Edith Crowther - 8/02, Dr. Walter FUSED HIPS**VIDEO**

My Story

When I was 12 I encountered Osteomylitis. This is a nasty infection of the bone marrow. It first occurred in the upper left hip but over the next 6 yrs occurred in both wrists and migrated to occur in the muscles of both hips, my back and finally settled into the bone of my left pelvis beside my hip joint. In the end the OS fused the hip joint in an effort to stop the osteomylitis being a problem.

The osteomylitis infections stopped but left me with no left hip. That means that one cannot sit in a chair normally, cars are difficult to get into and out of, small spaces such as aero plane seats are a nightmare etc. Constant pressure is then put on the spine and knees to work to replace the hip joint.

At 18 I finally could get on with life. I got work in an office, then went to University and had a couple of overseas tours including USA and UK, as well as travelling my own country.

In my early 30’s I had a son and came back to my home roots to live, as I was finding it harder to cope with office work with no left hip joint. Any doctor I ever saw said it was impossible for me to have anything done about my hip, as this would only stir up the osteomylitis, and anyway they figured all muscles would be dead with atrophy and I wouldn’t be able to walk.

I kept being physically active. Grew an acre of cymbidium orchids for flowers, planted up 3 acres of rainforest and looked after my son.

After 40, the impact of having the fused hip started to play havoc with the rest of the body, and I was slowly brought to being fairly crippled state. Every so often I would hurt my back doing something and during those times I could barely walk as I couldn’t hold my torso upright and move my right leg.

I was experiencing life getting narrower and narrower and less able to even care for myself. I was facing needing to live in aged care at the tender age of 52, when I decided that perhaps I needed to stop listening to general doctors and try saving myself.

While I had had internet for ages I had never thought to use it to help myself re my hip……… And so I decided one afternoon March 2002 after another back incident, to go use Google to see what information was around about hip replacements.  I stumbled onto the Totallyhip list – Resurface list was only in infancy then.

At that time a lady called Elizabeth was running same. My life was suddenly and totally altered when she replied to my simple email asking if anyone had ever heard of anyone like me getting a hip replacement. 
(This is one reason I continue to hang around hip lists in case another one like me stumbles in one hour……smile).

She wrote and said yes, with reservations, and referred me to a couple of internet sites with information including a couple of US Drs names.

With this I figured that if some US surgeon had done it, an Aussie wouldn’t be far behind. Little did I know that these days it is around the other way….i.e. we were into resurfacing long before US.

An article about people with hip replaced via a THR with such a long space as mine, wasn’t very joyful. Low success, problems with dislocations, nonexistent muscles etc. made 30 yrs considered far too long, let alone the 35 I was looking at.

However I am not easily deterred. So I started trying to find an Australian surgeon who would at least talk to me. I wrote to a couple of OS myself and phone close by ones, asked my medical sister etc.

Nothing bought me much joy. One soon finds out what an arrogant lot OS are. However my sister did actually act and asked her husband, who is an anaesthest to keep an eye out. Lucky for me within a couple of weeks a young OS came to their area from Sydney to do some temp work. My BIL asked him and he recommended a Dr Len Walter saying that there wasn’t anything he couldn’t do with a hip joint.

My sister rang Dr Len and got a surprise when he was happy to speak to her. Apparently so many OS are even unhappy to communicate with mere GP, let alone us public. He knew exactly what she spoke about and offered to look at my case and requested that I send him an email. Wow an OS who was happy to speak directly to patients.

This was like being given the winning ticket in lotto. Part of me could hardly believe it, and part of me was terrified it would go away.

And so started my adventure to get a new hip.

Dr Len said he would really like to try giving me a resurface because of its numerous advantages for someone like me. i.e. hard to dislocate and minimal disturbance of the bone given the osteomylitis. He stated the risks that I may never walk again, may walk very poorly, or even have the osteomylitis reoccur (though he thought that very unlikely given his experience over the course of his surgery life), but if I wanted to have a go he was happy to help me.

At that time he was the only surgeon who had ever had a success at putting a resurface device into a fused hip in the whole world. Dr Bose has since. He had done 2 previously to mine and both were doing well.
I had to wait 3 months for my trip down the long corridor and strangely it was on my son’s birthday.

I was terrified something would happen to Dr Len while I waited. I used to ring up the surgery each week to see he was well, which they tolerated. But when one has waited for something for 35 yrs and only one person offers the out, it is hard to be calm.

Funny things happened like cutting below my ankle a few days before surgery which made me scared it would be cancelled. The visit from the anaesthiest the night before saw him telling me that, if I had had osteomylitis, then under no circumstances should I be having the operation the next day. Had to tell him to go fight with the OS and just do what he was paid for i.e. the anaesthetic.

The operation was thought to take 6 hrs and so when I woke up in recovery after just 3 hrs, I was instantly worried that something had gone wrong. Thankfully nothing had. Just Dr Len was getting faster and found the situation around my hip in a better condition than he thought it would be.

Recovery was different to most, as the hip was still very stiff and the leg totally weak. It ached, jumped and carried on in general as the muscles hadn’t moved in 35 yrs, and had been pulled around during surgery. Nothing we could do made much difference except some valium.
Dr Len had also removed some Greater Trancator Bone in order not to damage muscles any further, and grafted it back on again. Meaning I couldn’t put weight on the leg either.

They were to put me into rehab hospital for 14 days after 7 days in hospital, but we parted company after about 10 days and I flew 1000 miles home. Rehab was pretty useless when one has muscles in my state, so we grew tired of each other quickly.

Then I commenced the long rehab. First I had to try to get the leg to respond to any desires on my part to get it to move. It took weeks to just get it to follow me into a car onto a bed etc. At 8 weeks I was allowed to give the crutches away and take my first steps with a hip joint for 35 yrs. This was interesting and very very wobbly, given I had few muscles doing anything.

Around 4 months I took to the pool. I had been advised to do this by a young sports psychologist. No one had any idea really of what I needed to do, as there isn’t a lot of info around about rehabilitating such a situation i.e. I have not found anyone else who has rehabilitated such a hip joint. So I just worked away with some advice from my son who was studying exercise science at Uni and the young lass who ran the pool, who had a degree in same. Some things I had to figure out myself by thinking about how strokes are rehab and one gets the brain to send messages to body bits again.

Lots of dog paddle up and down the pool. Lots of trying to get the leg to just push down in water. Lots of trying to get it to bend.

Very slowly it all started to respond and still gets a tiny bit better all the time.

Today 2008 my ROM is not great. I suspect that the placement of the prosthesis limits just how much forward bend I will ever get – just shy of 90 deg. Mine is further down the Femoral head than any others’ resurfaces I have seen. But I regard this as a fair tradeoff for none at all. I also have extensive scar tissue from other adventures that limits getting far.

The leg is weaker than the other one, but looks the same. I can do about all I want to do and most importantly sit fairly comfortably in a chair. My health has significantly improved. I am able to keep myself health and fit. And after all these years of Rehabilitation went off and got myself trained as a general PT, Aqua and Pilates Instructor.

I now run a small exercise studio specializing in Rehabilitation – see video of me showing off in same.

Edith Crowther