Response to (including historic UK post)

[Guest guest]

Hi again, --

Thanks for your follow-up posts. How did the MRI go, and do you have

any further information?

No, I have not heard of the Katharina Schroth (spelling?) technique -

- what does this entail?

We have (or have had) several other members from the U.K. You may

want to do a search in the messages section for recent posts from a

member whose handle is something like " cloudkeeper. " I believe she

was scheduled to have hardware removal surgery last month. She could

give you the name of her UK surgeon.

In fact, you may want to do a message search of the entire archives

for other comments from UK members. So far the most detailed post I

have found is the one I am appending to this letter, from a member

named Titch who has been very informative and active in the past.

Please keep us posted on your progress!

Best.

-- see below for post from Titch:

Re: THIRD QUESTION OF THE WEEK, 04-20-2005

Mostly just for reference, as it won't have any relevance to most or

perhaps all of you, it's not so easy for someone in the UK. It's also

long as it needs background to make sense.

We're entitled to second opinions under the NHS, but most people

don't

realise this. Most GPs are very reluctant to send you for a second

opinion in any case. Because of the specialist nature of spine

surgery, it's likely that you'll just get sent to a colleague of the

first person you see in any case, which isn't much use. And because

fixed sagittal imbalance is such a hidden problem, one that GPs just

don't know about, it's extremely difficult to get sent to a

specialist

centre unless you happen to live more or less on the doorstep of one.

I self diagnosed back at the start of 2000 after stumbling across

Salvaged Sisters and recognising myself. I knew what a fight was

ahead of me, and couldn't even find out where I should begin in a

search for a surgeon. Having ended up in that state by having my

first surgery done by the local hip and knee guy in a rural hospital,

I was terrified of being sent to someone similar. In the end I

searched out contact details for top US surgeons, and emailed every

every one that had their address in the public domain. One was kind

enough to reply and suggested that Mr Morley at RNOH and Mr Webb at

QMC Nottingham were very well known.

I fought to be sent straight to RNOH Stanmore, but couldn't choose my

surgeon. The one I saw gave perfectly valid recommendations, but also

didn't think it should be rushed into, that I should wait until it

was

unbearable before going on the (2 year!!) waiting list - this was

early 2001, and I was already becoming significantly disabled and was

in a lot of pain. At this point I did an eeny-meeny-miny-moe to

choose between Webb and Morley, and chose Webb mainly because he

wasn't a colleague of the guy I'd just seen.

I saw him privately at the start of May 2001, and he saw no reason to

wait for the surgery and also suggested a different surgery that I

thought was probably better, so I was put straight on the supposedly

8-10 month list. At that point, I needed hardware removal, a 2-3

smallish osteotomies and fusion extension, say T6-L3 instead of the

current T3-L4.

However, within 3 months I keeled off dramatically to the left. My

forward lean also got worse, and when I pressed to go back, to be

classed as urgent, my GP messed up the referral (for some reason he

was angry I was being treated out of area, and insisted that if I had

to be, he was sending me back to the butcher that made such a mess in

the first place - the only thing that put him off was that said

butcher no longer does spine surgeries) and I was seen by a different

doctor as a new patient. He took one look at the xrays and said it

was now so complex the *only* person who could deal with it was Mr

Webb.

Consequently I waited just shy of 18 months for my surgery. By that

point I could barely walk, was on large amounts of painkillers that

barely touched the roughest edges of the pain. When they gave me the

date, I'd finally given in and found out how to book the powered

wheelchairs at ASDA, so I could do the shopping, because I could

barely struggle from the car to the store, let alone go round it.

They actually didn't think they had any chance of getting me upright

at that point - their intention was to effect what little improvement

they could, and reduce my pain. It was expected that I'd be fused to

L5 definitely, and the sacrum probably, as well as up to T3. As it

is, they got away with L4 (my xrays can be seen by members at my

site,

which is in my sig), completely rid me of my leftward lean (I

actually

lean a little to the right now, it's quite funny ;o) and got me close

to upright - I now only lean about 2 inches forward if I straighten

my

knees, not 8 or more - there's actually a picture here:

www.puddleduck.info/titch/titchleansmall.jpg which shows me a few

days

pre-surgery with knees straight, pulling myself up as straight as I

possibly could - if I let myself stand as my back wanted to pull me,

I

*literally* fell over, because I leaned so far - even shuffling along

with everything bent, I had to walk with a stick to hold me up. Had

the system allowed me my surgery a year earlier I have no doubt the

results would have been much better. I'm still somewhat disabled,

cannot work full time, cannot do a ton of things I used to or would

want to. But while I rail against the system, I will forever be

totally grateful to Mr Webb for giving me my life back, life which

was

taken by someone who'd been tinkering for 20 years and still hadn't

learned better.

No matter how things may be elsewhere, here in the UK it is

absolutely

essential to find a good surgeon, who actually knows how to deal with

such complex issues.

My apologies for the length of this - I joined this group a long time

ago, but have only just rediscovered it.

titch

[Guest guest]

Thank God I have private health care cause I dont think I could deal

with the NHS ( public health care in England ) tried to get to see

the surgeon I wanted to see for a second opioion through them on

Friday and it was useless. Have decided to wait till July when my

policy is topped up again and go and see him. Guess there is not

much rush cause I wont be getting anything done straight away

anyway.I am only looking at all the options at the minute.

The Katherina Scroth technique is used in Germany and Spain to help

correct ( by a certain degree ) and then maintain the curve.

