I had balance and walking problems
and my physiotherapist said
he suspected a spinal problem - I was shocked by this and
didn't at that time understand the link between my odd, wobbly walking
gait and my spine.
Anyway he referred me to a surgeon he
I saw a surgeon in
Stockton on Tees (on
a private basis). He said I had spinal stenosis
and scoliosis and that I would
definitely need surgery, (a laminectomy to relieve
pressure on my spinal cord). I had no
idea that I had Scoliosis or even what it was and at this stage
he should have referred me to a
Scoliosis specialist then
my story would have been very different!
It is important to say I was in no pain whatsoever at this
I was shocked when I saw my first
post-operative x-ray as it wasn't how I had expected it
to look – with titanium rods and screws put in from T12
down to S1. On the Internet I had seen post-op x-rays of
neat, straight instrumentation looking a bit like a
ladder with studs down either side? Mine looked more
like unsafe scaffolding that was leaning over to the
All seemed OK for about three months -
but then pains began. Each time I saw the surgeon he
just said ‘give it time’ and ‘be patient’. It got so bad
though I went from walking with sticks to being in a
wheelchair as I couldn’t bear to stand or walk. New
x-rays showed screws were loose and moving about in the
bone and the whole construct was unstable. He said I
needed revision surgery - all the metalwork taken
out and re-done!
I couldn’t believe I had to go through it all again but
there was no option with the pain I was in.
You may wonder why I went back to the
same surgeon but at that time I knew so little about
Scoliosis or surgery or even surgeons and felt that as
he knew my spine intimately I could trust him -
I thought I would be safe. I didn't know what else to do -
he was the 'professional'.
After the second operation new x-rays
didn’t look right again showing the metalwork leaning
even more over to the right than before!
When I got home
I knew something was seriously wrong. I couldn’t straighten up, couldn’t raise
my arms, I was walking bent in half facing the floor
and leaning to the right! It felt like I was fighting
against the internal metalwork and it was
The awful pain was still there and once
again when I saw the surgeon about it he just said I
should ‘be patient and give it all time to settle down’.
It never did and the pain became unbearable. He
suggested I needed a third operation – not surprisingly I
declined - my faith and confidence in him was gone! I
then began looking for other surgeons and asking their
opinions and advice!
I eventually chose Mr Dan Fagan who very clearly and
confidently explained what needed to be done. I instantly felt trust in this
man, he was kind, considerate, very
thorough and gave me confidence.
In his opinion I should never have had
such major surgery as my first two in a small private
hospital where there was no back up, no spinal
monitoring equipment and no neurosurgeon on hand!
My third major operation in the NHS
James Cook University Hospital, took 10 hours, with new
instrumentation from T9 down to S1 – it went really well
and the team there were wonderful, I was in hospital for
about a month. When I went home I had to be in a special
back brace all day, every day for three months. I
thought I had at last been repaired and for about 18
months was fine, no pain, no walking sticks, no
wheelchair and walking upright – but then sadly it
started to fail!
It started with a few familiar twinges and I
knew things were going wrong – I was heartbroken! How
could this be happening again? Mr Fagan had done his
best with what must have been an extremely difficult job
working to overcome the muscle, bone and nerve damage
along with the old scar tissue from the
two previous badly performed operations.
Although he didn’t
achieve total success in the end I most certainly don’t
blame him – his task was awesome. I wish I had found him in the
first place as I'm certain I would have had a far better
Mr Fagan kindly referred me to another specialist in
Scoliosis revision surgery at the Queens Medical Centre
Spinal Unit in Nottingham to seek advice as to whether
there was anything else could be done for me.
This surgeon was not happy for me to
I was told that if I did want to 'try
again' it would involve having my spine broken in at
least two places and bone wedges inserted to try and achieve
re-alignment and that I would need at least two,
possibly three more operations to achieve this - with no
guarantee it would work anyway or that my pain would be
any less. Being a fourth operation would make it more complicated and there would
definitely be severe complications such as loss of
bladder/bowel control and even some paralysis following such surgery.
Devastated by this I decided I wasn't
prepared to risk losing what mobility I do have and couldn't face being more of a burden on my husband! So I've
had no choice but to get on with my life the best I can
using strong painkillers, wheelchairs, mobility scooter and sticks to get around. I
have lost a great deal of mobility and my life (and of
course that of my husband’s) has changed drastically from
what it was prior to any surgery. All the things that I
used to enjoy are now gone like walking, swimming,
gardening, going to the cinema or holidays abroad.
Walking (which I cannot do unaided) and
sitting in one position for any length
gives me chronic pain that is so
I now know to my cost that the first surgeon was NOT a scoliosis surgeon! But he
advertised with a convincing website, had been seen in
press articles and spoke very convincingly about how
great he was!
“Don’t worry I can fix you sweetie” was his catchphrase! How
trusting was I?
I simply could not let him get away
with what he has done to me
successfully sued him. It turned out
not only did he perform TWO wrong procedures for
treating scoliosis but he didn't even follow the implant
manufacturers’ instructions of only using it for a
maximum of three levels (He did seven!). He admitted liability for his clinical negligence
but absolutely refused to apologise for what he had
It has been a
hollow victory though as no amount of compensation will
give me back the life I had before I met him.
Thankfully now though he will never be able to
injure or disable anyone else!
Accepting having to live
with chronic pain and
disability for the rest of my life now, with no alternatives, is the
hardest thing to come to terms with!
If you ever need spine surgery,
(especially for Scoliosis), please research your surgeon
Make sure you find a spinal/scoliosis specialist and not
just an orthopaedic surgeon!
nothing until you are absolutely sure you have the right
person for the job!
Scoliosis Association of United Kingdom
(SAUK) has lists
of Approved Scoliosis surgeons and I really wish I had
known about them before I went ahead with any surgery as
I am convinced I wouldn’t be in the position I am in