My left leg

I guess you all want to know what kind of state I am in at nearly the magic 3 weeks post op so I thought I’d tell you.

Of course you all know now that I am super tall at a lofty 4ft 11”. You might think this unnoticeable, but everyone seems to notice straight off and I am surprised at the lack of crick in the neck that I am getting when talking to most people. I am also remarkably straight – so much so that people are sitting with their head on one side to talk to me ‘cos they think it all looks wrong otherwise! Seeing myself in a full-length mirror just looks odd. Before the op, I would pose in the mirror, trying to stand up straight to see what it would look like but every time I let go the pose I just slumped over to the right and ended up squiffy again. Now, every time I look in the mirror I expect to slump to the right at any second but it just isn’t happening. It’s hard to get my brain around.

My scar is awesomely long – running in a kind of spiral from around my navel past my ribcage on the left and heads around towards my shoulder blade at the back. Its 13 or more inches long (and I guess I’m about 8” armpit to waist) – as I said awesomely long.
All this is great and I have only one real hiccup at the moment – having this op has thrown into sharp relief the problems caused by my spina bifida and spinal cord problems as opposed to those caused by the scoliosis. It’s good news for people who are awaiting this op who only have the scoliosis as that part has been a huge success. The other stuff, well, lets put it this way, I can’t get around without either my Zimmer frame or my crutches ‘cos my left leg just doesn’t want to play at the moment. Between the massive change in balance and the bit of feeling I've lost, I'm having to learn how to walk again! Give it time and a bit of bullying by yours truly and I’m sure I’ll get it going – anyway, I’ll keep you informed - at least it's keeping me out of mischief!

What goes up…

…must come down! – No, don’t worry, I haven’t fallen over! Good job too, as at the moment all the hardware is not permanent – yes it’s all screwed in place, but it’s the bone grafts which will really hold me straight in the years to come and just like breaking your leg, the bone takes time to grow and set. In fact, the metalwork is only there to hold it all in place until the bone sets – if they wanted to, they could take it all out once the bone has actually fixed in its new position! Seems amazing, but it’s true.

Anyway, to the ‘must come down’. Yesterday, I felt great when I wrote my entry and was really on an ‘up’. Just a few hours later, whilst attempting to get to the loo, I came over all faint and ended up feeling quite poorly for a couple of hours. I ended up snoozing in the chair for an hour or so before deciding on a very early night! Once in bed, I slept for almost 10 hours waking only briefly once in the night and now am back to feeling pretty great again. I think for the first time in my life I am going to be a morning person…

Oh yes, and to all of you who are worried that because I am stubborn, pig headed and often downright stupid (among other things) that I will suddenly be rushing off to do this or that and end up overdoing it, please don’t worry. At the moment, it takes me an hour to wash and dress and I am demanding food that doesn’t need cutting up as having to use both a knife and a fork is just too exhausting. It’s not that I have suddenly developed a sensible gene, but major surgery like this sets its own guidelines – your body gets tired and hurts at quite simple things – it’s worth listening to it!

BTW, Kat came home yesterday so we not only got operated on one day apart but came home one day apart too. Look after yourself Kat!

Drugs and flowers?

Well, I’ve now been home almost a whole 24 hours. I feel pretty good mostly. My mattress is much better than the hospital one but I don’t have a bed goes up, bed goes down at home so last night’s sleep was broken but not bad. Only one top up painkiller was needed so that says it all really. I did discover that my 12 hour slow release tablets work best if topped up every 12 hours (rather than 12 hours 24mins that they got this morning) – it was a useful (if painful) lesson.

I got a really nice lay in- none of this woken up at 6.30am by the change in nurse’s shifts before (joy of joys) being woken at 7 for breakfast, washing, bed changing etc all by 8 am. Eeek – as my pyjamas say – “I don’t do mornings!”

Anyway, I intend putting in all kinds of (maybe useful) comments and wonderings about my hospital stay and the surgery and stuff over the next few days. I expect it all to be pretty disjointed (just like my new spine – hee hee) but also want to keep everyone abreast of my current progress so I will try and continue with the daily updates to the blog.

One last point (for now) – I just want to say I can’t thank you all enough for all the wishes, cards and flowers. I got home from hospital and hubby had put all my cards out on shelves and it was such a nice sight that I felt quite emotional – and that was before the florist called! Thank you all so much for caring….I don’t think I will ever be able to express my appreciation enough.

Whoo hoo! I'm home!!!

Yay - I am home!

I am finally settled in my comfy chair after a journey which involved going over all the bumpiest roads in two counties - well, that's what it felt like! Actually I have been worried in my new straight state that my comfy chair that has always been so comfy when I was crooked would suddenly be all squiffy and not comfy at all! Thankfully with the help of my nice tri-pillow I am as comfy as I can be at the moment. Having a rib removed makes life sore enough without all the other stuff. I do have a comment on finally being comfy on a chair tho' - what is it with the chairs that they put beside hospital beds - leaving aside the fact that my feet didn't touch the floor (so what's new) thay have to be the most uncomfortable chairs in the world. What is this you reckon - kill or cure??

Anyway (bet you missed my many anyways) I am gonna sign off here - mostly 'cos my brain is mush from all my many narcotics (aahh!) and I am having to type everything twice 'cos I can't figure out the spell chequer...........don't worry, I will post another entry soon (and one which makes more sense).

Anyway, I am home.............and straight.......................and tall.............wow!

