s starting to get pretty exciting. There are loads of new experiences that I am looking forward to. I know that you are all going to think that I am totally loopy, but I will be able to sit up straight when I do stuff now and it’s going to make a difference.
Mostly I think I am looking forward to the cinema as over the last couple of years it has been increasingly painful to watch a film (and I love films). It’s partly been that it’s been painful to sit for so long, but also that I leant over so far that however I sat a seat arm jabbed into me – I would spend 2 hours or so squirming next to hubby and worrying him. It’s just a shame that there appears to be nothing on but grot right at the moment. Mission Impossible 3 is about to open but I don’t know where you would categorise that on a scale of rubbish to fab. There’s Pink Panther (umm didn’t anyone tell them Peter Sellers is dead?), Alien Autopsy (with those really irritating little squirts), some romantic comedies (which are not really my thing) and a whole bunch of horror movies. Some of them I quite like (suspense rather than gory) but want to watch them at home so I can leave the room or hide behind the sofa during the really scary bits (hee hee!). I have to say that “Firewall” looks pretty good but on our home grown scale of cinema, rental, TV and aaargh (ignore), looks like much more of a TV or rental movie. Cinema is really reserved for BIG special effects films (King Kong was the last thing we saw*) – partly cos the local multiplex is pretty expensive, but mostly cos hubby would get really fat if he ate that much popcorn** every week!
*King Kong was a mostly fun film but overlong in places – some sections got distinctly silly and used up all your suspension of disbelief points*** available – it even borrowed some from the next thing you would be likely to see (or even several next things!). Effects were good tho’ and wouldn’t look the same on a 14” portable…
**I know, popcorn is the less fattening snack – but not with that much butter on it…..
*** BTW, full marks to anyone who knows about real "suspension of disbelief points" (hubby, you are not allowed to claim the points - I know you know!)
Oh yes, and just in case you are interested – I like these films:
(among my favourites) 
(both serious science of course) 
(and most other fairytales for adults) 
(and pretty much any sci fi) 
(ditto)
I also like courtroom dramas, thrillers, suspense, disaster movies and shoot ‘em ups along with a whole bunch of other stuff. Did I mention that I like films?
I have had news from my consultant - he doesn't care how good I feel, he's only interested in how my bones are fusing. The latest news is no driving or exercise (swimming etc) until after my next x-ray. That won't be until June! Not fair I say - I was hoping to get behind the wheel in May. I do love my car and driving and I don't make a great passenger. It's not that I'm a bad passenger really, I just don't like the feeling of not being in control of all that metal and growling engine 
(drool) 
.
I have to constantly warn hubby about other drivers, red lights, green lights, dogs, old ladies and women who stick pushchairs out into the road. Why do they do that? All these women who stand on the pavement (sidewalk) and stick the buggy out into the street - there must be some kind of a madness that infects young mothers I guess! (My friends who are currently pregnant take note!). Anyway, poor hubby has a lot to put up with, even when I try really hard to behave and be the perfect (and quiet) passenger. I don't do quiet passenger really well, but honestly I do try to be a sweet little angel.... 
Oh, there you go again - thinking the worst of me! Actually it was a woman I met (in fact 2 women), when I was out. Yes I was out, fulfilling a long held desire to go out somewhere nice and have great coffee and even greater cake - long held that is since I had the op. I have to say at this point that the cake was carrot and yes it was delicious!Anyway, back to the meeting...
...it was great to bump into friends while out - just one of those random meetings that you have. I haven't seen them since before the op either so it was even nicer. The odd thing was that I was using my wheelchair. The fact that I was using it wasn't odd at all, I couldn't have walked far enough to get my coffee and cake after all; it was just odd because these friends (despite me having had the chair for ages) had never seen me in it before. It wasn't mentioned, and I don't think they even really noticed (after all, I am so short, you can't tell if I'm sitting or standing most of the time!), but it struck me as weird afterwards; I don't mean weird that it wasn't mentioned, just weird that it was a first. A very, very good friend of mine asked to me some time ago how I would feel if people I knew saw me using my wheelchair when they haven’t before (mostly because I stubbornly refuse to use it!). I thought for some time but couldn't answer, but I did think that I wouldn’t feel right. Well, in fact, it was fine and I felt just like me (surprise surprise!). I think since the operation I have developed a new relationship with the wheelchair and have decided that it’s the right tool to be used in certain circumstances – a bit like using a hammer to hit in a nail instead of using a shoe! 
