I was wondering if I had mentioned that I talk - a lot! 
Well, I do! Hubby says it's because I am on my own all day and I have to make up for it the rest of the time, but I don't know if his theory holds water as I talk to the cats during the day (I know, I know I'm sad, but at least they don’t answer back - much!) Actually my last cat used to answer back a lot but that's another story and one that would just bore you - so I'll resist the temptation to start on yet more rambling... Well, my lovely hubby took me out to lunch recently and I was discussing the fact that I have talked endlessly about this operation. I've talked and he's listened (well, most of the time - that is, all the time he's not been glazed over with boredom). Besides him, I have only really spoken to 2 other close friends (you know who you are and Thank You!) and I've probably driven them mad too with all the gory details. But the fact of it all is this - I need to talk about it - and that's need with a capital N. The only way I have been able to get all of this OK in my head is to explore every option and discuss it over and over. It helps, it really does. Funny thing is, that the blog does the same for me. I write, I read and re-read, editing bits here and there and correcting the stuff which isn't really right. It crystallises what I think and what I feel and leaves me knowing where I've come from and where I'm going to on this journey. And so, dear reader (I just put that in 'cos I've always wanted to*) I recommend it as a bit of self therapy!
* Any ideas where this Dear Reader thing comes from (answers on a postcard please) - I know I read it somewhere but where? Oh blimey, that'll drive me mad now and then I guess, suddenly next Monday (at 2 a.m. or some other equally stupid time) I'll be doing something completely unlinked and it'll pop into my head. That is so weird the way that happens, don't you think?
No, no, no, not that kind of strange phone call - just unusual ones from friends - oh yes and before insults are taken I said unusual from friends - I wouldn't accuse my friends of being strange or unusual (well, not in public anyway). Am I going off the point again?
My friends are brilliant - I guess everyone says that about their friends too but this is my lot and I like them which is what's important. Some of them (despite having known me for years) don't know me very well at all. This is my fault, because although I talk a lot (too much some would say), I don't always tell them how I am. I think many people who live with pretty much constant pain don't want to be going on about it constantly. It's depressing and besides which I don't know why anyone else would be interested. You hear so much about people with scoliosis wearing clothes to hide their rib hump and standing in a certain way in order to look (and feel) like everyone else and you realise that you do that yourself a lot of the time. Heck, it was years before I told many of my friends that I had Spina Bifida and I know lots of people who thought I limped just because I have one leg a bit shorter than the other - and I never enlightened them. For certain, it's not many of them who know all about the 'wonky wiring' in my legs which has resulted in an inability to either feel my feet or know what they are doing most of the time! * (It would be nice if they did something useful while I wasn't paying attention but unfortunately all they do is hang around at the bottom of my legs...)
I dunno if we try and hide these things so we fit in, or just so we don't have to answer too many questions ("Mummy, what's wrong with that lady's back?"). Or even if it's a coping mechanism - if I ignore it and hope it goes away, then maybe I can get on with something interesting in my life? I really don't know, but I know from other people that I am not alone.
Anyway (have you noticed how much I use that word), because I have spent so long hiding my back and my aches and pains from the world I am now in an odd situation. I am having major spinal surgery - my friends know this. What they don't know is why I am having it when I seem to cope so well - "I didn't realise things were so bad" one of them said. Well, I guess that's the point really - I didn't want them to know because I didn't want to be different. Maybe if I had, this wouldn't be such a shock for them - it sure has resulted in some strange phone calls...
*I guess you all do now as Ive just gone and told the whole world....
I was talking to a good friend recently about books, reading, concentration and a whole bunch of other stuff during my recovery. I mentioned that I didn't think I would have the strength to turn the pages of the book and might need one of those grape peeling Chippendales to turn the pages for me as I think it will be a task too onerous for hubby! Anyway, he suggested listening to talking books and told me that you can get them from your local library. I hadn't really though too much about it but it seems like a bright idea in the absence of a suitable page turning hunk...
You probably really don't care what I am taking to hospital, but failing to secure the Chippendales to keep me occupied and a full make up bag to keep me beautiful, I thought I'd concentrate on practicalities. I am basing my list on various lists I've found on blogs, forums and various web pages like this one at http://scoliosislinks.com/PreparingforSurgery.htm and I'm sure most of it will be useful. I thought I'd list my one here just in case you too need to pack for a hospital stay. If not, have fun reading through the list and my reasons.