24/02/06 - almost there

Well, she's not had a bad day today - "pretty comfortable" all day, she said. Famous last words... not half an hour later, it seemed her last painkiller had worn off (8am, 1pm and 10pm - strange distribution; we'll fix that when she gets home). She had one of those spells where she couldn't sit or lie any way which would ease it, but we worked something out, with a bit of a foot rub and a heat pad, and I left her looking a bit more relaxed (the Oxynorm she asked for might have helped a bit, come to think of it).

Well, she comes home tomorrow, so - who will write this blog tomorrow? Will there be an entry tomorrow? Will there even be a tomorrow, some philosophers ask?..... Only time will tell.

Well, it's been nice chatting to you, anyway.
16 days post-op,
signing off,
"Hubby".

23/02/06 - up and down...

...steps, that is. She did the stair test today. "I've seen these things before", she thinks; "three steps up with a handrail and three down the other side - easy". So then the physio says "Let's just go down the corridor and see you walk up the stairs." Stairs? A whole flight?!

Well, it was no problem, really - but coming back down: "Just bend forward and hold on to the banister ahead of you" -Oh, no! That's the shortcut to the quick way down, that is. Not our girl - she has other ideas. So after a small disagreement with the physio she came down standing up straight, holding the banister by her side (helegant, what?). She's not good at taking orders, my wife.

Actually, that's her only grumble about the hospital: the physio and the Pain Team want to treat her just exactly like any other patient - follow the formula. You'd think with a ward full of hips and knees, they'd realise spine cases are a bit different, and spina bifida cases even more so. She's had a lifetime of learning how best to make the most of limited mobility and deal with pain - they should listen a bit more. Actually, the Occupational Therapist was a lot better, and my girl has worked out her own pain medication plan with one of the more sensible doctors, who could tell she knew what she was talking about.

So, to cut a long story short, it's definite - home on Saturday.

She did whisper a little tale to me: a knee patient in the next bed had a visitor, who examined the six-inch scar down the middle of her knee and said "Coo, that's a big scar". The Little Woman says she had to restrain herself from yanking up her PJ top and saying "Call that an incision - get a load of this!" She's no stranger to scars. Sometimes she has conversations with people that remind me of that scene between Quint and Hooper on the Orca.

Anyway, I started this far too late tonight, and I've got to get some sleep while I can, before she comes home and runs me totally ragged!

Nighty-night
"Hubby".

22/02/06 Shaky steps

OK, so walking sticks just don't hack it yet. She was a bit too shaky with them - so the physio has produced a pair of crutches. Looks like we're going home with a walking frame for round the house to start with, two crutches for short movements outside (like to the car) and for later when the frame isn't needed, plus instructions to use her wheelchair for anything much more - for now.

Oh - the little "going home" phrase slipped in there somehow. Well, we're planning for Saturday - stair test permitting. I think that should be covered tomorrow or Friday. She definitely wants to be home in time for the Ireland-Wales rugby on Sunday!

The Dressing came off today - couldn't count the stitches, they'd all dissolved! Rats! Will just have to measure the scar instead - it's a cracker! Chest drain site still needs a dressing (it is 5 days more recent, after all).

The nerve pain is driving her nuts, though. This morning, nothing seemed to stop it and she couldn't find any way to sit or lie which relieved it - she admits to tears of frustration. Then, lo and behold, she discovered that a heat pad on her back relieved the pain - including down her legs. The Pain Team have got her "Gavapentin"(if that's how you spell it : I keep thinking "Rurapente" - let's see how many of you saddos recognise that!) up to normal recommended dosage now. They have suggested increasing it further, but the doc reckoned it takes a couple of weeks to become fully effective, so didn't really agree - and neither does the patient, if heat pads can help.

Nearly finished the hospital phase (for now?). I'm looking forward to getting her home - just wondering if we'll need separate beds for a while.

Speaking of bed....
ZZZzzzz.....

21/02/06 - "every day in every way..."

"...she's getting better and better". Now getting into bed unaided safely. With slightly better trunk mobility, she can now reach to lift her legs up (wearing PJ's helps - no legs on a nightie!).

Day 13 post-op: The physios want her to stop using the walking frame and try two sticks tomorrow, so I took hers in, 'cos the hospital didn't have any short enough - but hers will now need lengthening! Looks like two new sticks to be bought.

She made it up to the Day Room today, and is walking back and fore more easily. The thing that's annoying her most now is the nerve pain in her legs, which has spread to both legs and right round her waist. It makes the areas hyper-sensitive to touch. The surgeon reckons that even once they get the pain meds up to full strength, it may be a long time before it fades enough for her to reduce them again - possibly a year! But that's a small price for long-term stability.

More tomorrow.
"Hubby"

20/02/06 - the inside view

Day 12 post-op and our Leading Lady finally got to see the surgeon. He is really pleased with the results, and says they got better correction than they initially thought they could. Pedantic so-and-so reckons she's still carrying one shoulder "a bit low", but all in all, he's very happy.

Apparently, when they were correcting her rotation, the previous L4-L5 fusion moved, and there was a risk she would end up with a forward bend, so they had to put in a small reinforcing "cage" to keep that joint in the vertical plane (or something like that - I'm sure she will give more technical detail for the interested parties later). Whatever, it's worked.

On the down side, he thinks there is a real possibility that they may need to do a second op, as the lumbar curve is no longer flexing and taking the strain, so the thoracic curve may now start to go over the other way. But they'll keep a close eye on her, starting with a checkup in 6 weeks, so let's not pre-judge it, eh?