I have pasted the link.

http://www.scoliosissos.com/

It does cost a bit but it might just give me back to few degrees of

correction that I have lost and that would be great. U can only do

it if u are fused but have had the metal taken out.

I have my scan to day so should find out late in the week or early

next week what it shows.

Thanks

>

> Hi again, --

>

> Thanks for your follow-up posts. How did the MRI go, and do you

have

> any further information?

>

> No, I have not heard of the Katharina Schroth (spelling?)

technique -

> - what does this entail?

>

> We have (or have had) several other members from the U.K. You may

> want to do a search in the messages section for recent posts from

a

> member whose handle is something like " cloudkeeper. " I believe she

> was scheduled to have hardware removal surgery last month. She

could

> give you the name of her UK surgeon.

>

> In fact, you may want to do a message search of the entire

archives

> for other comments from UK members. So far the most detailed post

I

> have found is the one I am appending to this letter, from a member

> named Titch who has been very informative and active in the past.

>

> Please keep us posted on your progress!

>

> Best.

> -- see below for post from Titch:

>

> Re: THIRD QUESTION OF THE WEEK, 04-20-2005

>

> Mostly just for reference, as it won't have any relevance to most

or

> perhaps all of you, it's not so easy for someone in the UK. It's

also

> long as it needs background to make sense.

>

> We're entitled to second opinions under the NHS, but most people

> don't

> realise this. Most GPs are very reluctant to send you for a second

> opinion in any case. Because of the specialist nature of spine

> surgery, it's likely that you'll just get sent to a colleague of

the

> first person you see in any case, which isn't much use. And because

> fixed sagittal imbalance is such a hidden problem, one that GPs

just

> don't know about, it's extremely difficult to get sent to a

> specialist

> centre unless you happen to live more or less on the doorstep of

one.

>

> I self diagnosed back at the start of 2000 after stumbling across

> Salvaged Sisters and recognising myself. I knew what a fight was

> ahead of me, and couldn't even find out where I should begin in a

> search for a surgeon. Having ended up in that state by having my

> first surgery done by the local hip and knee guy in a rural

hospital,

> I was terrified of being sent to someone similar. In the end I

> searched out contact details for top US surgeons, and emailed every

> every one that had their address in the public domain. One was kind

> enough to reply and suggested that Mr Morley at RNOH and Mr Webb at

> QMC Nottingham were very well known.

>

> I fought to be sent straight to RNOH Stanmore, but couldn't choose

my

> surgeon. The one I saw gave perfectly valid recommendations, but

also

> didn't think it should be rushed into, that I should wait until it

> was

> unbearable before going on the (2 year!!) waiting list - this was

> early 2001, and I was already becoming significantly disabled and

was

> in a lot of pain. At this point I did an eeny-meeny-miny-moe to

> choose between Webb and Morley, and chose Webb mainly because he

> wasn't a colleague of the guy I'd just seen.

>

> I saw him privately at the start of May 2001, and he saw no reason

to

> wait for the surgery and also suggested a different surgery that I

> thought was probably better, so I was put straight on the

supposedly

> 8-10 month list. At that point, I needed hardware removal, a 2-3

> smallish osteotomies and fusion extension, say T6-L3 instead of the

> current T3-L4.

>

> However, within 3 months I keeled off dramatically to the left. My

> forward lean also got worse, and when I pressed to go back, to be

> classed as urgent, my GP messed up the referral (for some reason he

> was angry I was being treated out of area, and insisted that if I

had

> to be, he was sending me back to the butcher that made such a mess

in

> the first place - the only thing that put him off was that said

> butcher no longer does spine surgeries) and I was seen by a

different

> doctor as a new patient. He took one look at the xrays and said it

> was now so complex the *only* person who could deal with it was Mr

> Webb.

>

> Consequently I waited just shy of 18 months for my surgery. By that

> point I could barely walk, was on large amounts of painkillers that

> barely touched the roughest edges of the pain. When they gave me

the

> date, I'd finally given in and found out how to book the powered

> wheelchairs at ASDA, so I could do the shopping, because I could

> barely struggle from the car to the store, let alone go round it.

>

> They actually didn't think they had any chance of getting me

upright

> at that point - their intention was to effect what little

improvement

> they could, and reduce my pain. It was expected that I'd be fused

to

> L5 definitely, and the sacrum probably, as well as up to T3. As it

> is, they got away with L4 (my xrays can be seen by members at my

> site,

> which is in my sig), completely rid me of my leftward lean (I

> actually

> lean a little to the right now, it's quite funny ;o) and got me

close

> to upright - I now only lean about 2 inches forward if I

straighten

> my

> knees, not 8 or more - there's actually a picture here:

> www.puddleduck.info/titch/titchleansmall.jpg which shows me a few

> days

> pre-surgery with knees straight, pulling myself up as straight as I

> possibly could - if I let myself stand as my back wanted to pull

me,

> I

> *literally* fell over, because I leaned so far - even shuffling

along

> with everything bent, I had to walk with a stick to hold me up. Had

> the system allowed me my surgery a year earlier I have no doubt the

> results would have been much better. I'm still somewhat disabled,

> cannot work full time, cannot do a ton of things I used to or would

> want to. But while I rail against the system, I will forever be

> totally grateful to Mr Webb for giving me my life back, life which

> was

> taken by someone who'd been tinkering for 20 years and still hadn't

> learned better.

>

> No matter how things may be elsewhere, here in the UK it is

> absolutely

> essential to find a good surgeon, who actually knows how to deal

with

> such complex issues.

>

> My apologies for the length of this - I joined this group a long

time

> ago, but have only just rediscovered it.

>

> titch

>