A walk in the park!

Today I went to the park with my brother and we went to the cafe. This was a big deal to me, since I had set it as one of my targets to achieve before Christmas but didn't really think it would be possible. On Tuesday it will be 8 weeks since I had my surgery (and Christmas eve too....which is rather more exciting!). My brother rather gently reminded me that I hadn't actually posted any updates for a while and so I took the gentle rebuke and here I am, blogging again.

So...where am I? Well, you're wrong, regarding the cafe, I got there and back again (rather like Bilbo Baggins) and I'm now in my comfy chair, which is pretty much where I've been for the last 3 hours. Going out is tough on a girl you know. Actually, I don't think it would be quite as bad if I didn't use sticks ironically, as its my thoracic fusion which is protesting the most - probably due to the 10 extra screws that are in there ...and yes, no typo, I said 10 and I meant it!

I saw my surgeon for a check up recently and he told me that my bottom joint was completely degenerated - apparently something of a shock to him as he hadn't realised how bad it was before! There were 2 reasons to this:
1. The scan didn't look quite that bad ...and
2. I wasn't complaining enough about the pain..

So, that was the bottom, and then there was the top. Again, he encountered a bit more than he expected since my 'failed bone graft' that was spotted about 2 years ago, apparently was a graft that had never taken in the first place. I have been wandering around quite happily since 2006 with the only thing connecting the top and bottom of my back being the end of a rod and a single screw. I think it was for this reason he whacked in another 2 rods at the top, to be as sturdy as possible. He put 2 more in at the bottom as well to give as much stability to the joint as possible. He reminded me that I have had 2 lots of major spinal surgery rolled into one, since normally he would not do this as a single operation and I really should take it easy for another 6 weeks. I reminded him that I was impatient and wanted to do stuff...we reached a compromise and I can do some stuff but not much. Limits include lifting stuff but no more that 20lb (by the time I next see him at the end of January) and not twisting under any circumstances. Ever since I had my op in 2006 twisting has involved turning my head and reaching backwards with my arms, but I didn't realise that I did have a little twist left.....but I don't now!

Some good news was that because my bone graft hadn't taken, he used the opportunity to straighten out a little of my curve at the top and try and get good saggital balance at the bottom. Amazingly, he succeeded so well, that for the first time since I was about 14 years old, my weight distribution is roughly equal through both legs...53%/47% according to the Wii fit!

Little bits of other news...I'm off all the high powered pain meds and managing pain with small amounts of codeine and paracetamol (Tylenol for those across the pond!) - probably (definitely) smaller amounts than pre operation - I know I'm not very active at the moment, so maybe that's why, but its rather encouraging. Day by day I do a bit more and today I had my walk in the park...how great is that?!

Oh....so its an allergy then.....

Some time ago, while in hospital, I was given tramadol and within about 5 minutes of taking it I had been sick and apparently looked about as grey as a grey thing can get. Within 10 minutes my blood pressure started to drop like a stone and it went from something like 119/72 to 60/40 and kept falling. People were worried..... They gave me IV fluids and later several units of blood because my blood count also fell through the floor. They didn't give me any more tramadol and told me I was 'sensitive' to tramadol and should avoid it.

This recent hospital visit, I spoke to the anaesthetist before my surgery and told him I was allergic to penicillin and sensitive to tramadol. He asked me what happened if I took it and I told him what I've just told you. "Hmmm," he said, "tell you what, I'll just try you on a tiny bit and we'll see what happens" Now, I'm not so sure that I really wanted to be the subject of his experimentation and don't think I look particularly rat like, but I nodded sagely and thought 'well, he's the expert!'

So...he tried me on a 'tiny bit', which I'm sure is a very technical medical term. Guess what? Good news, I wasn't sick (although they did give me an anti sickness pill too, so I'm not sure that counts), but my blood pressure stubbornly fell to around 60/40 again (albeit a bit slower) and I ended up needing 2 units of blood too.

Doctor came round later and studied my notes... Conclusion? I am apparently officially allergic to tramadol...