She had a better morning (made it to the loo, the washroom and back to bed this time), but was a bit too tired later to try for the Day Room trip. Of course, they are reducing the Oxynorm painkillers, as a count-down to sending her home, which makes it that bit harder. And she was distracted by visitors - that's her story, anyway! She is walking a bit more easily, though. She found a way to get back into bed unaided today, too - but paid for it later and decided it probably wasn't a great idea. She's got to learn not to do too much too fast.

BTW, thanks to everyone for the encouraging comments, cards, gifts (she's becoming a fluffy toy magnet, this girl), chocs and visits!

Not much more to say today.
Cheerio
"Hubby"

19/02/06 - objectives

Not so great a start today - got up and walked to the loo (it's about 40-odd feet or 14-15 metres by my guess), then managed to cross the corridor to the washroom, but needed a wheel back to the bed. A tad too much pain to cope with the walk back. Being the way she is, she was a bit disappointed. It seemed OK to me!

Still, later on she did better. She's setting herself a daily objective, and today's was to walk to the nurses' station - that's the other end of the ward, and probably about 70 feet/22 metres away. It took the nurses by surprise! Then, after a break, walk back. She didn't own up to how long it took, mind! I think tomorrow's objective is the Day Room - that's about another 5-6m.

Day 11 post-op, and today was the first day she didn't go back to bed for a lie-down after lunch - she sat up in the armchair all day, and went back to bed at about 7pm. She's paying for it a bit, though - a bit uncomfortable when I left her.

Nothing more dramatic than that today, I'm pleased to say.

All for tonight.
"Hubby".

18/02/06 - a girl feels better with clean hair!

10 days post-op: today's big news is that she washed her hair this morning. That's right - she washed it, not a nurse. Mind you, she couldn't bend over the basin, so she got as much water over herself, her slippers and the floor as her head, but still...

She's toddled back and fore to the loo a few times today, too (there's still a limit to how many times she can do that, though). And she can now get out of bed without help, although she still can't quite get back in. However, potential patients should realise that the problem is with getting her legs up on the bed, due to her normal lack of motor control, not as a result of the op - if she was normally fully mobile, she would manage that unaided as well.

Her dressings were changed today, and apparently the incision is clean and neat. The chest drain site in her back is at least as uncomfortable, but also OK.

An interesting effect - she's noticed over the last couple of days that she starts the morning with a flat stomach, but by the evening she's feeling distinctly tubby ("pregnant", she said). It seems that her abdomen swells as she spends more time upright and/or mobile. Nurses have said they notice similar swelling in the legs of hip or knee patients, so it's probably normal post-op effects.

More news as it comes in, folks...

A bientot
"Hubby".

17/02/06 - catching up

Well, those of you who know my wife know she's independent and determined. Now they've got her analgesia mix right, there's no stopping her. Looks like she's made up for the two bad days earlier in the week already.

She's gradually teaching the staff that she knows more about how her body works than they do - and about coping with pain and limited mobility. If they do things her way, it's a lot easier! So now she's getting in and out of bed (carefully!) with much less help, and can walk to the loo on her own (when she feels up to the effort). She persuaded them that using a frame would free the 2 nurses who were walking with her. They didn't want to let her, afraid she would lean on it and create a bad posture (not good with all that metalwork), but once she demonstrated that she isn't leaning on it, and it's only there to catch her if her balance goes, they let her have it.

She's eating much better, her blood count is good (probably higher than it's ever been!) and her only grumble now is that she hasn't seen the registrar since the day she couldn't get out of bed. She's eager to discuss the correction and get the surgeon's viewpoint!

Humourous moment - she was telling me how a nurse who got her a clean nightie commented on how short it was, and she told him "Not on me, it isn't - it's down to my knees", when I had to point out to her that it isn't any more!

'bye for now
"Hubby"

16/02/06 first steps

Well, tonight is an easier report!

The Little Woman had a good night's sleep last night, and felt a lot better. Medication is now right. She had a visit from the physio today, who asked her if she could stand and possibly manage a few steps. Typical of my girl - she walked half the length of the ward and back!

She did have a spell of sickness - but it was reverse peristalsis (she said she'd never been sick so effortlessly and painlessly!). Right after that, they took her off to X-ray for the scoliogram.

What can I say? Wow! There are gridlines on the film, and the vertical line through her neck runs straight down through the middle of her.. er.. pelvis. She's gonna be really pleased to put that up on the blog when she gets home!

She ate lunch and tea today and looks bright as a button (although the getting in and out of bed bit is no fun, she says - I probably wouldn't want to see how hard she has to work at this, but it looks like all the worst is behind us).

If anyone feels like visiting at the weekend, she feels well ready for visitors, and would welcome the diversion.

I'm gonna have a little celebratory glass of something nice!

'Night, folks
"Hubby"

15/02/06 - downs and ups

Day 7 post-op: Our Heroine had a very bad night last night. Just after I left, she started feeling very hot, and her actual temperature dropped dramatically. She was feeling sick, and in a lot of pain - the Tramadol (not Voltarol after all - my mistake) just wasn't cutting it, and even morphine tablet top-ups didn't help. Severe pain throughout the abdomen and chest.

To cut a long story short (she'll provide the in-depth account later for those with a vested interest in surgical recovery), they decided that, after the general anaesthetic, 6+ days of total constipation was having a dire effect. Having the chest drain in 2 days longer than normal hadn't helped the tenderness in the chest, either. The night was the worst part of the week so far, with very little chance to sleep.

