Long time no speak

[Guest guest]

Hi chaps )

Hope this message finds you all well, whatever stage of the journey

you're at. I'm sorry I've been away for so long and now return with

such a mammoth post. It's been ages since I posted here -

is adorable and worth every moment, but also takes almost every

moment, so time to keep up with anything beyond keeping my site

afloat is at a major premium, so I really haven't kept up here at

all I'm afraid.

Anyway, as you might unfortunately expect, I'm posting now because

of having had an appointment to follow up the facet blocks I had

done in August - all 4 joints remaining at the bottom were treated.

Basically, it took about 50% of the pain away for around a fornight,

at which point it leapt back up to 75% and then within a month was

back to a good 95% of what it had been before.

This Monday I had the very scary experience that I was walking for

the bus, and about half way there from my house felt something move,

or give and just simply couldn't walk for the pain. Stuck as I was,

with not enough money for a taxi, and no car seat for in any

case as he was just in the buggy, I came very close to ringing my

husband to call him home from work to rescue me. If he wasn't an

hour or more away, I think I would have done, but as it was I

managed eventually to work myself into a contortion that allowed me

to bear enough weight on my left leg to lurch on, and once I was

able to get moving at all, the worst of the pain slowly went,

although I'm still creaking now.

Other than that, I've keeled way off to the right and rotated quite

significantly, and am once again cast forward several inches. As it

stands I don't anticipate being able to return to work at the end of

my maternity leave, luckily my husband is supportive in this in that

he doesn't think I should return even if I'm able, as between

commuting costs (plus the sheer time, as it's about 4hrs per day in

the office) and child care costs I'll be working 17.5hrs, plus

commuting a further 8, for around £100 per month which for the sake

of my health he quite agrees we'd do better to find a way of living

without. Even so, I don't like being pushed into it, especially as

circumstances mean I'm very unlikely to be able to work in the field

again, which significantly reduces future wage potential if/when I

am able to work again.

Soooooo. We pretty much knew that options are exhausted, but it's

still been quite a shock somehow that the only thing offered is that

I'm written up for another MRI and a CT scan so that they can

determine what to do surgically, and we're looking at surgery in as

soon as the NHS can get there - realistically, the turn around on

that is going to be about 10 months minimum as it'll be 3+ to get

the scans, then 6+ weeks to get the follow up appointment with the

surgeon, then about 6 months wait for surgery. This time it will

need to be a 2 stage procedure, but yet again the first surgery

raises it's ugly head - the fact that I had not just an anterior,

but such a massive one (15 inches of scar to get out 2 discs!!), and

now have had a caesarian too, means that it's going to be extremely

difficult to do another anterior procedure even if I wasn't also

significantly obese. It's because of that rotten first surgery that

the last revision didn't involve an anterior, but this time as it'll

be all the way to the sacrum, they have to dig the discs out

somehow. I guess they're hoping the MRI will reveal more, but the

doctor I saw looked pretty daunted and worried by it all - I think

she's very glad she's not the one who will be dealing with the mess!!

I've been told to lose weight - this will be much easier said than

done, given that it's so damn difficult to exercise and with PCOS I

find it very hard to lose weight through diet. The last time I

really made an effort, it took me 8 weeks to lose 4 pounds, so given

that I need to lose 70-80, I have no idea how I can possibly lose

enough weight in a sensible enough space of time (or indeed how I

can lose that much at all), so I'm at a loss there.

My poor husband is just a withdrawn bundle of misery again,

especially as this time round he's not just afraid of being left on

his own, but of being left on his own with Will. Will really

complicates matters - if we didn't have him, I'd definitely get the

surgery done ASAP, but with him I find myself really disinclined. I

know I'm on a slow decline, but hope at least that it will be

several years still before I need a wheelchair to get around. We

have no family or friends who can help anywhere near us, so I can't

imagine how we can cope with me having this surgery until Will is

older, ideally potty trained.

On the other hand, I'm getting increasing foot drop (I'm *hoping*

that the epidural steroid injection I requested to be written up for

will reduce this again, but can't bank on it), and my balance is

getting worse and I have to wonder how long before it's

uncorrectable. My left sacro iliac joint is seriously shot, it's

painful and hypermobile, so that's another fear - if I'm fused to

the sacrum, and they don't adequately stabilise my pelvis, I

honestly think I could go straight from surgery to wheelchair, as

the kind of pain I get in there when it's bad leaves me quite

literally unable to walk.

All in all, it's a bit of a disaster! About all I have come up with

is that I will be getting at least one second opinion, and

discussing very carefully the problems with the SI, and also how

long they think I can afford to wait. What we're currently hoping

is that if I can put it off, I'll decide on a surgeon and then touch

base every 6 months or so until I decide it's time to go ahead with

it, but I don't know if we'll be able to work like that with any of

them. Mr Webb is already semi-retired, so that's another factor to

consider in the whole mess.