...I'm still not sure if that was what the experiment was supposed to prove, or if the anaesthetist just wanted to tinker with drugs balance if things weren't 100% easy just to stop him getting bored.....!

Is it just 2 weeks?

2 weeks ago today, I was lying in a hospital bed, attached to all kinds of machines, quietly beeping and delivering drugs and oxygen. After my surgery, I had not gone to intensive care and rather than moving me into the high dependency unit as expected, they moved some of the machines, and a nurse, into my own room. I guess it was a measure of just how well I was doing at that stage really, but in my drugged up, press the happy button (PCA pump) mind, I didn't realise it. The nurses came in to roll me every few hours and encouraged me to breathe deeply, since my scoliosis had compromised my lung function in the past and I didn't need to get any infection, thank you very much!

I had actually spent about 6 weeks properly preparing for my surgery. I had been to the gym to get stronger through my arms and core, I had taken a months worth of vitamins and iron, I had been drinking 'good bacteria' for my tummy and I had been mentally preparing myself. In the early days when your blood pressure is low (and boy, was mine low!), and everything seems to be just happening to you rather than you interacting with the world, you don't know if your preparation has been a success or not. Its now, that I am feeling it though. I know I feel stronger than I have any right to and my recovery progress is going well. OK, so it takes me from 7:30am to about 10:30 to have breakfast, get dressed & get to the lounge and I still need an afternoon lie down, but seriously, 2 weeks? You'd expect it to be worse, wouldn't you?

Home James....

Well, I'm home....

I managed to make it home in 10 days, which wasn't bad considering how the first 6 of them went (see my earlier post, which I wrote but didn't publish at the time!). How am I? Well, I'm doing really well I think, although my natural impatience is wondering why I'm not better already and my sensible, pragmatic side is telling me that I've had major spinal surgery and I can't expect to be running any marathons any time soon!

Regarding the surgery, my consultant told me beforehand that he was going to put a cage etc in the bottom, but at the top of my original fusion, where the bone graft had failed, he was going to wait until he was in there before he decided what he would do with me. He actually said to me that it might only be 2 screws and a bit of bone graft, so because I am naturally optimistic, I thought that's just about how it would go. Yesterday I saw my xrays.....and.....um.....its not just 2 screws.... To support my failed bone graft I now have 2 extra metal rods and 10 - yes 10 screws fixing them in place on either side of my spine. My fusion extends 2-3 levels above where the original one finished and looks amazing. My original fusion always looked a bit 'wobbly' where they stopped in a hurry last time and you could see a 'lever' point around which I have been trying to bend for the past few years. Its what has added to my pain levels. That point has been fixed and smoothed out (as much as metal can smooth anything out) - it really is astounding what he has achieved. At the bottom I have 4 new screws too - taking my total from my original 8 (yes, that's all there were) to 22! The incisions on my back run fairly much from the level of my armpit to the base of my spine, with a small gap in the middle where he didn't want to cut through a bunch of scar tissue that I have there. I also had 17 staples in the incision in my tummy used for the bottom section (gruesome I know, but they went in through the front to fix a couple of those screws in) - all in all, hubby reckons about 20" of new scars.

So, for all I'm sore and taking time to do stuff, if I sit back rationally and compare this to last time, 14 screws compared to 8 and around the same amount of incision length, I feel I'm doing incredibly well. I'm older too.....which is bound to have an impact.

So, sorry for such a 'technical' post but I thought you'd like the nuts and bolts of it all (so to speak).....

Just a little list of my post surgical days

Most of the time I feel pretty good, well rested and incredibly well looked after.
Sadly some of the stuff is more challenging so I made a bit of a list to look back on and remind myself just how far I've come.

Post op. Day 6.
Lying here exhausted. The physio made me change beds to a lower one so that if the day ever comes I feel like getting out of bed, at least my little feet will touch the floor.
She made me stand too until I felt ill - I don't think that was her intention, but the longer I stood, the sicker I felt.
I struggled back into bed determined not to give up and fall in a heap on the floor because it looks so undignified. I managed it, but I still think I looked undignified.
I have been blergh ever since.
Not sure if I regard today as progress and think my physio is frustrated with me.
Some of them are good days....and some not.