Some relief was obtained during the night, but she was still in a very bad way in the morning, and didn't even get up. The on-call doctor, anaesthetist, pharmacist all said - stay there and rest! So no scoliogram or physio again - we're falling behind timetable now. It got sorted out eventually, and they changed her analgesia mix as well. By the evening she was feeling much better, and far more positive about tomorrow. Even the patient across the ward and 2 beds down could tell she was looking better.

One point to note - Health & Safety being what it is today, nurses are no longer allowed to lift patients! Getting back into bed after getting out in the night was too much for Pip - at her height, even with the bed at the lowest, she couldn't get her bum up on it, and was too weak and in too much pain to hoist herself up. In the end, regulations went by the board, and nurses had to help her up onto the bed. (She has repeatedly said the staff have actually been excellent - very helpful and friendly.)

Anyway, we finished the day on a high note, with her legs becoming more mobile again, pain under control (now just concentrated around the incision and where the chest drain had been), and feeling more cheerful. She said she may well go to bed with Jeremy tonight ("The World According to Jeremy Clarkson", that is! - She feels clear-headed enough to read a little at last.).

I think I'll do something similar (when I've finished this, put the laundry away, got together the things she wants for tomorrow, set the video for tomorrow evenings programmes, and what else was there...?).

G'night.
"Hubby"

14/02/06 - a step back

Not such a great day today.

They took away the "happy button" and put her on Voltarol, so early morning was not good. Getting out of bed was very painful, and she sat in the chair all morning, disinclined to move. By midday she was feeling sick and in a lot of pain, so struggled back to bed. No physio; no scoliogram. (The registrar was as disappointed as she was, not getting the x-rays done!)

Her blood pressure was fine today, but her actual blood count was down, so she needed a transfusion.

She ate a bit more for tea tonight, but later started feeling hot and a bit sick again. By the time I left her tonight, they were putting up a second unit of blood, and she was pretty pooped. I guess it can't all be plain sailing, but she was feeling a bit down by the end of the day.

So - scoliogram rescheduled for tomorrow, and an interview with the Occupational Therapist has been scheduled, to assess what aids she may need to help her at home through her recovery.

On the plus side, some of the feeling is returning around the edges of that numb patch on her leg, and the doc says they'll prescribe some tablets to help it recover, too. Hopefully it should be back up to its accustomed level in about 6 weeks, I think she said.

Not much more to report tonight.

"Hubby"

13/02/06 - out of bed

I hope no-one's getting bored with my ramblings - I'm getting to feel like a bit of an old gossip myself!

Anyway, day 5 post-op, and she's finally got rid of the chest drain. (Finally got rid of the horrible hospital gown and into a decent nightie, too.) They let her keep the "happy button" for today, though. The IV needle in her right hand clogged up this morning, like the one in her left did last week (keep pressing the button - why's the pain not going away?) and the lack of analgesia meant her pain levels went up a bit. They wanted her calm for removing the chest drain and her first time out of bed, so she got to keep it, with a new IV in her left elbow (more holes than best Leerdammer, this girl). On to Voltarol tomorrow.

She was in a chair for about 3 hours today - quite a long spell for first time, so she was a bit tired when I saw her this evening. She says it felt odd - she looked straight down and was looking between her knees rather than at the right one!

Other encouraging news - the registrar says some loss of sensation in the legs post-op is normal and should be temporary, so the patches should come back to life. He also said he anticipates her being discharged about 2 weeks post-op, so that's the middle of next week, for those who are planning visits.

One of the nurses asked what a "scoliogram" was tonight, so we got her x-rays out. Well, it was like "film night" ("movie night" for the US readers) - nurses appearing from everywhere wanting a look. I think they get lots of knees and hips, but these spine jobs are weird and interesting. What brought up the subject? She's getting excited about tomorrow - she gets her post-op scoliogram done. Bad news - the standing up bit (groan); good news - can't wait to see the films! (How straight will it be? How many screws?)

That's enough for tonight - it's 10:45, I've only just had my tea, and I'm as knackered as she is. I have a good healthy glass of red wine here, though - to help me sleep, honest!

Ta-ta (or as they say in Cardiff "ta-ra, now")
"Hubby".

12/02/06 - patchy progress

Well, me and my big mooth! Unfortunately, after I left last night, her chest drain started filling again, so she hasn't had it removed yet. We're now 4 days post-op, though, and there's been virtually no further seepage at all today, so I'm pretty sure it will be removed tomorrow, and they'll take her off the morphine.

On the matter of chest drains (our more squeamish readers may wish to skip this paragraph), she told me that she had had chest pains on Friday, and the on-call doctor couldn't be sure whether they were her usual heartburn, or irritation from the end of the drain tube (I warned you - if you did read it, don't think about that too long!). So you can see how the drain may well be a big factor in her discomfort. She's got her heartburn medication (acid-suppressants) with her, and is taking it regularly rather than "at need", to be on the safe side.

She really enjoyed a surprise visit lunchtime, and says the cards he brought were really nice, although she nearly broke his fingers when she grabbed his hand for support during a coughing fit. If any local readers have time (and want) to visit, she is much more alert and chatty now (she kept me there for 3 hours tonight!) - email me on any of our addresses for visiting hours/directions.

She's sleeping better, and her obs are now down to 4-hourly; her blood pressure is back up to normal (actually a smidge above her normal, but still a little lower than most - she doesn't do "normal", this girl). She has past experience of several operations, and was well prepared by what she has read on the forums and blogs, but is still surprised how washed-out she feels, even now. She asked me to take her MP3 player in yesterday, but so far she can't be bothered to plug in the headphones and press the buttons!

