3 years ago...

In Spring 2006 I underwent serious surgery to have a Taylor Spatial Frame attached to my right tibia, to correct the mal-alignment. Mr Hill and his team undertook the operation at The Princess Alexandra on 8th May.

My mother and father took me up to Harlow on the Sunday before and I was petrified. I had no real idea what to expect and in retrospect the hospital did very little to prepare us for what we were about to go through. The days of the internet were relatively early (in terms of mass access) therefore we did very little research. After a fairly sleepless night, Monday morning whizzed past in a blur of appointments with consultants, anaesthetists and before I knew I was on the gurney sobbing, being wheeled in to theatre.

Four and a half hours later I woke up, very groggy and in pain, even though I had a epidural which numbed everything from my waist down. The following 24hrs are very blurry. I drifted in and out of consciousness and when I was awake I just howled with pain - nothing seemed to dull the agony in my right leg.

The Wednesday was slightly better. My catheter and epidural were removed and the physio got me out of bed, which was a totally terrifying thought as I was being encouraged to put my weight through something which was effectively holding my leg together. It took me a couple of days to be able to look at the frame, I terrified as to what it would look like. When I did pluck up the courage, it was not as bad as I was expecting and I was taught how to change all the dressings and clean the pin-sites. I had a stream of visitors over the weekend and on the Monday I was discharged, after making the first alteration to the frame, following the programme which has been created for me.

The weeks that followed at home were terrible. The pain was out of control, I spent three weeks lying on the sofa unable to move. I was up to eye balls in painkillers all of which has their own side effects - everything for mood-swings and hyper-sensitivity to constipation, skin rashes and nausea. Pin turning was the low point of everyday. I was given oramorph 40 minutes ahead of the pin turning, although this seemed to have very little effect. The turning process was excruciating, my mother or father would turn the pins for me as I simply could not see straight. The dark circles under my eyes got darker as I got moodier and the hospital did very little to support me. The local NHS facilities were slightly more helpful, the physio and district nurses visited me at home. Mobilisation was limited due to the pain and I could just about make it to the toilet and back, therefore muscle deterioration in my right thigh was quick. At one point I was unable to even lift my own leg without assistance. My days were spent lying on the sofa, unable to do anything. I could not watch TV as I was completely intolerant to the sound and I could not read as I had no attention span - all due to the drugs which I was taking. I was unable to sleep at night as I was very anxious and could not get comfortable, I was continually thirsty (yet another side affect of opiate based drugs), which in turned caused me to constantly need the loo. It was a vicious circle which I could not seem to break. I lost a lot of weight, the black circles under my eyes darkened as I became more reliant on the drugs.

Two weeks after being discharged we made our way back up to Harlow for the first check-up. Following a number of x-rays Mr Hill confirmed that everything was moving in the right direction. He decided that the pin-turning programme needed to be tweaked finally and as this was being undertaken the Internet connection in the hospital crashed. It was decided that the new programme would be faxed to me at home (how did we cope without email).... That evening the new programme was received and it became apparent that I needed a strut replacement. We were given the opportunity to head back up to Harlow or go to Mr Hill's private clinic in Great Portland Street, we opted for the latter and the next day, I was loaded back into the car and we made the journey to central London. As with all day trips, this was another traumatic experience, the pain rocketed and every lump and bump in the road was felt. The strut was changed, a new programme provided and we were sent home - by this time I was an exhausted wreck.

Pin-turning continued over the next week. The pain did not diminish and the painkillers continued to cause me no end of problems. I managed to get up to the physio for a couple of sessions, but movement was still limited due to the pain. Towards the end of the second phase of adjusting, my parents started to notice a change in the leg. My tibia started to swing out to the right (from my perspective, looking down at my leg) - we mentioned it to the physio who agreed that something did not look quite right, at my next hospital appointment we mentioned this to the Registrar, as Mr Hill was away speaking at a seminar. The registrar dismissed our concerns and put the mal-alignment down to the swelling associated with having the frame in place which re-assured us for the time being.

Eventually the pin turning stopped and I was allowed to heal. Within days, the pain reduced. I was able to stop taking the morphine and then suffered with the withdrawal symptoms (I was likened to a recovering drug addict). Once the pain reduced, I was able to start mobilising a lot more and slowly my life re-started and I even enjoyed my first alcoholic drink in several weeks.