Basically, I'm just lost at the moment, so any thoughts, opinions,

suggestions or whatever are very welcome )

Again, sorry to only return for a problem (

titch

[Guest guest]

Titch,

It's so nice to hear from you again! Since you've been gone, I have

gone ahead and had revision surgery done, with my kids being ages 2

and 3. It's difficult but doable. I was in the hospital for 2

weeks, and in a rehab hospital for 4 weeks. So I was home at about

6 weeks post-op. I was so fortunate that my mom took the summer off

of work to watch the kids while I was gone, and she continued to

watch them the first week that I came home. I have been watching

them on my own fulltime ever since then (7 weeks post op).

I am currently in a wheelchair about 80-90% of the time due to

difficulties with multiple sclerosis, and virtually my kids & I are

homebound except for doctor appointments and short family trips.

My personal suggestion with your son, is if at all possible to

definately wait AT LEAST until he is walking, but potty training

would be easier - I'm so sorry that I can't remember how old he is

right now, but it will be impossible for you to pick him up for a

while afterwards (as I'm sure you already know). I was on a 5-lb

limit until 3 months post-op, then it was changed to 20-lb - but not

to be a " regular basis " lifting weight, just once in a while as

necessary. If you can wait until he is potty-trained, it will be

easier, but not impossible. My younger daughter wasn't trained, but

shortly after I returned home she just decided to do it herself

(lucky me!!), and except for nights is doing really well. Changing

diapers has been really challenging, but if I was able to stand it

would be a lot easier, because she can climb up on the couch, bed,

or table all on her own.

Because of my disabilities, my kids have always been very self-

sufficient - throwing away their own diapers as soon as they could

walk steadily, getting their own sippy cups out of the fridge,

walking themselves everywhere, etc. My honest advice is that if you

can get your son used to walking himself everywhere it will make

your life easier too. I was physcially unable to pick up my kids

while standing when my younger was only a few months old, much less

walk while carrying them, so actually from the time they could

crawl, I expected them to crawl down the hallway to their cribs,

crawl to their highchair to eat, etc. I would imagine that if you

are able to do something similar it would save you a lot of pain

right now, and make things much easier on you & him post-op because

he won't " expect " you to be able to cater to his every whim.

So please know that it's not easy with little ones at home, but it

CAN be done, especially with a lot of pre-planning. If you can get

any help at all - community groups, co-workers, church, friends,

family, neighbors - it would be a huge asset. If not, then it's

still able to be done, just with more difficulty. And my other

advice is to try working on making your son as independent as

possible as early as you can.

I truly hope that you're able to wait long enough to get your son to

get to an age where things will be easier on you all. Sorry you

have to go through this!

>

> Hi chaps )

>

> Hope this message finds you all well, whatever stage of the

journey

> you're at. I'm sorry I've been away for so long and now return

with

> such a mammoth post. It's been ages since I posted here -

> is adorable and worth every moment, but also takes almost every

> moment, so time to keep up with anything beyond keeping my site

> afloat is at a major premium, so I really haven't kept up here at

> all I'm afraid.

>

> Anyway, as you might unfortunately expect, I'm posting now because

> of having had an appointment to follow up the facet blocks I had

> done in August - all 4 joints remaining at the bottom were

treated.

> Basically, it took about 50% of the pain away for around a

fornight,

[Guest guest]

Dear Titch,

Here I was believing that you were doing better than ever..hence you

silence here! Kidding. Really I figured that the " mommy " thing was

taking whatever free time you used to have to write your wonderful

posts. I am very sorry to hear you had such a scary outing on Monday

and that things have degenerated so quickly. Blast!

I think and Lori are the two members that underwent revision

with very young children/toddlers and based on their experiences it

does seem like you are right to consider how you will manage the

physical aspects of their care while you are out of commission. On

the other hand are there not risks that the nerve damage will become

permanant if it is not addressed fairly soon? Its a conundrum.

I know your health care system is completely different from the U.S.,

but I am glad to hear you will persue more than one opinion. Is

DrWebb who you would like to have do the surgery? Will he even take

you on as a surgery patient if he is semi-retired? Or can he set you

up with whomever he thinks can handle your challenging case?

I really wish I could offer more than just my support and concern. I

am sorry that you didn't get at least one year to enjoy your baby

without being distracted by pain and disability.

I am sure we would all love seeing a picture of if you want

to put one in your photo album!

Take Care, Cam

[Guest guest]

Wow - that's really encouraging to know that you've managed with

your kids from so soon post op! How are things now - I hope you're

still glad that you went ahead with it?