On a slightly down note, she thinks she has lost a patch of feeling in one leg (shame - she doesn't have much anyway!), but isn't sure how extensive it is, as she can only check the bits she can reach with her hands (kind of like the old joke "Doctor, I can't feel my legs" "It's OK, sir, we've amputated your arms"). This is not likely to be a problem for most scoliosis patients, though - it is likely a result of her tethered cord, and it may not be entirely coincidental after all that they stopped the op at T10, which is just below the point of tethering. She has owned up to one or two other little concerns about her "wiring", which I will leave her to explain to the clinically interested parties when she gets home.

She's sitting up to 60 degrees now, (when she feels like it - bed goes up...) and the physio has started her on breathing exercises to breathe from her diaphragm (stomach-breathing ratehr than shallower chest=breathing). But too much tends to provoke coughing (and you just don't want to go there - ugh!)

Anyway, that's about enough for tonight. I hope there are not too many mistakes in this - it has been very difficult to type with one cat sat in front of the screen and another rubbing herself all over my hands! (We're too soft with these animals, but our cat-loving readers will understand.)

10-10
"Hubby"

11/02/06 - elephant tales

Things are moving along. After I left our Leading Lady yesterday, they reduced her obs from hourly to 2-hourly. She slept a bit better last night, but you know hospitals... doze for 20 minutes, wake up uncomfortable, press the "happy button" ('Mmmmm, morphine...'), repeat steps 1-3 until just about properly asleep, only for some nuisance in white to wake you to check your blood pressure and pain levels ('mild until you woke me, moderate now').

Actually, her blood pressure is normally a bit lower than average, and it's been down quite a bit since the op (mostly through inactivity and the relaxing effects of the "happy button"). But they put up a new drip today - something to bring up her BP a bit. I'm sure they called it Jello, but I might be mistaken!

Tomorrow could be a big day - the leakage in her chest drain has slowed and they think it will probably be taken out in the morning. That will make her a bit more comfortable, but on the down side, they will most likely take away the morphine tomorrow, and substitute another analgesic. Plus, as soon as the chest drain is out, the physio is hovering...

So, where does the elephant come in? Avid students of earlier chapters will remember she expected to feel like she'd been kicked in the back by an elephant. Well, she tells me the sneaky blighter seems to have kicked her in the side instead! Strangely, lying on her back, in itself, is less uncomfortable than it has always been in the past. (Early days, and it may be that "happy button", but lets hope it's a good sign.)

For all those kind souls who repeatedly express concern for my welfare through this - be of good cheer, I'm doing fine. Bachelor catering, therapeutic administration of alcohol, and numbing the brain with TV bring down the stress levels a treat! (But why do I watch Casualty and Holby City? - I blame it on herself for getting me into the habit.)

Anyway, I'm starting to ramble, so I'll sign off for tonight.

[aside to Robyn - glad it helps, that's why she started this and instructed me to keep it up.]

Nos da
"Hubby"

10/02/06 - conversation

48 hours post-op, the Little Woman has now had her N-G tube removed, and gone from constant oxygen mask to nasal specs which she is using occasionally. She still has her chest drain in, and is happily playing with her morphine pump, but no longer has the paracetamol drip.

Today she had the delight(!) of a bed-bath, but with a clean gown and her glasses on so she can focus on the world, she looks a lot brighter (and hopefully feels it, too). She's had a few (only a few) mouthfuls of food today, so that's another first step on the recovery road. This evening she was able to hold a conversation, but was pretty tired by the time I left, and not looking forward to being "turned" again - that periodic exercise of rolling the patient to prevent bed-sores (and to check the dressing, I assume). It's not a pleasant experience at the moment, so I left her to it to avoid any loss of face!

I have passed on readers' comments to her, and she thanks you all for the kind thoughts.

TTFN
"Hubby".

09/02/06 - a changing picture

Well, what do you know? I guess there's only so much you can tell from X-rays and scans - there's nothing like hands-on examination...

Having spoken to the consultant this morning, we discover that far from the original plan to fuse T3-L5, the team decided that her thoracic curve is only a compensatory curve rather than a fixed curve, and have only fused T10-L5. So they managed to do that all from the anterior incision - no posterior access necessary.

For those less "expert" readers who are merely following this blog for news updates, that means they think the upper curve will correct itself over time, as it is not a real defect, merely the spine's own attempts to compensate for the lower curve.

The plan is to leave it at that, pending a check-up in 6 weeks, when they can assess whether it is straightening out on its own, or whether there will be a need for a further op. Fingers crossed! After going through this once, she won't want to do it again in a couple of months! But if they're right, then recovery should be quicker and easier than we feared.

BTW, she's back on the ward already - scarcely 18 hours post-op. That's a lot sooner than either of us expected. OK, she's still got wires and tubes everywhere, but it's a good sign that she's considered stable and doing well.

That's probably most of the exciting stuff over until she gets back home ("touch wood"). Any further updates between now and then may be a bit shorter.

"Hubby".

08/02/06 - the view from ICU

Hi, all. The Little Woman says "points to self, smiles, thumbs-up gesture", which I take to mean "tell everyone I'm OK".

I missed her this morning - by the time I got to the hospital at 11am she'd been taken down to theatre. She got back from theatre to ICU some time between 5 and 6pm. I managed to get to see her at about 9.30pm. By that time, they'd revived her and removed her breathing tube. She's wired up to every monitor going, as usual for ICU, with an N-G tube and a chest drain, but they've already reduced her oxygen levels and her sats are just fine, so we at least know everything's OK on the lung front. And she's getting fidgety and moving her legs, so the neural damage/paralysis risk bit is OK, too. As expected, the nurse asked her to wiggle her toes - but I explained she doesn't do toe-wiggling; shuffling her feet around is about the closest, so that had to suffice.

