Long time no speak, again

[Guest guest]

As seems to be normal these days, I've ended up miles behind and only

just caught up again - so many new faces, it seems! Speaking of new

faces, I'm glad to see that you found your way here Allie - I told you

I don't get here often, so I've only just found out.

Without wanting to stir the controversy any more, I thought it might

be interesting to note that I found the whole idea of the surgeon

being directly in charge of the pain meds a bemusing one! It's just

not how it's done across here - they may well do the initial

prescription while you're in hospital, but actually the pain meds you

wake up with are far more likely to be determined by the anaesthetist.

They will then be tweaked and altered to suit over the duration of

your stay either by the ward staff, or if you're luckier by a

specialist pain control team (it'll be a specialist team for this kind

of surgery in the vast majority of places). They'll discharge you

with up to 1 week supply of painkillers, and beyond that it is up to

your GP or district nurse, or possibly your pain clinic if you were

already attending one. Your GP can contact the clinic for their

recommendations, which may or may not be given (due to the fact that

they'd only need to contact regarding whether to prescribe controlled

substances and the clinic would rightly say that they can't determine

whether they are justified in the given case without seeing the

patient), but they essentially have no further responsibility for, or

control of, your care as regards pain management (the clinic may refer

you for pain management if you are in a lot of pain at follow up, or

may arrange for injections and the like, but do not deal with the drugs).

On a separate note, I'm seeing Mr Webb (hopefully!! assuming he's at

the clinic) on 4th December. I really feel lost - it was clear the

spinal fellow at the last appointment didn't believe me about the loss

of sensation, because it is only specific types that seem to have

gone. Since then however, I've had things such as my husband saying

in a worried tone " you've *got* to get this seen to " - I tend to sit

cross legged on the sofa, but sometimes sit with both legs out to one

side, and was sitting like that reading. He'd crept his hand across

from his side, slow so that I didn't see it coming, and had been sat

there tickling the sole of my foot and I just didn't feel it. But

normally I do have touch sensation, while dull it is there, so the

chances of it being absent on demand are low.

I'm also finding my right knee doesn't " stop " - some days going down

stairs is a hair raising experience, because at each step as I lower

myself to the next, the right knee just kind of keeps going, like the

signals aren't getting to the muscles that counter it (not at all sure

how to explain it). But, the last one I saw said that none of the odd

leg stuff has a mechanical cause and that there is nothing to be seen

on my films (I know that is not entirely true, as I've been told - and

shown! - about central canal stenosis at L4-5, and that I have lateral

recess stenosis at the same level on the right, but nevertheless it

leaves me worried in case he's right, even though I'm fairly sure he

was just useless - and if he is right, what the heck is causing it?)

There's a host of other things, and I'm back to needing petite section

tops for the body not to be massively too long.

I'm pretty sure that Mr Webb won't be the one doing any further

surgery because he's semi-retired, and as much skill and experience as

he has I worry that even if he'd want to do it as he's not operating

so often these days perhaps it would be better for someone who is

doing it more often to tackle something like this. I really want his

opinion though, as a baseline for discussing it with others. I plan

to see the surgeon who was the assisting on my last surgery, and will

probably be fairly keen to go with him as long as he has a good plan.

It might seem odd to be wanting to go back after the poor long term

outcome I've had, but it was always a given that I would need another

surgery - it's just it was expected that the last one would buy me

10-15 good years and I really only got a couple. The reasons for that

though stem back to the damage done by the fsi following the original

surgery. If I'd been 10 years older before getting to the state I

was, I'm pretty sure they'd have fused to the sacrum there and then,

but actually I'm not at all clear that that would have prevented the

stenosis developing, as it was a disease process that had already

kicked off, if you see what I mean. So I guess it's just as possible

that if they'd fused to the sacrum I'd still need something doing for

stenosis now - I'm just lucky like that!

So at the moment plan is to see Mr Webb, order copies of all my images

and notes, and take them off to see other doctors privately. These

will include Mr Cole who was the assisting on my last surgery, and Mr

Harding, who is an all round nice chap (I've corresponded with him a

little in regards to my website, he was the one who initiated the

contact as he wanted cards to give to his patients so they could get

peer support) and has, as it is referred to across here, a " special

interest " in adult scoliosis and long term problems after fusion. He

has the added benefit of being a mere 45 or so miles from home,

whereas the other two are much further, and with a toddler to deal

with that will potentially make a lot of difference.

So, you don't see me for months and then I come back and write a

mammoth epistle!

titch

[Guest guest]

Hi Titch,

Great to hear from you. Sounds like you are on the move once again.