Post op Day 5
Woke stiff and sore (so what's new?)
Had breakfast all crunched up like a little wizened gnome but grew with every mouthful.
The BMB visited with a nice (funny) gift
The relief physio came, got me out of bed in record quick time, I hurled myself up, full of confidence, only to nearly pass out as most of my blood stayed behind on the bed and the rest fell into my slippers.
Oops.
Rest and a bit more rest.
Felt happy & cheery and remarkably well.
Chef made me the most fabulous ham, eggs and chips for tea.
My bowel decided it wasn't ready for good stuff like that and laxatives were prescribed.
They did not work....

Post op. Day 4
It's Saturday. Yay!
My drugs are working well.
The physio gets me to stand.
Its tough, but done and I feel as tall as a tall thing.
I rest...and rest some more.
It's Saturday and the Strictly Halloween Special.
I had 3 proper meals - yum but they're not going anywhere.

Post op Day 3
I am allowed to eat
It's only been 5 days since my last food so I struggle with a heavy meal of soup.
I'm sore but actually feel pretty good.
I can now only house a small African nation in my belly, rather than the whole continent.

Post op Day 2
My bowel doesn't work
I appear to have a belly shaped like that of a Woman having octuplets.
I can no longer see my feet - indeed, I'm not sure I can see the other side of the room past the bloated, gas filled thing that used to be my belly.
I start to use twitter to tell everyone in the world just how fabulous I feel and how well I am doing - its easy to stretch 140 characters you know!

Post op Day 1
They roll me
They give me drugs
They constantly check my blood pressure and stuff
I lie there and occasionally whimper...

Post Op Day 0
They hit me over head with large hammer to knock me out then use Meccano and a school woodwork class toolkit to fix more metal to my spine.
They screw my spine to my pelvis from the front.....and from the back...
They replace/add 4 levels of metal at the top.
I will be officially bionic once they add the servos (joking)
I have 3 incisions and a couple of other small holes - I don't know how big they are as most of its behind me...!

(What a List) or 'Metal and Morphine!'

It's less than two weeks to go before I will be stuffed full of metal and morphine (wow, what a great title for this post, she says, hurriedly scrubbing out the original title!) and I'm trying to do everything. Today I had my first ever pedicure. During my last hospital visit my feet got so dry and scaley, I thought I'd turned into Alligator Girl* and I don't want to do that again...especially when I won't be able to bend to reach my feet for months (or may be even years!)

Having approached this kind of surgery before, I know so much more to expect and I know just how fast the first couple of months after surgery will disappear. So...with only 8? weeks to Christmas, I'm trying to get all presents ordered (or at least planned!) and am trying to look after my body to get it in great shape. OK, OK - I admit that the shape my body is, you'd hardly call it great, but I'm trying to look after it anyway.

Hubby and I haven't spoken so much about it all (I guess there's no need, he's been through it all before too!) and he is being stoic and all the things a good hubby should be in this situation.  He's also taking time off work after I come home to look after me, but I hope I can be mobile enough so he doesn't have to run around after me too much. I am going to find a bell though so I can ring it enthusiastically and make him feel wanted. Actually, being waited on hand and foot  seems like a bit of a nice idea...especially if my feet turn into those that belong to Alligator Girl! Pass the foot cream dear please.....

I am also setting myself some pre Christmas goals. I want to order Christmas dinner online (or at least all the makings) and I know that will require more concentration than I'm sure to have! I also want up work on my walking - so much so, that I want to get to the cafe in the park - and if possible make it a daily trip until I'm really feeling chipper.

I've got all my clothes etc ready for hospital waiting in the bottom if the wardrobe to be packed. I've for audio books on my iPod for when I can't cope with reading and my kindle loaded with books for when I can. I have 'gentle' games ready for my xbox (I'm thinking "leaning forward running around hitting things games" will not be on the agenda for a while!). I'm recording several TV series that I don't normally watch but that look pretty good and so I'm thinking that I'm probably about as prepared as I can be.
Next week it's see the surgeon & sort out final details and then go through all the pre-op appointments etc that I need to do. The metal and morphine is hurtling towards me at a frantic pace, but I think I'm fairly well prepared...don't you...?

