Adam's Story - Perthes' Disease

I started having problems when I was 18 months old.
I was diagnosed with bilateral Perthes disease on boxing day 1997 aged 3.

Adam (aged 10)

I‘ve had lots of physiotherapy and loads of Xrays since then. Mr O’Hara has kept an eye on me over the years, but in 2003 I began to get worse and started to walk with my toes pointing inwards and I had lost some of the movement in my legs (below my knees).

So in September 2003 after going to see Mr O’Hara we chatted about having surgery because my Perthes wasn’t getting any better. He gave me a few weeks to have a think about it and to decide whether I was going to have one hip done first and then the other a few weeks later, or to have both done at the same time.

My parents and I decided to have the two done at the same time (To get it over and done with !). My operation was set for March 2004 just before the Easter holidays, so I wouldn’t miss too much time from school.

While I was in hospital I had to have a pre-med which calmed me down before the operation but I had to have a needle as well to take some blood (I’m not very keen on those!).

When I had the operation Mr O’Hara put in two metal plates and pins, the operation itself took nearly three and a half hours . After my operation I had to stay in hospital for one week, and when I came out of hospital I was in a wheelchair for Six Weeks. I had physiotherapy to do at home, and after the first Six Weeks I started having hydrotherapy and saw Mr O’Hara every four weeks, and if my legs were strong enough each time he’d let me move on to a different stage, and after I saw him I’d then go to physiotherapy for some new exercises.

Unfortunately three months later at the end of June I found out that my metal plate on the left side had broken, for a few days before I found out I had pain in my left leg and had lost some movement. I couldn’t do my exercises and felt uncomfortable so my Mom, Dad and Sister took me to Accident and Emergency to have a x-ray which showed that the plate had snapped. I had to go back on to Ward 5 immediately and could not get out of bed at all. I had my surgery on the Monday to replace my broken plate, I think it put my recovery behind for Three to Four Months and I was back in my wheelchair for another Six to Eight Weeks. I was still having my physiotherapy, my exercises were quite hard with doing them for Twenty Minutes twice daily and my legs were really achy.

I’ve always been warned since that my plates could break so I am very careful and take it easy. I go swimming twice a week but have to go in on the chairlift because I’m not able to fully bear weight.

Places to go with a chair lift are Chelmsley Wood and Tudor Grange and you can have hydrotherapy at Heartlands Hospital and the Royal Orthopaedic Hospital in Northfield. I like to go swimming early morning or in the evening when its quiet.

At school for the first few months I was going in for the odd half a day but Mom and Dad stayed, they sat in the Library while I had my lessons and they were always there if I needed the loo. This carried on for a good few months until I was able to get to the loo on my own. I had to sit in the Library at break times and I would play games with my friends, but now I’m on my crutches I can go outside on sunny days and chat to my friends (Mom & Dad don’t stay anymore!) I found it very difficult being the way I was because of the swimming, hydro, physio, school , going shopping and taking the dog for a walk with the dog pulling my Mom and Me in the wheelchair! The thing I miss most is not being able to play football as I absolutely love it. What I hated the most was being in a wheelchair because everyone stares at you.

Mom's Story

It’s now the middle of November over eight months since Adam had his first operation he is still on crutches, weight bearing on his right leg and partial weight bearing on the left. We know the left leg hasn’t heeled as good as the right one but other people I’ve spoken to who have had the same operation as Adam have said this in normal and that eventually it will catch up.

I had to take about six months off work and Adam had to have his bed in the living room for about Six Months. It was hard work but I’m very confident that soon Adam will be completely mobile again and can’t wait till he’s running round like he used to.

When the plate broke it put his recovery back but I know it will be worth it in the end.

Our sincere thanks go to Mr O’Hara, all the nurses on Ward 5 and all the Physiotherapists who have helped Adam so far.

Many Thanks To You All