Six weeks post-op I made the journey to my uncle's villa in the South of France - this was a brave decision, but the change of scene and warm weather was very welcome - at last it seemed that I was on the road to recovery.

Taking responsibility...

Three years a go I bit the bullet and decided that I could no longer ignore the situation and should get my leg fixed once and for all.

I got back in touch with my surgeon (Mr RA Hill) whose care I'd been under at Great Ormond Street (GOSH). As I was now over 18, I was no longer able to attend GOSH, therefore I started to see him at his adult NHS clinic at the Princess Alexandra Hospital (PAH) in Harlow.

This was a huge step for me as I had successfully buried my head in the sand and tried to forget about the situation for a number of years. However, the time seemed right. I had been in my job as an event manager for a sports marketing agency for a couple of years and my employers were very supportive, I was also in the right place mentally to take responsibility and had fantastic support from my friends and family.

Mr Hill presented two options:
a) A closing wedge osteotomy - straightening my leg acutely on the operating table utilising a number of plates and screws to hold it on place
b) Application of a TSF and the slow and actuate correction of the deformity

Initially option a) looked like the most preferable... more pain up front but all the gore would be done in theatre and I would be in a full leg plaster cast post-op. However, looking into it in more detail and taking Mr Hill's advice this turned out not be the case... much to my horror! He explained that although option a) may seem favorable, it would not be his preferred choice. He advised that there was very little room for error with a closing wedge osteotomy, if the angle was not got absolutely accurate then there was no going back. However, the TSF option was much more versatile. The programme could be re-run and altered to ensure that the angle was corrected.

Therefore, against everything I wanted, I went with Mr Hill's recommendation of the application of the TSF - after all he was the expert. This was a tough decision as I had a phobia of the frames. They made me feel sick to the stomach. I saw them at the clinics I attended at PAH and I had to look away. How could anyone cope with having one of those attached to their leg? Clearly I had to overcome this fear before I was to go under the knife.

A bit of background information...

I was diagnosed with Congenital Hemihypertrophy (CH) at the age of about 6 months old by my father who noticed I had one bottom cheek larger than the other when he was changing my nappy! CH is relatively uncommon disorder which in short leaves me with one side of my body slightly larger than the other. The only place this is noticeable is on my legs and it became evident from early on that differing leg lengths were going to cause me problems.

I was referred to Great Ormond Street Hospital and in January 1993 (I was 11 years old) I underwent my first operation - an epiphysiodesis of the right fibula and tibia. The aim was to destroy the growth plate in my right leg so that my left leg could catch up - this was undertaken just before my pre-pubescent growth spurt. At this stage I already had a 4 cm difference between my right and left leg - right leg being longer.

This surgery proved to be successful as my left leg caught up with my right leaving a minimal difference between them. However, as I continued to grow it became evident that something was not quite right. In 1997 it was confirmed that the growth plate in my right leg had not been destroyed equally causing the outside of my leg to grow at a slightly faster rate than the inside of my leg, causing me to develop a varus deformity of the proximal tibia - in other words a slight bowing of the leg from the knee to the ankle. I was advised that although I may not present any symptoms for 20-30 years there was an increased chance that I would develop degenerative arthritis in my knee if I left this un-treated. I was left to think about my options of either leaving it and living with the consequences in the future or undergoing corrective surgery in the future to correct the alignment of my leg.

On a day to day basis my condition does not effect me. I am a very active individual who attends the gym regularly, I am a mad keen skier and on the go constantly with a very busy work and social life. The knowledge that I would need further surgery hung-over me, however I decided to complete my schooling and get a couple of years of my career under my belt before continuing with any further treatment. There was also the possibility that as time progressed science would also progress and new and more effective techniques would become available as possible options.

Why Blog?

A sequence of rather unfortunate events and surgeries have left me once again recuperating in West Sussex with a rather nasty broken leg, accomapnied by a Taylor Spatial Frame (TSF). This is my second time with one of these contraptions and I successfully buried my head in the sand on the previous occasion, therefore I thought I would document my experiences this time. It may not be of interest to many people but it may help anyone who is facing this procedure, which is a terrifying prospect. It may also be interesting for those who are supporting someone going through this, as I could not and would not want to go through this on my own. My family and friends play an instrumental part in my recovery.

I have undertaken some research on the web and there seems to be very little informaiton in terms of personal experiences of using a TSF. I plan on using this blog more as a diary, sharing my experiences as they happen. I hope you find this informative and interesting.