It's really good to have confirmation that I'm thinking along the

right lines here in terms of trying to wait. Will's size won't help

matters as he continues to be large - he passed 20 lbs by 6 months,

and although lean is heavy just because of his length. He's

currently trying to crawl, which as I'm evil amuses me no end - he

usually ends up going backwards, so whinges, whines and grumbles the

whole way as he gets further and further from what he wants! I

still can't believe how wonderful kids are, this from someone who

never found any interest in anyone elses, and is now considering a

career with kids if/when I'm well enough to work again ;o)

titch

>

> Titch,

> It's so nice to hear from you again! Since you've been gone, I

have

> gone ahead and had revision surgery done

[Guest guest]

I'm already Mr Webb's patient as he was the main surgeon on the last

revision, so there's no problem with getting on his list, just that

he may be forced to retire as his contract has to be renewed by

negotiation each year now that he's past standard retirement age. I

was told by the porter that wheeled me down for my facet blocks that

he really does not want to retire, but the trust that runs the

hospital is looking to save money and of course he is rather

expensive, so we shall see. I think it's a given that if I try to

avoid having it done next year it will not be him who does it, and

I'll be handed over to another surgeon there - quite possibly Mr

Grevitt (who I do know is a good chap as he did a phenomenal surgery

for a nasty Scheuermann's kyphosis with a 70 degree scoliosis curve

over the same vertebrae - which is a very unusual combination

apparently - for a guy on my forums).

I'm planning to get copies of my xrays and trot off to see Mr Cole,

who was the assisting surgeon on my last surgery. The current

problems are in no way the fault of that surgery, and I know that Mr

Cole already has a good understanding of the problems caused by my

disastrous original surgery, and who better to know what

complications may be related to the last one? ) I'm thinking also

to see Mr Harding, who is a surgeon close by to me. I don't know

anyone who has had revision surgery with him, but I do know that he

has an interest in it and seems to be an extremely nice guy.

Frenchay Hospital is only about 40 miles away as well, which would

be a bit of a novelty as Mr Cole is now even further away in

Sheffield, not that that really matters.

I won a photoshoot a few months back, at a London studio - it was

done at the end of September, and was really great fun. I've

uploaded several of the images from it to a new album on here )

One of these days I'll get around to updating www.binary-9.com with

more photos, but that needs more time than I currently seem to have,

and I don't think there are any new photos since I last posted the

link, which seems an aeon ago!

titch

>

> Dear Titch,

>

> Here I was believing that you were doing better than ever..hence

you

> silence here! Kidding. Really I figured that the " mommy " thing was

> taking whatever free time you used to have to write your wonderful

> posts. I am very sorry to hear you had such a scary outing on

Monday

> and that things have degenerated so quickly. Blast!

[Guest guest]

Hi, Titch!

It's so good to hear from you again. I only wish it were under more favorable circumstances! What a disappointment, not to have gotten more good time out of that first revision. I so enjoyed all your wedding and baby pictures, it's hard to think of you being in this sort of condition yet again.

I don't know how helpful this comment is, but it sounds like you need to get on with this as soon as possible. By the time you make it to the O.R. Will should at least be walking, right? I'm a big fan of "Where there's a will there's a way", and oh, dear, I didn't mean to be punny! I just think think it's going to be hard anyway, so at least surgery, done sooner, might give you more quality years with your son. And of course, it may save you from nerve damage. Plus, a "go for it" approach may increase your chances of having Mr. Webb as surgeon again.

I'm really sorry you're going through this, and wish you the best, whatever you decide.

Sharon

[Guest guest]

Titch,

Those are fantastic shots of you all...what luck that you won the

contest right at the perfect time for those " beautiful baby " shots you

will cherish them for a lifestime. You and 2C look just as precious!!!

I know how crazy the early days of parenting are but please let us know

how things develop with your back...we will be rooting for you.

Take Care, Cam

[Guest guest]

Hi Titch!! Sorry to hear you are having such a hard time with your

back. I hope that gets all settled out for you soon. Little

is so cute!! Thanks for posting the pictures of all three of you. He

looks like a little handful--but a cute, wonderful one!!! Children

are wonderful, especially when they are your own. I always liked

them, wanted one, but until they are born and yours, it's very

different. I have two wonderful daughters ages 17 and 20, and they

make me very proud!!

Carol V.

>

> Hi chaps )

>

> Hope this message finds you all well, whatever stage of the journey

> you're at. I'm sorry I've been away for so long and now return

with

> such a mammoth post. It's been ages since I posted here -

> is adorable and worth every moment, but also takes almost every

> moment, so time to keep up with anything beyond keeping my site

> afloat is at a major premium, so I really haven't kept up here at

> all I'm afraid.

>

> Anyway, as you might unfortunately expect, I'm posting now because

> of having had an appointment to follow up the facet blocks I had

> done in August - all 4 joints remaining at the bottom were

treated.