Things I will take:
- A nice new nightie which buttons up the front - yes I know they will give me a highly sexy hospital gown, but I have no desire to show my bottom off around the hospital for any longer than I have to. I have also heard that raising your arms above your head is very painful so a button up front sounds good.
- A nice new dressing gown - I really don't want anyone to see my old one!
- A sports bottle or bendy straws - well seriously, have you ever tried drinking whilst lying down - what else are you going to use?
- My Archos - OK, OK I'm too poor to buy an I-pod. Still it has all my favourite music on it and I can really annoy the old lady in the next bed by letting her overhear the tinny noises from my cheap headphones.
- Chewy tooth thingies sound good - unfortunately I don't know where to get them from apart from motorway service stations. I shall just have to settle for foul breath until I can walk to the bathroom and try to avoid eating garlic for the whole of my hospital stay.
- Some mints or fruit sweets to suck - sugar free of course. After all if I'm not going to be brushing my teeth (eeew!) then I don't want tooth decay too...
- Some magazines and puzzle books - for all the hanging around before the operation. I'm sure I will be too spaced out on morphine after the operation to even do join the dots.
- No polite way to put this, but some sanitary supplies - don't ask me why, but one of the side effects of an anaesthetic seems to be to bring your monthly period forward - having just finished one means nothing in anaesthetic land. Oh yes and the things they have in hospitals would have been old fashioned when your granny was little - you have been warned! I shall take my own - just in case.
- My cuddly dog (aahhh) that hubby bought me for Christmas - I'm gonna need some serious hugs I think.
- My slip on slippers - which slip off easily and I will no doubt lose under the bed within minutes of arriving (and then I'll probably never find them again!)
- Lip balm - apparently is a life saver according to some people. Even though I don't expect to be kissing too many people this sounds a good idea - I really hate dry, cracked lips.
Things I won't take:
Well apart from the obvious - like War and Peace, I shan't bother with squash or fruit juice - I quite like water (it's my favourite drink after coffee, wine, whisky, beer etc etc!). Also I will let hubby bring suitable clothes to go home in at the appropriate time (any sooner and I might try and escape!). I thought of grapes too, but without a Chippendale to peel them for me it wouldn't quite be the same...
This is something that I came across recently in one of the forums and am reproducing with the author's permission (hence the thanks Chele!) Funnily enough it wasn't until recently, when I had to keep a diary for someone else for a completely different reason, that I had ever monitored my pain levels at all. I was horrified at how often in the average week or month I had to restrict my activities because of pain - even weeks when I thought I was just fine I would lose a day or two. Eeek! Anyway, because of this, I think the idea of a pain diary is fab and everyone should do one (well everyone with pain that is...!)This was Chele's Post:A Pain or Medical Diary is something that can be taken to appointments with you. It means that when you see a doctor and are trying to explain how frequent and bad the pain levels are or what medication you are on, all your information is to hand. It holds the following information:* Health Insurance Policy Number (or NHS Number/Hospital Number)* A day-today account of pain levels* Description of the pain levels* Methods of pain Management* Lists of questions* A brief outline of medical issues* Contact information of each doctor / consultant* A list of what medication.How to set-up a Pain / Medical Diary:You can chose to use an ordinary notebook and layout each page accordingly, but simpler is to use and an actual diary. Each day is already marked out for you. While the space for each day need not be very large, it is useful that it has a few ordinary pages to write other information in. An A5 diary should give you plenty of space and many of them have a plastic pouch at the back which can be used to store appointment cards. Use the diary to record the following stuff:
CONTACT INFORMATION:At the start of the diary write contact information & medical insurance details & inIn the notes Section the following pieces of information are written:PAIN LEVELS / DESCRIPTIONS:* 1 Mild - No Medication Required* 2 Bad - Over the counter medication assists pain* 3 Strong - Prescription medicine relieves pain* 4 Severe - Medication offers little / no relief* 5 Chronic - No relief regardless of measures takenThe above are just examples of how pain can be measured on a scale of 1-5.PAIN RELIEF METHODSA list of the types of Pain Relief used such as:* Types of over the counter medication: Panadol, aspirin* Prescription meds: Tylex, Co Codamol etc* Exercises (swimming, strolling)* Rest & HeatMEDICATIONS LIST:Use plain pages to assign a page to each month and list any medication taken, including dosage levels. This includes inhalers, antibiotics, pain relief.MEDICAL HISTORY:A brief account of when some conditions were diagnosed and treatment received.QUESTIONS:You will always have and think of questions to ask, so make notes in the diary. That way you have any concerns to hand.DOCTOR CONTACT INFORMATION:There’s always an address section in a diary so here you can list your G.P's name and contact information, consultant, hospital etc ..DAY-TO-DAY DIARY SECTIONEach day write what number pain levels seem to be on that day, with a brief description of where the pain seemed to be. It also helps you to see if there are issues that seem to trigger the pain off and see if there's a pattern to when it's at its worst.There, that's that! A long post (and a serious one), but excellent advice that I wish I could own up to thinking of myself. Instead, I have just copied it (pretty much word for word). Isn't cutting and pasting brilliant - it means I still have room in my typing fingers to bash out some more stuff... but maybe I'll do it later!