She's obviously finding it difficult to speak at present, but I did catch the question "What day is it?" I think she was surprised to find they'd brought her round so soon. She had an epidural, but now has the good old PCA morphine pump, so that's familiar ground.

I still don't know if they managed to complete the entire job today - I will need to speak to one of the surgical team tomorrow to find out. I will let people know when she's back on ward - the ICU staff seemed to think it might be tomorrow!

I'm going to settle down now with this large glass of scotch and think about sleep soon. It's 23:34 and it's been a long day.

Night-night.

"Hubby".

07/02/06 - Checked in

That's it - I've left her! - at the hospital, that is. The ward seems nice - efficient, friendly staff and the bed has "Homer Simpson" buttons (you know - bed goes up... bed goes down... bed goes up...).

All the usual disclaimers signed, we saw one of the surgical registrars on the spinal tap - I mean spinal team - he sounded very confident, and showed us the Bending X-rays taken during her pre-op assessment, explaining that they would hope to achieve at least the amount of correction displayed by bending contra-curve, so to speak; but the main aim is to get her head back over her centre line.

Anyway, the irony of it all is that after days of worrying (I hate surgery, and can hardly believe what we can get away with doing to the human body these days), I now seem a lot calmer - just as the Little Woman is starting to feel the first signs of tension. But she's still feeling very positive and practical, as usual.

She's scheduled 6th on the morning list tomorrow - probably about 11.00 to midday start. That'sproviding they still have an ICU bed available for her to go to after.) Visiting hours are up to 8pm, so I hope to see her post-op tomorrow evening (even if she's still out for the count) and will leave an update later.

"Hubby".

My bags are packed…

…and I’m ready to go. Not quite leaving on a jet plane you understand – my car just can’t go that fast, but you get the idea.

I don’t really know what to say now apart from the time has come for it all to happen! I called the hospital – they have a bed so all I have to do is turn up at the hospital and do as I’m told until they let me come home. I know you think I’ll never do as I’m told, but I want to be sensible too – quicker recovery times and all that…!

So, I’ll be back on line as soon as I possibly can (just try and keep me away from the PC – not easy as hubby (& others too) will tell you) – and I’ll get back to updating all the juicy stuff then. In the meantime, hubby hopes to be able to do daily updates just so you can see how I’m doing – please leave him some nice comments, he’s going to need serious cyber hugging!

One last thing – Kat over the other side of the pond is being sliced and diced the day after me – so – Good Luck Kat! - we’ll be a couple of fine straight gals soon…

The waiting continues….

Well, here I am and if all goes well tomorrow at this time I will be sitting on a bed in some kind of ancient NHS ward in my (Victorian) hospital and probably wondering what I have let myself in for and where the nearest exit is! I still remain remarkably calm although I don’t have any fingernails left – nope, you’re wrong, it’s just that I cut them last night – (please note the following formula).
Long nails going into hospital + 2 weeks growth = some long bendy ones a-la Lo-pan in Big Trouble in Little China + lots of broken ones.

In no time at all I will be transformed into some kind of bionic robot type wonder woman able to leap tall buildings with a single bound (am I mixing up my superheroes here?)...........

Anyway, I have to say that I am by now getting the odd frisson of nervousness (great word frisson!) Actually, I’m not even sure that frissons apply to nervousness, just excitement and that is absolutely not what I am feeling! Mostly, they are all about what I have forgotten – you know, like that thing when you’re halfway to the other side of the country and wonder if you turned off the gas or shut the front door. Today I have been out and bought bendy straws ‘cos I forgot earlier and remembered that washing without a towel (well drying yourself anyway) is not good – directing the hand dryer to bits of my anatomy whilst wheeling a drip and creaking around the place in 101 stitches just doesn’t seem right – I’d rather go smelly (eew!). Anyway, I have now packed a towel so that’s sorted. I am also going to have to re-pack my bag at some point (and no, not to check that everything is in it that’s on my list) but because I went out today and fell prey to buying a new bag (well, my stuff has been in a carrier bag so I think it’s legit) – I’ll leave you all to guess the colour….

That’s me done then – just sitting around on my ample behind now and waiting to go in. - BTW - I could tell this smilie was me ‘cos the little legs don’t touch the floor! (You may have spotted I've had fun with my smilies today too!)

Just want to say a big thank-you to all of you who have sent messages and especially to those who’ve offered support and help to hubby. Big hugs all round....

Post surgery activities

I found this webpage with a great list of things that you can and can’t do after scoliosis surgery and when you can and can’t do them:

Post Surgery Activities

I’m amazed that I will be able to play tennis and baseball – it sounds like a tampax advert – you know, the “with tampax you can rollerblade” – strange, I couldn’t before! It’s nice to think that I will be able to have sex months before being able to do any hoovering (I will be quite happy if that turns into years as I find hoovering a real chore and that’s when I don’t move the furniture and only do the middle of the room!) I’m sure though, that I shall be itching to do a bit in the garden months before I am able. I guess my gardening activities will have to be limited to sitting on my swing seat, reading and sipping a nice chilled drink this summer. I know its months away but somehow that still sounds really good.

