The one where I talk about Perthes Disease and me Pt1

12 months ago I started writing this blog and I have had an amazing adventure so far. One subject i skirted on is my diagnosis of Perthes Disease as a child and the impact it has had on me growing up.

My story with Perthes starts in 1992. I was always an active boy and certainly enjoyed sports, football was my passion. The first time I remember complaining about pain in my leg was in the Easter time of ‘92. I remember I had hurt my leg falling off a round about on the park and the pain I reported was attributed to that. I remember vividly being sat in the doctors office with my mum. Being given gel to rub on my leg.

A few months later I remember on holiday in Newquay and jumping off a small rock and screaming in agony. My dad said it was this point that he realised there was something seriously wrong. When we got back home I remember being taken to see the doctor. It’s funny how your remember things, I can see Dr Wrigglesworth’s office now. He examined me and the next thing I can remember was I was taken straight to hospital for X-ray and tests. It was confirmed that I had been diagnosed with Legg-Calve Perthes Disease it was the 11th August 1992.

There were a number of different options regarding treatment and my parents were not sure what to do. You see Perthes Disease is really rare. It took me until I was 32 before I actually met someone else who had suffered with it. This was through the Perthes Association.

I suppose I best explain quickly what Perthes disease is. It is also known as Avascular Necrosis. Simply put it is where the head of the femur has a lack of blood supply and dies leading to softening on the femoral head. This in turn leads to the bone becoming deformed and causes lots of issues.

Here in this first X-ray you can see the Diseased Bone and deformity. This is when I was an adult. I don’t have any photos from when I was younger, people saved camera films for special occasions. The choices my parents faced were 1) leave it, which would result in a wheelchair for rest of life 2) operate, you had the choice of major surgery or 3) traction, which is what they did for decades in medicine.

I cannot remember specifically being asked for my input, but mum and dad opted for the safest option; traction. So began my first stint in traction. This meant I was in the Children’s hospital for weeks at a time. I’m not entirely sure how long I spent in that bed on the ward, but it must have been a while as I remember fireworks party and my bed being wheeled outside.

When I did get out I had to use a wheelchair as the bone was weak. In the spring my folks took us to Florida, which was a big deal. I’d never been on a plane before. Also, disabled didn’t have to queue so I remember going on all the rides. So have some mega memories that I am so grateful to my folks for.

I think it was somewhere around this time I had a femoral osteotomy, well my first! I’m not sure of the specifics but my consultant (I was lucky to have Mr Howard who looked after me for 27 years) said it was time to operate. A femoral osteotomy is where your femur is cut and rotated so that a smooth(er) surface of bone can join the hip. It is then held in place with pins and you are placed in a cast from chest to ankles on both legs, with an opening so you can go toilet.

This X-ray is from one of my ops I had as an adult, but is basically the same op but with bigger pins. I missed a lot of school and when in hospital I went to the hospital school and when at home I had a private tutor. I missed playing with my friends more than anything. And this was all in the days before cable TV, Netflix and PlayStation. I immersed myself in the beano and watched VHS’s like no tomorrow.

Once the osteotomy had healed I remember the scariest thing ever. A nurse with a power saw cutting off the plaster, it still haunts me to this day. I remember my dad really hurt his back holding me. Another thing I remember was spending lots of time with my Nana and Grandad, they were coming to see me nearly every day and always bought sweets :-).

Next time I’ll talk about my recovery from the childhood trauma and the later surgeries I had.