Welcome back. What I really want to know is how's the babe? or not

so babyish anymore? C

>

> As seems to be normal these days, I've ended up miles behind and

only

> just caught up again - so many new faces, it seems! Speaking of new

> faces, I'm glad to see that you found your way here Allie - I told

you

> I don't get here often, so I've only just found out.

>

> Without wanting to stir the controversy any more, I thought it might

> be interesting to note that I found the whole idea of the surgeon

> being directly in charge of the pain meds a bemusing one! It's just

> not how it's done across here - they may well do the initial

> prescription while you're in hospital, but actually the pain meds

you

> wake up with are far more likely to be determined by the

anaesthetist.

> They will then be tweaked and altered to suit over the duration of

> your stay either by the ward staff, or if you're luckier by a

> specialist pain control team (it'll be a specialist team for this

kind

> of surgery in the vast majority of places). They'll discharge you

> with up to 1 week supply of painkillers, and beyond that it is up to

> your GP or district nurse, or possibly your pain clinic if you were

> already attending one. Your GP can contact the clinic for their

> recommendations, which may or may not be given (due to the fact that

> they'd only need to contact regarding whether to prescribe

controlled

> substances and the clinic would rightly say that they can't

determine

> whether they are justified in the given case without seeing the

> patient), but they essentially have no further responsibility for,

or

> control of, your care as regards pain management (the clinic may

refer

> you for pain management if you are in a lot of pain at follow up, or

> may arrange for injections and the like, but do not deal with the

drugs).

>

> On a separate note, I'm seeing Mr Webb (hopefully!! assuming he's at

> the clinic) on 4th December. I really feel lost - it was clear the

> spinal fellow at the last appointment didn't believe me about the

loss

> of sensation, because it is only specific types that seem to have

> gone. Since then however, I've had things such as my husband saying

> in a worried tone " you've *got* to get this seen to " - I tend to sit

> cross legged on the sofa, but sometimes sit with both legs out to

one

> side, and was sitting like that reading. He'd crept his hand across

> from his side, slow so that I didn't see it coming, and had been sat

> there tickling the sole of my foot and I just didn't feel it. But

> normally I do have touch sensation, while dull it is there, so the

> chances of it being absent on demand are low.

>

> I'm also finding my right knee doesn't " stop " - some days going down

> stairs is a hair raising experience, because at each step as I lower

> myself to the next, the right knee just kind of keeps going, like

the

> signals aren't getting to the muscles that counter it (not at all

sure

> how to explain it). But, the last one I saw said that none of the

odd

> leg stuff has a mechanical cause and that there is nothing to be

seen

> on my films (I know that is not entirely true, as I've been told -

and

> shown! - about central canal stenosis at L4-5, and that I have

lateral

> recess stenosis at the same level on the right, but nevertheless it

> leaves me worried in case he's right, even though I'm fairly sure he

> was just useless - and if he is right, what the heck is causing

it?)

> There's a host of other things, and I'm back to needing petite

section

> tops for the body not to be massively too long.

>

> I'm pretty sure that Mr Webb won't be the one doing any further

> surgery because he's semi-retired, and as much skill and experience

as

> he has I worry that even if he'd want to do it as he's not operating

> so often these days perhaps it would be better for someone who is

> doing it more often to tackle something like this. I really want

his

> opinion though, as a baseline for discussing it with others. I plan

> to see the surgeon who was the assisting on my last surgery, and

will

> probably be fairly keen to go with him as long as he has a good

plan.

> It might seem odd to be wanting to go back after the poor long term

> outcome I've had, but it was always a given that I would need

another

> surgery - it's just it was expected that the last one would buy me

> 10-15 good years and I really only got a couple. The reasons for

that

> though stem back to the damage done by the fsi following the

original

> surgery. If I'd been 10 years older before getting to the state I

> was, I'm pretty sure they'd have fused to the sacrum there and then,

> but actually I'm not at all clear that that would have prevented the

> stenosis developing, as it was a disease process that had already

> kicked off, if you see what I mean. So I guess it's just as

possible

> that if they'd fused to the sacrum I'd still need something doing

for

> stenosis now - I'm just lucky like that!

>

> So at the moment plan is to see Mr Webb, order copies of all my

images

> and notes, and take them off to see other doctors privately. These

> will include Mr Cole who was the assisting on my last surgery, and

Mr

> Harding, who is an all round nice chap (I've corresponded with him a

> little in regards to my website, he was the one who initiated the

> contact as he wanted cards to give to his patients so they could get

> peer support) and has, as it is referred to across here, a " special

> interest " in adult scoliosis and long term problems after fusion.

He

> has the added benefit of being a mere 45 or so miles from home,

> whereas the other two are much further, and with a toddler to deal

> with that will potentially make a lot of difference.

>

> So, you don't see me for months and then I come back and write a

> mammoth epistle!

