Follow-up re UK doctors

[Guest guest]

Hi again, --

I found Titch's comments as promised. These are from a work in

progress which is still being edited, the " Feisty FAQ. " I expect Titch

will be glad to elaborate on this, either via posting or private email

correspondence with you. You can also dig up other helpful information

she may have posted by visiting our website and inputting a search

term in the message archives, such as " Titch. " This will bring up

(although just one page at a time) previous messages from her.

Best,

(Please see below for FAQ excerpt from Titch)

Titch: Mostly just for reference, as this won't have any relevance to

most or perhaps all of you, I will describe the process of obtaining

surgery in the U.K. Because of the need to include some background

information, my explanation will be somewhat long.

We're entitled to second opinions under the National Health Service

(NHS), but most people don't realize this. Also, most general

practitioners (GPs) are very reluctant to send you for a second

opinion.. Most likely the GP will simply refer you to a colleague of

his choice who performs spinal surgery.. 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-center

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 the

" Salvaged Sisters " website [note: another flatback forum, located at

delphiforums -- created and managed by Kathleen] and recognizing

myself. At that point I knew what a fight lay ahead. Initially I

couldn't even find out where I should begin my search for a surgeon.

Having ended up in the state I was in after surgery performed 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 each one who had an address in the public

domain. One surgeon was kind enough to reply, advising me that Mr

Morley at RNOH Stanmore and Mr Webb at QMC Nottingham were very well

known. [Note: In Britain, surgeons are addressed as " Mr " rather than

" Dr. " ]

I fought successfully to be sent straight to RNOH Stanmore, but was

not allowed to choose my surgeon there.. The one I saw gave perfectly

valid recommendations, but also didn't think surgery should be rushed

into. He advised waiting until my condition was unbearable before

going on the (two-year!!) waiting list. This was in early 2001, at

which time I was already becoming significantly disabled and

experiencing considerabled pain; hence, I proceeded to seek a second

opinion. 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 Mr. Webb privately at the start of May 2001. He saw no reason to

wait for the surgery. Also, he suggested a different surgical

procedure from the one previously proposed. I thought this alternative

approach was probably better, so I opted for it. I was put straight

on the supposedly 8-10- month waiting list. At that point, I needed

hardware removal, 2-3 smallish osteotomies, and extension of my T3-L4

fusion approximately to L6.

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, can not 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.

__________