I'm hardly going to use it to go down the pub but to help me go round town without pain and fast enough to get back to the car before the pay and display ticket runs out, well, it really has its place.All this is a long way from going out for coffee and cake and meeting friends by chance, but despite the fact that I flaked out, tired and getting sore by the time I finally got home, it was all really nice. D'you know, I think I may be getting better.
I have so far resisted posting anything about back pain, even though I know that when I was a pre-opper myself it was one of my biggest concerns when reading other people’s blogs. As someone who has suffered from constant daily back pain for more years than I care to remember, I really hoped that this operation would help. My consultants view on all this is somewhat different – at the clinic I was told (repeatedly) before the operation that they only wanted two outcomes – one – to get my head over my middle and - two – to stop the progression of my curve. Whenever I mentioned the pain, I was told that that was not the purpose of the operation and that any improvement in pain was to be treated as a bonus (even though they actually use pain as one of the indicators in whether to operate or not!).
Well, here I am 9 weeks on and they have achieved their goals – but have I had my bonus? Well, I know that you are all desperate to know, but it really is still too early to tell. I know that the crunched up pain in my right side has gone, but I still have the pain up by my left shoulder blade (probably because they didn’t do my top curve yet). The pain in my lower back, well, I just can’t tell – I don’t have my old pain, but I have a different type of pain in a similar place and that’s in addition to the pain in my side where my rib used to be. Of course if I was a pessimistic person, I might be saying that I have swapped one pain for another but since I am optimistic, I just think that I still have post-operative pain. All this means that I can’t tell you anything concrete yet – sorry!
Some days ago I mentioned that Kat had started using stronger painkillers and at the same time, more smilies in her blog and I idly wondered if there was a link*. Well, yesterday was the first day on my weaker painkillers and if anything my smilie use went up. I’m now thinking that it’s the change of drugs that does it and it will all settle down again in a few days time…….*See, still wondering, even if I am less warped...
I had physio yesterday and it went much better than the previous session. It is almost as if my physio has had a change of heart for the better – loosely translated this means she has come round to my way of thinking – which, of course, is vital if I am to like her! 
OJ!Seriously. She has had a bit of a rethink in the past week and has decided to let me get on with the walking myself. We are both happy this way as I can devote much more time to practising shuffling around in a way that suits me – I have taken onboard her suggestion about using two sticks rather than one crutch but still don’t see a way to carry cups of coffee. Methinks I need a butler – any offers?She mentioned that she thought I was unbalanced 
–
no, not like that (although of course I don’t know what she secretly thinks of me) – she meant that I have poor balance. I’m sure that no-one who knows me has ever noticed……
Anyway, she has given me some balance exercises which I think may well be useful. They certainly can’t do any harm; so the answer is no – I haven’t (yet) sacked the physiotherapist!
Woohoo! I am back in jeans. I have no idea if I will be in them again tomorrow, but I am today and that’s what counts. I do feel distinctly more normal – now if only it would all completely stop hurting we really would be in business….
I’m thinking though that I may have to rush out (hee hee, like I’d rush anywhere before the op, let alone now!) – to buy new clothes. You may think that this is because I am straighter and wish to fill my wardrobe full of stripes, but it’s not true, you see in fact my wardrobe is already full of stripes (never knew they were supposed to go horizontal tho’!). Anyway, the fact is, this is for jeans, you see I am suddenly longer from my ummm, well there, to my waistband. Today I am wearing a favourite pair of low rise jeans that I have always worn on waist as that’s where they fitted and today I discover they are sitting exactly where they are supposed to. Now this makes me a bit worried as my favourite jeans are M&S ‘on waist’. Now stop right there, remove all images of elasticated waistbands and grannies, M&S do some great jeans and more to the point they do them with very short leg lengths and I have very short legs. Up until now it was a match made in heaven but I have stood there in the changing room listening to all those women complaining about the fit and how they dig in up where they’re not supposed to. I fear I will soon be one of those women. If I am now longer between the floor and my waist (even if it’s really between ummm, there and my waist) then my ‘perfect fit’ isn’t going to be perfect, is it?