Sometimes I think too much (I talk too much too but maybe these things go hand in hand). Anyway, I was kneeling on the floor in front of the washing machine and fell to wondering about my new body and what it will be able to do. OK, OK I know that sounds strange and but yes I was kneeling and maybe I should explain...
It's not as if I am so religious I feel the urge to fall to my knees many times a day. In fact I do fall to my knees quite a bit when I overbalance (I once did so with a full cup of coffee and didn't spill a drop which I found (and still do find) very impressive!). Anyway, I digress (again!). I kneel a lot in the average day; I load the washing machine, put away the groceries and all sorts of other stuff on my hands and knees rather than bending. I have strong arms and shoulders, especially for a woman and I just hoick (is that a word?) myself back up to the vertical by hauling on the kitchen worktop or whatever is handy. It works for me, but will I still do this the same way after my op? Something else I do is 'help' my feet into the car or into a precise position by tugging on my trouser leg with my hand - actually its such an unconscious thing for me to do this that I am not even really aware that I am doing it. It's just that recently I was quite surprised when a friend that I have known for ages commented on it having just noticed me doing it. Of course once someone points something like that out, you suddenly become aware just how much you do it – like the kneeling!
Anyway, I know that lots of people worry before their op about how their flexibility will be affected when they have a long rod in their back but that has never bothered me. Because of the spina bifida and the type of rotation I have, I can’t twist very much and most of my back just simply does not bend (hence the kneeling again) - but I’m wondering now, will I have to learn a whole bunch of new tricks just to be able to load the washing machine?
Maybe I should just use a laundry service and then I wouldn’t have to wonder about any of this ever again!
I'm finding it quite an odd time at the moment. On the one hand I am cool about the surgery. I know I have made the right decision and will benefit in the long term from getting it done. I'm actually pretty calm about the whole thing, but with about 2 weeks to go I've got plenty of time yet to get really nervous and stressed out and make life hell for those around me (especially if I try really hard!)
Seriously though - one of the things I am finding oddest (and I don't know if other people get this too), is that every so often a thought pops into my head - wow, this is the last time I will do this! Now, I don't mean that I am going to give up my mad social whirl and everything in my life just 'cos I’m having spinal surgery. I don't expect to come home and put my feet up for the rest of my life but everything is going to change.... my clothes will fit differently for example. Styles of clothing that I never wear at the moment will become an option. I never wear jumpers with long rib sections around the bottom as the rib section rubs on where my lumbar spine sticks out – its uncomfortable and always makes me feel more crooked. Rub rub – your ribs stick out, rub rub, you're lopsided….so, I don't wear them. I like them though (they make your waist look tiny and you look curvy), so I'm looking forward to buying one of those. At the moment, I'm actually not precious at all about wearing tight tops and the like which show off my rather odd shape - I don't mind too much that other people can see it, I'm only bothered if I get reminded myself. I guess there's some kind of weird logic in there somewhere but I'm typing this quite early in the morning so I can’t think that hard...