* Question is, just what kind of superhero is Alligator Girl - one who defeats enemies with a single whump of her tail...or just one who laments those scaley feet...?

Ah yes, new metal...

I just decided to re-read my last blog entry and I just noticed how I'd quickly slipped in that little phrase....new metal....

Its true, I've mentioned surgery a couple of times, but did I actually say what? I'm sure I said why...didn't I? Hmmm, now, I have two choices:

1. Read all my old blog posts to see what I have or haven't said.
2. Just tell you all again anyway, on the grounds that after my last significant birthday I must be old and therefore inclined to forget things.

I have decided to opt for number 2, not because I'm really old, but  because I'm currently in a writing app and not a reading one! I will warn you in advance though...if you are squeamish, look away now. I will tell you when you can look back at the screen when all the gory bits are over...

First, some of the historical facts. I had a double major scoliosis curve operated on in 2006 and was literally 'cut in 'arf' as the BMB puts it. They inserted a metal rod in me from (for the technically minded) T9-L5, or to put it another way (for the not so technically minded), from the bra strap to below my waist. The curves in my spine were decreased by over 50% to around two 30°ish curves, neatly balanced above each other. My lovely surgeon left me a single moveable joint at the bottom and lots at the top. He told me I'd probably need to get some of them fixed 'one day'...

Now to the present. The joint at the bottom has given out and my bone graft has failed at the top. None of this is news to long term readers of my blog but I wanted to make sure that anyone reading this with upcoming scoliosis surgery didn't think that this sort of thing is inevitable - because it really isn't.  For me, it was a combination of my age and my spina bifida and the fact that I ask, nay expect, to be able to do all sorts of things I really shouldn't...

OK, now to the future and the gory details as far as I know them - I shall try not to be too graphic! They are going to extend my metalwork at the bottom by going in through my stomach (gawd knows how that works) and because I no longer have enough bone left to screw into, the plan is to add a metal cage which they will fix to my pelvis. If I don't already set off the metal detectors, I will soon! It sounds to most people like I won't be able to bend, but think about it, how much does your back bend when you sit down? Yup, its all hips, isn't it? Oh, and I can't bend anyway (back full of metal don'tyaknow)! So, that's that bit - they will also 'regraft' the top of my rod and 'maybe add some more metal one or two levels as needed', says my surgeon. I just think he wants to get in there again with the hammers, chisels and screwdrivers and have a big happy grin on his face while he plays at being Mr Carpenter with my back, but hey, I have an active imagination!

So...there you are....and oh yes, you can look back at the screen now, as that's the nuts and bolts of it (quite literally), albeit quite briefly. I'll keep you updated as we go.....

Putting my house in order...or something like that...

Its strange, isn't it, that there's nothing like having a deadline to make you get things done -even though I do know someone who always says they love the sound of deadlines as they go whooshing by!

So, I have a date - a date for my surgery that is. Its fairly soon and so I decided to sit down and work out what impact it was going to have and what I needed to get off various lists* to put my mind at ease. I began by putting all my various notepads and electronic devices on the desk and discovered a whole load of things I've been meaning to do. The thing is, that after my next lot of surgery, I won't be able to do much for a while - Christmas shopping for example is probably not going to be at the forefront of my mind and so I have to think about that now....yes, now....and its not even Bonfire Night yet! So, apart from that, the list comprised of getting the electrician and plumber in to do a couple of jobs (think I'm having them come round after surgery, when I'll be slobbing around in my pyjamas for a couple of months? Um, that'd be a no then!) along with various other things like that.  Some of the stuff I've just decided that it simply isn't that important so I've crossed it off one list and NOT added it to another! Feels wicked in a way... ;-)