Now do you think this sounds like a good excuse for some serious clothes shopping? Answers on a credit card please……
Life just seems to consist of more of the same at the moment. A couple of good days followed by a not so good one where I rest up and then we’re back to improving again. I now seem to have reached the point where I have more good days than bad now so I’m happy with the rate of progress. My walking is improving gradually and I’m doing lots of (self imposed) exercises which seem to help with my movement. Getting some of the feeling back in the top of my leg has been a real help too, although the front of my thigh is still as dead as a block of wood (I figure that’s quite apt since I have legs like tree trunks!).
Re the medical profession, I saw my doctor on Monday and he is happy for me to try reducing my painkillers. He has prescribed me something a little less ‘interesting’ and I shall give them a go next week – I was told on no account to start on the new stuff over a weekend, just in case….just in case what, I'm not certain, but I am happy to follow advice (Ok, you can stop laughing and get up off the floor now!)
I still have a physio (just) but I think that we have different agendas – she would like to get me walking normally, completely overlooking the fact that I have never done that in my whole life. I see an interesting clash here.
Leaving all this aside, I thought I’d pass on another of those wonderful gems for all the pre-oppers out there. You see I thought I’d be doing loads of stuff at this point and discover that I am still restricted in the bending and stretching department so…
…think about what you might like to do when out of hospital and then make sure that it is reachable. If you want to watch those odd 100 dvd’s that have sat on the shelf gathering dust, then make sure you can reach the player, ‘cos if it’s near the floor, you’ll need someone to load it for you. Just get everything you own which is either high or low out on the worktops – OK OK, it’s true, your house will look like a jumble sale but these things need to be done. You have been warned!
I came across this on one of the forums recently and I thought it was so nice that I wanted to pass it on.
"I always find pre/post-op scoli x-rays strangely beautiful because they represent the journeys we have all taken, and the strength we have gained along the way."
Well, here it is – 8 weeks post op. It seems amazing that it has been so long and the year is flying past me at an alarming rate. There’s so much stuff I want to do, getting together with friends and getting back to filling my life with all the stuff I used to that I am suddenly getting stressed out by the fact than summer is almost here. Well, of course it isn’t really, but if the next 8 weeks passes in the same blur as the last 8, it soon will be!
Anyway, at 8 weeks how am I? Nearly human seems to sum it all up. There are times (especially just after I wake up and haven’t moved much) when I actually feel like I am completely back to normal – then I get up and the illusion is totally shattered! Seriously, even after I am up, I can move much more freely and am in much less pain. Of course I’m still on the pain meds so it may just be that as my pain levels have gone down, the tablets are working better but still….
I am still slobbing out in the jogging bottoms (umm I think you’d call them track pants in the US) but I can see a time shortly when I will get back into my jeans – yay, denim! Obviously I won’t be painting on the really skin tight ones(!), but I will feel much more normal to be wearing ‘proper’ clothes. Only thing is, I think I may have to buy some news jeans because of my ‘growth spurt’. I know my legs aren’t longer, but my waist is higher so all those ‘on waist’ jeans are going to be mounted a bit higher and unlike in Victorian times, showing a bit of ankle is not exactly what I want to be doing….
Now, I am no expert on calculating Cobb angles, but I’ve been curious about what my ‘vital statistics’ are and since a tape measure isn’t much help, I have been drawing lots of lines all over the photos of my x-rays and dusting off my old school protractor.
Of course, it helps in knowing what my 2003 x-ray actually was, so once I had managed to measure that to within a degree or so of what the surgeon had calculated I thought I would have a go on my pre-op and post op x rays. The results came out like this:- October 2003
- Thoracic curve 55 º Lumbar curve 62 º
- February 2006 - Pre-op
- Thoracic curve 60 º Lumbar curve 73 º
- March 2006 Post Op
- Thoracic curve 30 º Lumbar curve 33 º
Oh yes, and back when I was 18 my curves were:
- Thoracic curve 43º(?*) Lumbar curve 45 º
Now, even if we assume that my measurements are a little iffy and allow for a 10 or even 20% deviation in my figures, that’s still a pretty nasty progression rate and a pretty good correction. Clever bods these surgeons!
*We are not entirely certain of the thoracic angle but know that there was only a tiny difference between the two curves.