>

> titch

>

[Guest guest]

Definitely not so babyish, less so by the day it seems at times. He's

just over 18 months now, and has gone from one word at around 1 (miaow

- I do believe he thought for a while that he was a cat, being as he

was small, 4 footed and low to the ground ;o) to having over 30 now.

We've just had the first two-worder as well, very amusingly it was

" Daddy, NO! " (daddy did kind of beg for it though, he knows using

toys as a footrest does not impress ) For anyone who wants a

look, there is lots of goodness here:

http://www.flickr.com/photos/oojackapivvy/sets/72157604967431633/

There's also a recent picture of me here:

http://www.flickr.com/photos/oojackapivvy/2849044846/ Not the most

obvious (it's actually much more noticeable in a print photo I have,

taken when was about 10 weeks old), but you can see I'm

leaning forward again *grr*

It's all complicated. Having makes me want to put it off

absolutely as long as I possibly can, but on the other hand we'd like

to have another, and that really needs to wait until I've had the next

fusion and see how I am then - which as I'm 35 and ovulate once in a

blue moon means it's better not to wait too terribly long in case even

the wonders of Clomid can't make it all work (that said, was a

wonder, all things considered, and happened without medical

intervention of any kind). Still, December isn't all that far away

now, so fingers crossed I do get to see the man himself.

If and when I get copies of all my notes and images, I'll hopefully be

able to put up the before and after photos. It'll definitely be

interesting to compare my current posture with the before and after

and see which it's closer to!

titch

>

> Hi Titch,

> Great to hear from you. Sounds like you are on the move once again.

> Welcome back. What I really want to know is how's the babe? or not

> so babyish anymore? C

[Guest guest]

Titch,

is so cute, what beautiful pictures! England is just such a beautiful backdrop, I think it's the greens against the stone, such a contrast that makes things so lovely. My best friend here in the states is from England, and she taught me to garden English style, my yard always makes for comments since everyone else does the very uniform gardening, mine is very cottagy, and now in it fifth year is climbing and going everywhere. I do hope someday to get there and see gardens first hand, till then it will have to be in magazines.

Whether to wait on surgery, or go for it before the next baby, either way has it's bonuses. I was a mess after my first baby, when flatback really set in for me, but went on to have two more. At that time I was making the rounds to doctors, and since none of them really knew what was going on, and I got the live with it montra, and I didn't want it to stop my life, I went for the two pregnancies. Somewhere between child two and three I saw a doc who thought I needed to have my Harrington out, clearly had no plan and was just guessing, but told me to wait on any surgery till I had completed my family. His opinion only. I was lucky that pregnant I was wonderful, I think how the weight was distributed, I had no back pain pregnant, and would have stayed pregnant I felt so good if it didn't result in more kids. I told Kumar this and he said he's heard it before, doesn't make sence, you think with the extra weight and carrying a child it would be bad, for me it was the opposite. Not to say that labor and delivery were easy, mine were all difficult, two C sections after long labors, and one V back with the Chicken Poxs no less.I didn't get revised till my kids were in elementary school and beyond, and I sure wish that I could have their young years back with the body and stance I have now, feel like pain and disability robbed them of an active Mom. Water under the bridge, as I tried for years to find answers to what was wrong, saw some 20 doctors over 15 years, and went from 1984 till 2000 knowing something was awfully wrong, but no one had an answer. I tried, all I could do, and was thankful when I finally got to Kumar and got diagnosised. I know people have babies after revision, we haven't seen much of it I believe just because by the time most of us have flatback kick in with a venegance we are in our late thirties, early forties. I just don't know what roll pregnancy would play in the evolution of how a revision would hold up. Live and learn I guess. I do know it would probably be really tough to go through such a surgery with really small kids, could speak to that. I guess there is no really good answer except to do what feels right to you, and what your doc advises. Children are a blessing no matter when they come, mine adjusted to Mom's difficulties. I do know that my three post Harrington Rod surgeries were big moments in their lives, all three kids have written about them in papers for school. I don't know if this has helped, or I just muddied it up, but I think if you didn't go for the second child you want, it would be a life long regret, revised or not. I wish you much luck in your decision.