Anyway, yesterday was the last time that I went shopping in the local big city - next time I go I will be different. I saw bunch of friends over the weekend and it's the last time I will see them like this - next time I will be different. What odd ideas our brain produces eh?
I went in today for my pre-op assessment. Much of it was uneventful and really boring as there was lots of hanging around. Still, you might like to know what went on so here goes...
I had loads of questions asked of me; do you smoke, drink, have heart attacks, take drugs??? Nope I replied to pretty much everything. Have you had an operation before? Oh gawd thinks I where shall I start… Anyway, they want to know all about allergies, anaesthetic risks, that sort of thing. Sensible stuff really. So that was that bit then back out to the waiting room- there was a lot of the back out to the waiting room so I shan't bother typing it again- you'll just have to imagine it at the end of every paragraph!
Next, I had swabs taken from nearly every orifice (I did say nearly). They will test these for MRSA - if I am a carrier then it will have to be treated before I go in.
Then I got to see the surgeon and armed with my list I kept him busy for ages. He was really good and very patient and gave me the following facts. Don't read this paragraph if you are squeamish (you have been warned!). My surgery is complicated (like me) and they won't be able to make most of their decisions until I am sliced open and they can see my insides. Firstly they will do anterior procedure, incision around the bottom of my rib cage, take out the bottom rib (for bone grafts) collapse my lung and get at my lumbar spine from there. They will take out the discs and see how flexible I am and then see how far they can reach to put rods in. Probably not far enough so they will have to flip me over and do another entry from the back (posterior) to put the rods in. I may have to have a second operation (1 to 2 weeks later) to do the posterior procedure depending on how well it's going, how well I am doing under the anaesthetic, how long it has taken up to that point and whether the surgeon wants to get home for his tea. If I'm lucky his wife will be away so he'll be getting takeaway and he'll do it all on the same day! Fusion is to be from T3 to L5 (great picture of spine here: http://www.sisonline.org/pages/spine.html). The next thing he did was to tell be about all the possible complications; things like DVT, infection, paralysis etc. A figure of 10% was put on the last one but he said that the risks of neurological and organ damage from not getting it done far outweighed that! Anyway, I had to sign forms to say I understood and that was that. I am expected to be in hospital for between 1 and 3 weeks all together and will have to spend a certain amount of time in Intensive Care and high dependency unit because apparently with the chest drains etc that they insert, you need one to one nursing. Gosh, I shall feel important!
It was then off for blood and by this time the vampire (sorry phlebotomist) had gone to lunch so one of the nurses had to do it. What excitement, I didn't stop bleeding until I had managed to fill up 3 cotton wool balls with blood. Bring back Dracula I say!
Finally I went for x-rays - firstly, it was "please bend to the right" - aha I thought, that's easy for me as that's the way my spine bends anyway but then I found I had to be propped up on a chair 'cos I overbalanced! The lady was very nice and didn't laugh at me, when she found that my centre of balance was so out of whack - I did my best weeble impression but - oops, I did start to keel over and she had to grab me to stop me from hitting the floor! Next x-ray it was "please stand up straight" (what, can't do straight, that's why I'm here!) and then " finally bend to the left" (ow ow ow - that hurt!). So, that was the end of them - I didn't get to see them to comapre them to my last lot, which I would like to have down. Hopefully I will get the chance when I'm admitted.
After all that they let me go home. Admission date is the 7th February, surgery is on the 8th February and this has been one loooong post!
This is a topic that comes up quite a lot on forums - you don't get much time with your consultant and there are so many things to know about such major surgery that it's easy to forget something. I shall be taking a list with me to my pre-op tomorrow! As to this list here, well, I've tried to think of everything - even the things that I've already asked, but hope it's useful to someone else:
