This is my Spine/Scoliosis story : You might say a cautionary tale?           (Scoliosis is a curvature of the spine)

This is a long and complicated story but it might just help someone from making the same mistakes I did?

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 knew!

I saw the 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 time!

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 right!

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, after all, the 'professional'.

After the revision 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 terrifying!
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! Unbelievable!

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 did begin 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 outcome.
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 proceed further. 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 of time gives me chronic pain that is so debilitating.

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 and I 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 done!

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 thoroughly. Make sure you find a spinal/scoliosis specialist and not just an orthopaedic surgeon!

Do nothing until you are absolutely sure you have the right person for the job!

The 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 today.


If you would like to know more or if you have suffered the same please contact me on my e-mail  

               Spine X-ray after first operation
           Some screws not even fixed into bone!
       Metal screws came loose within three months
            and the whole frame became unstable.

              Spine X-ray after second operation.
              Yet again screws came loose, moving about in the bone. The pain after this op was excruciating!
Left bending forward and to the right.

          X-ray after final operation - much straighter.
  Can stand a litle  better but  with chronic pain
mostly due to previous nerve and bone damage
and I have very poor mobility and balance.