I read that Kat has just got stronger painkillers and has suddenly started using a lot of smilies in her posts. Since I've been on stronger pain meds than her all along, I'm wondering if there is a scientific link and if maybe I should do some research, or whether it's just that reading Bill Bryson's "A Short History of Nearly Everything" is going to my head. 
I have had several suggestions about making a list of the things that I couldn’t do over the past few weeks and a few other people offering the advice to concentrate on things you can do. So….with this in mind, here’s my list of things I couldn’t do, accompanied by my list of ways around the problems that I found. Now I guess these won’t work for everyone, but you never know….
- It’s hard to put on knickers and trousers (pants). Well, this is a bit of a tricky one but I managed to get round it with the use of my helping hand. It involves a ‘game’ which from hereon in will be known as ‘fishing for feet’. What happens is this – you dangle your feet off the edge of the bed and then grab hold of your right knicker leg with your helping hand and dangle that over the side of the bed too. Sooner or later your fishing will result in the catching of your left foot. Pull upwards until said knickers are firmly stretched around calf and then put right leg through other hole. Pull up to knee level with helping hand. Repeat with trousers – stand and pull both up to correct position. Easy!* It is worth remembering at this point that my left foot is not very clever and is apt to dangle around frustratingly close to where it should be without ever quite aiming in quite the right direction. Oh what fun I have of a morning…. (Please note, if you have fully directional/functional feet this game might be a bit easier!)
- It’s almost impossible to put on socks. This again is a really good fun game which involves fishing for feet. Thankfully hubby is at work when I attempt it as I think I couldn’t cope with his inevitable merriment if he were to watch me. In fact, I am certain if anyone were to watch the process, I would end up inserting my helping hand in places it was never intended to go (it is for this reason that I don’t open the curtains until after I am dressed just in case anyone is out there in the allotments with a pair of binoculars!). Anyway, socks are a time consuming affair which involves holding opening of sock with helping hand, managing to get sock over big toe – stretch sideways to get over other toes and oops – sock flies off (usually across the room). Stop, curse, retrieve sock and try again! Once sock is mostly on foot (with heel pointing upwards probably) then is the time to just live with it. I can rearrange my right one by lifting up my foot towards my bum, but then I can’t see what I am doing (no twisting) so it really is a hit and miss thing…
- I couldn’t wash my hair easily before I was able to shower. How do you do this over a sink without twisting or bending? Umm well, you mostly get a lot of water over the floor. With the right type of sink and a stool or chair that will enable you to sit under the basin you can stop making too much mess by just tipping your head/neck forwards and using a jug for the water. It’s the best I can suggest I’m sorry – unless you have a pal who like to mop up after you….
- Showering is a 2 person job – OK OK I know that this is usually fun, but not when you just need the other person to reach the shower controls and get you a towel as well as making sure you don’t go a*se over t*t whilst trying to get in and out of the bath!
- I don’t want to mention this, but it’s not easy to keep your nether regions wiped. Funnily it’s easier with one hand than the other (and this may not be the way you’re used to) I guess for me as I have orangutan length arms it’s a bit easier than for some and once out of hospital I coped OK. When in hospital you just have to accept that some things in life aren’t dignified and you need that kind of help. Apart from that – well, swab on a stick anyone?
- I couldn’t stand for long – not even long enough for the kettle to boil – so we put a stool in the kitchen for me to sit down on while I waited. That was a good and simple idea.
- I can’t stretch up (or down, or across or anywhere!)– so bugger it – if it’s on a high shelf I leave it there!
- I can’t do anything at ground level at all – I drag the post in from the front door under one crutch and once in the living room use my helping hand to pick it all up. The cats think this is a great game and run around the lounge chasing the letters. It can take ages to collect it all as I need to sit down and recover often. In such small ways the day can pass really quickly – so “bored?” - heck no, no time!
- My sofa was too low to sit on. Actually that’s not true it’s just too low to get off – however I have discovered that if I boost myself onto a cushion and from there boost myself onto 2 cushions I am high enough to stand. Odd, but true!
Ah well, I think this list is too long now so I’ll stop!
*My good buddy Kat over in the good ole US of A has found another way round this one which is (in her own words: “I did make pant pull on thingies using office paper clips (big sturdy clips) and string. You clip them to your undies and pants, lower them with the strings down to your feet, slide your feet in and then pull the strings up until you can grab them” True genius there Kat!