Of course, there's all the hospital stay stuff to think of too - will I really want to show off the pyjamas I have with Grumpy on the front? Actually I'd be happy to, but they go over my head and I think with new metal in my back, the last thing I'll want to do is lift my arms above waist height! So, new pyjamas then - ones that button up the front, but not ones that make me look like my grandad. This week has been pyjama buying week - I decided I needed several pairs - in hospital you always end up with your nice clean pyjamas with breakfast, or sick or something straight down the front the second you put them on. (Sorry to be so gross, but you know its true...!) That led on to my tidy dressing gown (I'm probably not going to wear it, I hope they are going to let me languish in bed and be waited on hand and foot) but I looked at it, forlorn on the back of the bedroom door and tried to decide how long it had been there getting dusty (I wear the one I like, not the tidy one!). So, dressing gown, wash, check! 3 pairs PJ's, check! 1 nightshirt (maybe I won't be able to waggle my feet enough to get into PJ trousers), check! New slippers (did I mention my slippers are years old?), check! Going into hospital is starting to look like an expensive business and that's before I get into deciding whether to treat myself to a new Kindle with a built in backlight, because it will be so much easier don'tyaknow !

*I love a good list!

More in common than you think.

For many years, I have followed a blog called Wheelchair Dancer (http://cripwheels.blogspot.co.uk). WCD and I have more in common than many people may think, since I am not a dancer and she doesn't do what I do either. Its interesting though that we are both involved at the elite end of what we do. She's involved in dance, I'm involved with sport and of course, we both have wheelchairs....in common with many other folk in the world. I like her posts though - she tells me stuff I don't know, reflects feelings I have and explains feelings I don't. Its interesting just following someone else's life and feeling connected to them.

It was one such recent post, that I identified with, since WCD has just had surgery and she was mentioning her memories of it - the anaesthetic and how suddenly you fall asleep, all those muffled memories of waking, sleeping and drooling, all bundled into a time frame you can't comprehend. I remember after my really big surgery asking what day it was, convinced I had somehow been in theatre for at least 2 days! She mentions the recovery room and the bumpy journey up and down corridors (which I have to add always seem cold) and then she got onto something I've put a lot of thought into recently. It's the person who doesn't have all the drug induced bumpy wooly memories, the partner, friend or parent who does all the waiting. I can't imagine what that's like, not knowing what to do - stay and wait in the hospital, go home and pace the floor? As WCD puts it "The person having the surgery cruises through on happy drugs" but its not so for those who wait - even if they have had to do it before. How many times had hubby had to go through this? 5 or more times? Is he used to it yet?

Like WCD, I know too that when I get home, hubby will take care of stuff in the house. Everything will be within reach and he won't fuss (because he knows I hate it) - he will worry endlessly, but in the end he will be there. Who gets the easier deal here? Would I trade all the pain and healing for the worry....hmm, you know I'm not sure....
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How time has passed....

I know in the past, that I've written about how much I like writing. It probably seems really weird to you all then, that I've more or less stopped blogging. The reason? Well, manyfold....as they say.... It's not that I no longer like writing, or even that I have nothing to say, its just that life has got horribly in the way and also, that I have been writing...I just haven't been publishing stuff on blogger. I started putting together some stuff for a book and so, the blog has taken a back seat to that and also I'm doing a long distance college course and the resultant essays etc add to my typing callouses! Anyway, I'm back (I think) and I'm am freshly armed with a load of ideas and am determined to get back to plaguing you all with my strangest ideas on life, wondering and warped things....

I know when I started writing originally, that I wanted to carry people with me on my scoliosis journey. I wanted to be able to share my experiences, my hopes, my fears and all the gory details (good or bad), just so that other scolio people could have something to relate to. When I was first facing surgery, I read someone's blog and it made a big difference to me to know what they had gone through and how they felt about it all. I wanted to be able to do the same thing through my own experiences. I think that's one of the reasons I decided I wanted to get back to the blog...the thing is, I had my big surgery in 2006 and now here I am, 7 and a half years on and its not been a completely pain free journey and its not over yet. This year, I had one of those significant birthdays and I just thought it was time to tell you all just what is going on now...and what I think is about to come. I warn you now....there's more surgery on the horizon, so there'll be more gory details and all sorts. Please hang on in here with me....I'll try not to make the road too bumpy! *

* I don't like bumpy roads....usually results in me telling all and sundry how bad the impact is....after all - you try doing that with a rod up your back!