1. What are the risks & benefits of this surgery?
2. What correction do you hope to achieve (i.e. how straight will my spine be after surgery)?
3. Will it be anterior or posterior surgery?
4. How many and what levels will you fuse?
5. How long will the operation take?
6. What will happen if I don't have surgery?
7. Are you doing the surgery yourself?
8. Will I be in Intensive Care afterwards - how long do you expect that I would be in there for?
9. How long will I have to remain in the hospital after the surgery?
10. Am I being admitted to Hospital on the day of the surgery or the day before?
11. How long will it take to recover?
12. Will I get physiotherapy to help with my recovery?
13. When can I start being as active as I was before surgery?
14. How long will it be before I can start driving or return to work?
15. What permanent restrictions are there on activity?
16. Can I talk to another patient/family that had the surgery?
17. What is the scar like?
18. Will I need a post op brace?
19. Do you plan to reduce my rib hump?
20. Is there anything I need to do to prepare for surgery (e.g. donate blood)?
Well, if your consultant lets you ask all that, then you'll be there a while, but this is pretty major surgery - you should be entitled to ask a few questions!
Wish me luck for my pre-op !
I had a bad day yesterday. I had a serious muscle spasm in my back and boy did it hurt - it hung round all day as well. I hate those spasms, the 'normal' pains I can live with and although I have plenty to go round, I know what they are and where they are (the grindy one at the bottom, the scrunched up one at the side, the tweaky one by my shoulder blade ...well, you get the picture). What I hate about the spasms, is that they come somewhere new, somewhere (usually) inaccessible and they just hurt the worst of everything. Its days like yesterday that make me remember why I need the op.
A lot of the time I think I do just fine and that I am invincible and the op is completely unnecessary. Its not like when I had appendicitis. I distinctly remember being in absolute agony and them asking for my permission to operate. "Permission, YES!", I screamed, "just get this thing out of me - use a spoon if you have to". Well, yesterday was like that - not that I think a spoon is quite suitable for spinal surgery. Maybe a knife, fork and a Black and Decker drill.....
Anyway, today I have the after effects and feel like I have been kicked in the back by a horse*. I'm sure that recovering from surgery I will feel like I have been kicked in the back by an elephant and a horse will sound great. Still, at least I got a reminder of why I need to do all of this. It's easy to lose sight of sometimes. 
I may have mentioned that I walk with a limp. I don't notice it myself, in fact I'd think it pretty strange if the horizon didn't bob up and down when I walk but it does make carrying cups of coffee pretty interesting. Not as interesting as a bowl of soup - on a tray - now that is fun -"bowl of soup anyone?" (takes a step) "half a bowl of soup anyone?" (takes a step) "quarter a bowl of soup anyone?".
Anyway, my poor hubby hurt his foot recently and we took him to A & E. I decided to keep him company, besides which I have a vast knowledge of hospitals (hee hee) and know all about following the blue or yellow line. We met a very nice nurse who was walking with us towards x-ray for hubby to get his foot photographed. Oh dear she said to me - as I lurched down the corridor. Are you booked in too - no I said, I always walk like this - he's just copying me! I think she was not impressed by my unsympathetic manner...
Actually on the subject of other people who notice you limp, I get really fed up with those 'accident' lawyers. They rush up to you in the town centre - "have you been hurt in an accident?" they ask, eyeing your walking stick and limp. For ages I wondered why they always picked on me (told you I don't notice the horizon bobbing up and down) and haven't yet managed to think of anything witty or pithy enough to say to them on the spur of the moment - altho' I do admit to having asked one of them once why he thought I might have been...and he didn't have an answer...
I finally got the call this morning. I go in next Thursday for my pre-op assessment and then I am provisionally booked in for surgery for the 8th of February (going in to hospital on the 7th). The secretary asked me how I felt about it and I didn't quite know what to say. I phoned hubby and he asked me the same thing with the same response which is odd because I am rarely (if ever) lost for words!
Anyway, now, a bit later in the same day, I have finally pinned down what I feel more than anything. I am relieved; relieved that all the waiting, hoping and worrying is over and relieved that it is finally going ahead. Don't get me wrong, I'm still all the other stuff too, but just think in 6 months time when I have recovered, it could be a whole new life. In fact, even if I don't get best results, it will be a whole new life in that I will be much more certain of what my future holds.
I have decided to make a list of stuff to take into hospital based on other lists that I have got from (those wonderful) forums and I also thought I'd make a big pile of books, jigsaws, DVDs and CDs that I've been meaning to read, do, watch and listen to. I shall be very busy during my recovery I think...*
*Of course I will probably feel like sh*t and still not get round to reading, doing, watching or listening to any of it but still, my intentions are good! 