> Basically, it took about 50% of the pain away for around a

fornight,

> at which point it leapt back up to 75% and then within a month was

> back to a good 95% of what it had been before.

>

> This Monday I had the very scary experience that I was walking for

> the bus, and about half way there from my house felt something

move,

> or give and just simply couldn't walk for the pain. Stuck as I

was,

> with not enough money for a taxi, and no car seat for in

any

> case as he was just in the buggy, I came very close to ringing my

> husband to call him home from work to rescue me. If he wasn't an

> hour or more away, I think I would have done, but as it was I

> managed eventually to work myself into a contortion that allowed me

> to bear enough weight on my left leg to lurch on, and once I was

> able to get moving at all, the worst of the pain slowly went,

> although I'm still creaking now.

>

> Other than that, I've keeled way off to the right and rotated quite

> significantly, and am once again cast forward several inches. As

it

> stands I don't anticipate being able to return to work at the end

of

> my maternity leave, luckily my husband is supportive in this in

that

> he doesn't think I should return even if I'm able, as between

> commuting costs (plus the sheer time, as it's about 4hrs per day in

> the office) and child care costs I'll be working 17.5hrs, plus

> commuting a further 8, for around £100 per month which for the sake

> of my health he quite agrees we'd do better to find a way of living

> without. Even so, I don't like being pushed into it, especially as

> circumstances mean I'm very unlikely to be able to work in the

field

> again, which significantly reduces future wage potential if/when I

> am able to work again.

>

> Soooooo. We pretty much knew that options are exhausted, but it's

> still been quite a shock somehow that the only thing offered is

that

> I'm written up for another MRI and a CT scan so that they can

> determine what to do surgically, and we're looking at surgery in as

> soon as the NHS can get there - realistically, the turn around on

> that is going to be about 10 months minimum as it'll be 3+ to get

> the scans, then 6+ weeks to get the follow up appointment with the

> surgeon, then about 6 months wait for surgery. This time it will

> need to be a 2 stage procedure, but yet again the first surgery

> raises it's ugly head - the fact that I had not just an anterior,

> but such a massive one (15 inches of scar to get out 2 discs!!),

and

> now have had a caesarian too, means that it's going to be extremely

> difficult to do another anterior procedure even if I wasn't also

> significantly obese. It's because of that rotten first surgery

that

> the last revision didn't involve an anterior, but this time as

it'll

> be all the way to the sacrum, they have to dig the discs out

> somehow. I guess they're hoping the MRI will reveal more, but the

> doctor I saw looked pretty daunted and worried by it all - I think

> she's very glad she's not the one who will be dealing with the

mess!!

>

> I've been told to lose weight - this will be much easier said than

> done, given that it's so damn difficult to exercise and with PCOS I

> find it very hard to lose weight through diet. The last time I

> really made an effort, it took me 8 weeks to lose 4 pounds, so

given

> that I need to lose 70-80, I have no idea how I can possibly lose

> enough weight in a sensible enough space of time (or indeed how I

> can lose that much at all), so I'm at a loss there.

>

> My poor husband is just a withdrawn bundle of misery again,

> especially as this time round he's not just afraid of being left on

> his own, but of being left on his own with Will. Will really

> complicates matters - if we didn't have him, I'd definitely get the

> surgery done ASAP, but with him I find myself really disinclined.

I

> know I'm on a slow decline, but hope at least that it will be

> several years still before I need a wheelchair to get around. We

> have no family or friends who can help anywhere near us, so I can't

> imagine how we can cope with me having this surgery until Will is

> older, ideally potty trained.

>

> On the other hand, I'm getting increasing foot drop (I'm *hoping*

> that the epidural steroid injection I requested to be written up

for

> will reduce this again, but can't bank on it), and my balance is

> getting worse and I have to wonder how long before it's

> uncorrectable. My left sacro iliac joint is seriously shot, it's

> painful and hypermobile, so that's another fear - if I'm fused to

> the sacrum, and they don't adequately stabilise my pelvis, I

> honestly think I could go straight from surgery to wheelchair, as

> the kind of pain I get in there when it's bad leaves me quite

> literally unable to walk.

>

> All in all, it's a bit of a disaster! About all I have come up

with

> is that I will be getting at least one second opinion, and

> discussing very carefully the problems with the SI, and also how

> long they think I can afford to wait. What we're currently hoping

> is that if I can put it off, I'll decide on a surgeon and then

touch

> base every 6 months or so until I decide it's time to go ahead with

> it, but I don't know if we'll be able to work like that with any of

> them. Mr Webb is already semi-retired, so that's another factor to

> consider in the whole mess.

>

> Basically, I'm just lost at the moment, so any thoughts, opinions,

> suggestions or whatever are very welcome )

>

> Again, sorry to only return for a problem (

>

> titch

>