Colorado Springs

[ ] Re: Long time no speak, again

Definitely not so babyish, less so by the day it seems at times. He'sjust over 18 months now, and has gone from one word at around 1 (miaow- I do believe he thought for a while that he was a cat, being as hewas small, 4 footed and low to the ground ;o) to having over 30 now. We've just had the first two-worder as well, very amusingly it was"Daddy, NO!" (daddy did kind of beg for it though, he knows usingtoys as a footrest does not impress ) For anyone who wants alook, there is lots of goodness here:http://www.flickr.com/photos/oojackapivvy/sets/72157604967431633/There's also a recent picture of me here:http://www.flickr.com/photos/oojackapivvy/2849044846/ Not the mostobvious (it's actually much more noticeable in a print photo I have,taken when was about 10 weeks old), but you can see I'mleaning forward again *grr*It's all complicated. Having makes me want to put it offabsolutely as long as I possibly can, but on the other hand we'd liketo have another, and that really needs to wait until I've had the nextfusion and see how I am then - which as I'm 35 and ovulate once in ablue moon means it's better not to wait too terribly long in case eventhe wonders of Clomid can't make it all work (that said, was awonder, all things considered, and happened without medicalintervention of any kind). Still, December isn't all that far awaynow, so fingers crossed I do get to see the man himself.If and when I get copies of all my notes and images, I'll hopefully beable to put up the before and after photos. It'll definitely beinteresting to compare my current posture with the before and afterand see which it's closer to!titch>> Hi Titch,> Great to hear from you. Sounds like you are on the move once again.> Welcome back. What I really want to know is how's the babe? or not> so babyish anymore? C

[Guest guest]

Hi Titch,

He is adorable! I don't know I was in so much agony after the first

there was no way I could carry another child so I made due until

he was 6 then had surgery. I guess, it would go by what you can

endure. I would have loved to have had another child.

C

> >

> > Hi Titch,

> > Great to hear from you. Sounds like you are on the move once

again.

> > Welcome back. What I really want to know is how's the babe? or not

> > so babyish anymore? C

>

[Guest guest]

Titch,

What an absolute DOLL! and so worth it. I hope you are able to have

another.

Kathy

> >

> > Hi Titch,

> > Great to hear from you. Sounds like you are on the move once

again.

> > Welcome back. What I really want to know is how's the babe? or not

> > so babyish anymore? C

>

[Guest guest]

Kathy's right, sweet is a total heart-breaker-to-be. Why is it

so often the boys who get those natural Maybelline lashes?!

Good hearing from you, Titch, and good luck with the surgeon visit.

Sharon

txbluebelle wrote:

Titch,

What an absolute DOLL! and so worth it. I hope you are able to have

another.

Kathy

> >

> > Hi Titch,

> > Great to hear from you. Sounds like you are on the move once

again.

> > Welcome back. What I really want to know is how's the babe?

or not

> > so babyish anymore? C

>

[Guest guest]

I think what I found with pregnancy was that it kind of " held my back

up " - literally, the difference once there wasn't the huge bump there,

physically keeping me more upright, I definitely felt much more bent

over. Of course, it did totally mess up my stomach as I got diastemis

recti (separation of the stomach muscles all the way down), and I

suspect that this has not helped my back - I'm still significantly

larger around the tummy even though I'm no heavier (and as I'm more

muscular again from hefting around, and have easier to find

ribs, it's really not fair my belly is still that much bigger than it

used to be *lol*)

I think the biggest concern I have about another pregnancy is my poor

SI joints. I had bad SPD while pregnant and from 15 weeks was using

crutches to get around - I was using a walking stick before that, but

found that the one sided nature of it meant once the SPD kicked in

that I just kept setting the joint off. I still use crutches now to

walk any distance if I don't have the buggy to lean on instead. The

SI joints are actually the main concern I have with the idea of having

another post re-revision - I have no doubt the spinal hardware will

stand up to it, and I fuse well. I expect that they'll have to bolt

to the ilia on both sides because I'm big, and actually I don't think

I'd let anyone near me who wasn't going to (on the left especially)

because of the ongoing SI issues. All of that said, it should all be

a lot better from being upright anyway.

Don't worry, you haven't confused anything, I'm plenty good enough at

doing that to myself ) I'm just getting twitchy because it's count

down to appointment time, and my head keeps racing around what it

would be if it's not mechanical issues even though I'm sure that

accounts for a lot of it. I need to go talk to my GP (being nagged by

a friend now, after talking with her about it) to see if I can be

referred for glucose testing, in case I'm undiagnosed diabetic. We

don't think I am, especially as I could not have been for long enough

to cause diabetic neuropathy (my glucose was raised a little in the

last trimester, but not enough that they felt the need to worry at

all), but nevertheless it's something that would be good to rule out

just so I can move forward with any other investigations for other causes.

titch

[Guest guest]

It's not fair, is it? My brother has them as well, and he's got the

same sort of dark golden blond that is my natural (well, pre-grey and

the grey being the reason for the dye) hair colour, so it's not just a

colouring thing. Still, that's what good mascara is for! (Random

thing, there's a mascara advertised across here with Eva Longoria

modelling it, looking like a drag queen because of the lash inserts,

shocking thing to do to her!)

Oops - got to run, it's morning and I hear getting up!

titch

--- In , Sharon Green

Why is it so often the boys who get those natural Maybelline lashes?!