Anyway, to be serious about this, it’s really great that this list exists – before surgery you just have no idea of how long things will be restricted and it gives you some kind of general idea although it’s bound to vary from person to person. I guess I will just have to add my own dates here, as I go along…

Why am I still so calm?

I have no idea why I am still so calm about all of this when there are just so few days to go now. It’s only in these last few days that I can get all those hundreds of things done that I need to - right? Well, wrong! I have no idea why it is, but I guess I am just ready for this now. Of course, I will never be ready in the way that you are for an emergency operation (please see the entry regarding surgery with a spoon) as while you are still leading a relatively normal life you have to wonder how necessary it is to get this done - especially this particular week! (Actually I’m sure my life is in no way normal, but that has nothing to do with my scoliosis….)

I think the length of time that the NHS keeps you waiting for surgery helps in some ways. Firstly you get enough time to get all the information you need to make an informed decision and to prepare mentally & physically (getting fit, eating well, taking vitamins etc). Next comes the time when you get fed up with all the waiting (completely unnecessary!) and then when the date finally comes through you are so relieved that you don’t have to answer the query of “when”(?) over and over that its worth doing just for that. (Gosh doesn’t that sound flippant!). Seriously, if you get to pick a date, I would think that about 6 months would be about perfect (- there, you’re perfect Lynne!). It’s enough time to get sorted and not so long that you get fed up with waiting.*

There are a couple of other things that make it easier to be calm too. Firstly, I have had a few operations before – I know that the anaesthetist will probably make me count backwards from 10 (and I’ll only get to 7 however hard I try) and I know that hospital food is ... ummm interesting. I know things hurt but it gets better and I know that inevitably yikky stuff goes on too (but I won’t gross you out just yet – wait for my post op reports!). I also know that the doctors are experts (because it’s their job to be) and that nurses are nurses because they care. They will do their best for me because no-one goes into work in the morning (whatever their job) and goes “I think I’ll just do a really bad job today because I feel like it”. So, as far as the operation and the hospital go, I have nothing to worry about and no reason not to be calm. Oh, sure I know there are risks, but there are busses on the roads too…..and I haven’t been run over yet!

All the other stuff there is to get not calm about, well, most of that is overcome by simply being prepared. I already bought my new nightie and dressing gown and I have stockpiled my magazines to take. I have been hoarding my small change all week and setting it by for the pay phone – I have puzzle books and pens and all the stuff on my list – boring but necessary! Oh yes and hey, I’m a pretty pragmatic person, if I forget anything or something new comes along then I’ll rise to that challenge when it comes. You can’t do more than go into hospital prepared for the stay and comfortable with your decisions – all that remains then is to let everyone else get on with their jobs and life will go on around you.

So there you go, I feel fine. My only real concern is hubby and how he will cope as he’s the one who will be doing the worrying. I shall just be reacting when they poke me, but he’s the one who has to do the cat feeding, driving, blog updating, laundry, cleaning, cooking, going to work, worrying (did I say that already), etc, etc. Gosh, maybe someone should tell him what he’s let himself in for ……..and send him regular hugs – he didn’t get a cuddly dog for Christmas after all!

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*Another point about the waiting is that it gives you the time to do something special to look back on while you’re recovering – you could take a dream trip or even have a weekend in Bognor Regis if that’s what floats your boat….

Things I shall miss...

As the time gets closer and closer, I wonder more and more about the things that I shall miss while I am recovering. I did even think of making a list of them for some completely insane reason. What did I think I might do with such a list(?), tick things off day by day – oh yes, I’m missing that today, oh and yesterday I missed that! This of course all makes me sound like some kind of closet list maker- (in fact, those people who know me best will tell you that actually there is nothing closet about my avid list making (hee hee!)). Anyway, I have resisted the urge to do so (so far) but there are some things I am sure to miss.

I know I am going to miss red wine (and other booze too I expect) as I will be good and not drink to excess while recovering. This will be:

• a) because I will be taking vast numbers of narcotics (with any luck) and it is not a good idea to mix these with alcohol (as I discovered one New Years Eve when I was young and foolish) and
• b) because I think maybe it would not be too good for my fusion and its rate of healing. And of course there is also
  
• c) and that is that if I get drunk and fall over I might break a rod or something…

I’m sure I will miss it, but I’m not actually too bothered – after an extended period on painkillers that really don’t go with alcohol a few years ago, I spent quite some time being very sober (although as you may have guessed, not upright). It was OK, I still had fun when I went out and I particularly enjoyed watching all the other drunken folks around the place making idiots of themselves. The downside was of course that I was always the designated driver…

This brings me on too the other thing that I am really really going to miss.
I am really really going to miss driving. I love driving, I like driving fast and I like driving far. I am not a complete lunatic behind the wheel, unlike some of my friends (you know who you are!) but still I like to have fun on country roads and (somewhat unusually) love motorway driving.* Its just as well that I do like motorway driving as motorways send Hubby to sleep – it doesn’t matter which seat in the car he is in, all send him to sleep equally. (I don’t actually mind him sleeping in the car but I find it a little disconcerting when the driver starts snoring, so I prefer to do the motorway driving myself.) For some reason I like all that eating up the miles whilst listening to some suitable driving music and seeing how many unusual vehicles are on the road today (wow a Sherman tank and a DB5 both on the same stretch of road?!!). OK, OK - I admit it - I am odd, I know this and I am sure that you’ve realised it too by now!

Anyway, these two things I shall miss; putting any more down will make it suspiciously like a list so I will stop here – please feel free to make your own lists tho’…


*For all you USA citizens, motorways in the UK are like Interstates in the US – if we had Interstates in the UK they would have to be called Intercounties because we don’t have States only counties – but hey, that would just sound stupid. Anyway, for whatever reason we call them motorways!