I have a friend (well it's my friend's hubby in fact) and we had fun when we went away on holiday with them. (No, not like that!) Coming back he set off the metal detector arch at the airport - "Please empty your pockets Sir" they said (in Spanish) so he complied and went back through. The thing beeped again so they got out the little hand held wand and waved it over his trousers - it beeped insistently just below his waistband on either side. "Keys" they said, "money?" (in Spanish) - "No" he said - "new hips" - it took a while but they finally got it and let us all though.
Well, I've heard that if you have rods in your back the detectors don't go off and I've heard that they do - given my experience with my friend, I can't wait to fly again once I've been operated on. Just watch me beep beep beep the place down. Keys, money, bra strap? They'll have no idea will they?
I'm excited because of the potential improvements to my current quality of life and that I finally have the chance to do something about it (or at least get something done). I am also excited because I know that I don't have to look forward to a future of guaranteed degeneration.
I'm really scared partly because this is gonna HURT - but mostly because I am frightened of what the future holds. This could change my whole life - for better or worse and I am bothered by the simple uncertainty of it all. Having said that, the uncertainty of winning the lottery or not has never bothered me - and has never stopped me dreaming either...
Today I called the hospital as I have heard nothing about my operation date and I am now approaching the magic 18 month figure on the waiting list. (I think the hospital gets fined if they keep you waiting over 18 months so the chances seemed good that they might be able to give me some news). Besides which, the longer it goes on the more twitchy I get about the whole thing – I want it over with – and then people keep asking me when’s the big date like I’m getting married again or something! Actually, that’s a fib about the ‘big date’, but they do keep asking me when it is likely to be. To get back to the phone call, the person who spoke to me said she had no idea why I hadn’t been called in yet, but good news, they did know I was still waiting. That’s the good news?? Anyway, she sounded worried and puzzled in equal measure that I was still ‘dateless’ and told me she would find out what was going on. A call back is promised when the left hand finds out what the right one is doing…….
Someone once explained spine rotation like this to me and it kinda makes sense. Imagine each of your vertebrae is a little aeroplane with a pair of wings (well, they would have, wouldn’t they?) – and all the little aeroplanes sit one on top of another. If your spine starts to curve/topple off to one side the little aeroplanes end up banking to try to stop falling off the pile. For some reason (probably easily explained by a pilot, or a rocket scientist or a brain surgeon or other clever type person) they always end up banking in the direction of your curve and this gives a rotational component to your curve. All scoliotic spines have an element of rotation like this. Thus – I have two curves – my lumbar curve goes left and so does my rotation – it is a bad curve in a small space so I don’t notice the twist so much because of the small height it occupies. My thoracic curve is longer and curves to the right as does my rotation. At the top of my body, my rotation is quite noticeable – especially to me. When I look down past my errr chest (please note how polite I am), I can only see my right foot – my left one is completely obscured by my left urmm (oh heck – I can’t be too polite about this) boob! I can actually see how far I rotate quite easily. Little pilots must be working overtime….
I get heartburn. Well I bet you think that's really exciting and what has it got to do with scoliosis. Strangely it started just a couple of years ago and it works like this. I go shopping, I walk too much and my back aches. I got to bed and go to sleep. At 3.30am (sometimes 4am) I wake up in agony with heartburn. It doesn't matter what I eat or drink - I eat curries, drink coffee and tequila (not in the same mug) and put all sorts of rubbish food in my mouth and don't walk too far and I don't get heartburn. I eat steamed chicken and rice but trip the light fantastic (exaggeration I admit) and am in agony!
I have a very nice doctor who gave me all sorts of tests and lots of tablets before she came to the conclusion that it was a "mechanical" problem. She thinks that with the curve and rotation of my spine (I must explain rotation at some point as its fun) - my spine lies too close to my stomach valve these days - I do too much, around it gets inflamed, presses on the valve and the next thing you know I've got acid trying to escape via my mouth. What makes it worse is the following morning I can't swallow my toast 'cos my food-pipe is sore.
Anyway, to the anecdotal comment - this is me, but I've discovered other people get this too - weird huh? So the big question is this - will they make it better once they slice me open and stretch me out on my own internal rack?