The unexpected defrost....

At the moment, we have snow on the ground outside...and the contents of my freezer is in the garden!

Of course, you are probably wondering why....or maybe not....depending on how curious you are...but regardless, I'm going to tell you anyway. The real reason is actually quite boring, but I thought it was a good tip for you while we have such cold weather and thought that you might like to steal my idea.

I went to the freezer today to choose something for tea. I went to open the door, just to discover that it had been left ajar and the motor was working overtime in producing a large number of ice crystals, trying to plug the gap where the door used to be. There was a certain amount of slightly soggy and soft food, which isn't ideal when its supposed to be frozen and the door would no longer shut at all as there was too much ice in the way. I got the Ken Hom cleaver out of the kitchen and whacked at the escaping iceberg formations, but the door still wouldn't shut. I guess it was a wake up call to me to defrost the freezer!

Now, normally I'd run the freezer down before defrosting it, so I could get the entire remaining contents in a cool box, but today, the freezer was full...eeek! It was then I had the inspired idea of putting the drawers from the freezer outside in the snow while waiting for the freezer to defrost. Well, it worked - what a result! Defrosted freezer, frozen food...AND...I don't need to decide what to eat for the next week either as I have a fridge full of unexpected food combinations too!

So folks...hop to all that defrosting now ;-)

New year, new update!

I know that I've been fairly lax about updating my blog, but like everyone I seem to have been busy and just not got round to it. Part of the reason is that it has been suggested that I write my life experiences down (maybe a book in all of this?) and so my writing has rather been confined to doing that at the moment. So far, I've got as far as being about 7 years old...so, if I keep going at the rate I am with the writing it could take some time! In the meantime of course, there has been Christmas, which was quiet, but really nice with a load of family time and of course, after the end of the world, the New Year...so Happy New Year everyone!

Its been a while since I gave any kind of update on my back and I thought that since I am now nearly 7 years post op (yes, really!) and also because I have some news, I thought I'd do a health update. Actually that's a lie, since I have good health, its just my back that is rubbish really, so I'll do a back update.

Towards the end of 2012 I saw my consultant and due to the fact that I still get more pain with my back than he would hope for in an ideal world, he called for an up to date CT and MRI scan of my top to my bottom (quite literally!). This meant 5 minutes or so in the CT doughnut (boring) and a full hour in the big MRI tube (which I seriously enjoyed). Now I know its very, very odd to like the MRI machine, but I do...somehow I find it very hypnotic...but I think I've told you that before. It was actually quite funny before I got the MRI, because they ask you all sorts of questions - things like:

Have you ever had any surgery?
Do you have any problems with your spine?
Do you have any metal inside you?
Etc. etc.

So, after I said yes to everything but diabetes and organ transplant, they said "Oh, it'll all be fine anyway" and so I had the scan...

Weeks pass before the results arrive (this is the NHS you know) and I went to see my surgeon to see what he thought. He took one look and sucked the air in over his teeth in exactly the way mechanics do before they hit you with the big bill (not really, but I'm trying to prepare you here) and said "your bones are rotten". Now I thought he was just being rude, but it turns out, that he actually meant rotten as in all broken and wearing away. Actually - he didn't mean all my bones, just my L5 vertebrae at the bottom, but it seems it needs fixing and there isn't enough bone to screw into any more...so it needs a nice new metal cage. In addition, the bone graft at the top of my existing fusion has failed and so needs redoing. He wants to extend my metal there, just a little bit, just to help it all heal. I guess this is the understated version of what is going on, but this short version means I am back on the surgery list. Waiting is at least 9 months so watch this space.

I guess, just like so many scoliosis surgery cases, who have the surgery done when they are older, that the first fix isn't the only fix. The scoliosis forums are littered with people who need a bit of a second go to get it right, so I'm just joining a very select group. I'll post some more later on how I feel about all of this...if I keep going now, you'll get readers cramp and your eyes will get all crossed..!