Did I say I had nice friends?

I guess this post links into the last post of "will I grow?" - and I think my next question is going to be "what will I weigh after surgery?" Now, I know I once read a really irate posting on one of the forums about some poor teenage girl who actually dared to ask how much all this hardware weighed. Now (poor dab) the response she got was that she shouldn’t worry about gaining a little weight in stainless steel when she was having spinal surgery and there are lots of other more serious things in life , but I find that I am also curious about it. Now, don’t get me wrong, I am no sylph like, waif like supermodel type (I wish!) - I’m only 4ft 9” (just a weenie bit short to be a supermodel I think) and weigh (ummmm well, I’m not telling). In fact, the way I usually describe myself is that I’m a bit chunky. So, given these facts, I guess that a few pounds here or there is not really going to make any difference - actually that’s a fib – at 4ft 9” just a few pounds looks more like 20lbs does on a tall person but I digress. I just mean that if you’re a bit chunky, being a bit chunkier wouldn’t actually be the end of the world – it’s not like it’s my career or something (Elle Macpherson I ain’t!). I’m curious though, nothing more – how much does all that stuff weigh – for example, will I sink to the bottom of the swimming pool?! These are all valid questions aren’t they?

Well, back to the title of the posting as I’ve gone a bit off the subject (so what’s new!). One of my particularly nice friends (thanks A!*) suggested that while the surgeons opened me up they could use the time and general anaesthetic to give me a bit of liposuction at the same time. Not realising that he was digging himself into a very large hole by the merest hint of a suggestion that I might need the teeniest hint of liposuction he rashly went on to add the suggestion that maybe I should also get a tuck here or there.
I hasten to add at this point (before you ask) that I did not hit him …!
Still the question remains, will I weigh more or less and will I be thinner round the middle (without liposuction) just ‘cos they stretch me outwards?

Just one final thought (and I promise to stop then) - if I do get taller as a result of this op, then my BMI will go down, even if I weigh the same – how weird is that!

*please note intended sarcasm

Will I grow?

Did I happen to mention that I was short? Well, I am, in fact, it just about describes me. Recently when arranging to meet someone for the first time (no it wasn’t a blind date – I am already married – and therefore if it was, I wouldn’t own up to it!). Well, anyway, did I tell this guy I had to meet that I would wear a red carnation in my buttonhole or that I had dark hair or that I would wear a red jumper (I’d have to buy one, I don’t own one of them), or even that I had a limp? No, I did none of them – I said you’ll recognise me – I’m short and do you know what – he did!

I am officially about 2.75” shorter than when I was 12 years old (and I wasn’t huge for a 12 year old apart from round the middle). So, when they straighten me out will I grow again? That’s a tricky one – immediately you’d think yes – put someone on a rack and they’re bound to get taller – right? Well, not necessarily – if they decided to stand you up at the point in the surgery when they have taken out all your discs you would definitely be shorter. (Actually, I do hope they don’t attempt to stand me up whilst under general anaesthetic and with a big hole in my middle but you never know what will amuse these doctors!) So, if they remove discs, you’re shorter…well, then they stretch you out when they crank your spine over to the rods to straighten it – and that will make you taller. So will I be taller? I’ll be shorter than now at first and then I’ll be taller again (both on the operating table) and I guess it may just all average out to the same as I am right now. Personal stories I’ve heard seem to be that the 6ft people all seem to grow (maybe I’m just jealous here and get fixated on the tall ones so don’t believe anything I’m saying here..) and the rest vary, some do, some don’t. It’d be cool to grow again at this age so I am going to draw a line on a wall somewhere in my house so that when I am home and recovered I can compare, just like you do when you are 6. That’ll be fun!

Can you trust the doctors predictions?

I guess this is a matter for everyone, especially those trying to make up their minds about whether to go for surgery or not. All my life I’ve had a whole bunch of doctors predict all sorts of stuff for me and I have steadfastly ignored most of it! The one prediction that came up time and again was the wheelchair one – you’ll be in a wheelchair by the time you’re 30 then 40 and it just didn’t happen. (I guess I was listening but my stubborn streak wasn’t!) Anyway, last time I had one of those predictions I asked “why will I end up in a wheelchair?” and was told as a very minimum that the pain would be too bad for me to walk by the time I was 40. Well, the pain’s no fun, I’ll grant you that, and I have now passed the 40 mark and yes, I do own a wheelchair. I don’t use it often though so I don’t know if it counts. Another prediction was made that I wouldn’t have children, and while in fact it is true that my only pregnancy went pretty badly wrong so I’ve ended up not having children, I did at least get pregnant.

So does this mean that because these predictions came true(ish) I should believe the doctors. Of course not! Their predictions now (if I don’t have surgery) are pretty horrible with regard to squashed internal organs, slow numbness and paralysis and yet more pain, but why should I believe them when I still don’t use my wheelchair often – they didn’t really get that right, did they? No, I don’t think you can base your decisions on whether to have surgery or not solely on what gloomy future your consultant may happen to paint for you (- and don’t they all do gloomy so well!). Only you can look at your life now and look at your life 2 years ago or 5 years ago or 10 years ago. I look back to some of the things I used to be able to do and realise that I simply can’t do that stuff now. This is a good basis for a decision I think. You have been told!

Wow – I re-read this one and thought it was a bit D&M. Needed to be said tho’ so I’m leaving it in…