My Perthes Hip Story

This is what I can remember of my Perthes hip journey.  I may have missed some things out and got some of the exact dates and ages wrong, but it gives a good idea of what I have been through with my hip.

  • I was diagnosed with Legg Calve Perthes disease in my left hip aged seven in 1993. I was referred to an orthopedic specialist who used x-rays to diagnose me.  I was told to reduce heavy impact activity on the hip.  I was never very much into sports anyway, so did not mind having to give up things like PE in school.  However I was disappointed to have to leave my ballet classes that I really enjoyed.  I remember my mum pushing me to school in a large buggy to save me walking.
  • When I was seven or eight I spent a week in hospital. My left leg was put in traction for the week, meaning it had weights put on the end to pull the hip joint out more in preparation for surgery.  They were going to put me in a broomstick plaster, but when they opened me up for surgery they decided my hip was past the point they could do anything and nothing was done.  I think it was both disappointing and a relief to not have the treatment, as those plasters look very difficult to deal with.  It might have been good to try the treatment, but having heard stories of people who were in them for ages still going on to have hip issues later it sounds like it may not have been much use anyway.  After my hospital stay I used crutches for a number of months, possibly a year or more, and then moved onto a walking stick.
  • I had for a few sessions of physiotherapy. I did the exercises they give me at home some days, but probably quit doing them far too soon and did them too sporadically.  It is not easy to get an eight or nine year old to do daily exercises.  Some days the exercises hurt too much anyway.  My mum took me swimming more often on the advice of the physiotherapist. Swimming is one form of exercise I actually enjoyed as a child.  Swimming is less painful on the hip as the water takes the weight off it.
  • Aged about ten or eleven my hip was less painful for a couple of years or so. I stopped using any walking aid and managed to get about better.
  • My hip got more painful again and I started to use a walking stick aged thirteen. My doctor prescribed me with pain killing tablets that were at a dose not available over the counter.  I go back for more physiotherapy and a few sessions of hydrotherapy.  After the sessions end I do the hydrotherapy exercises at the regular swimming pool for a while, but again probably not often enough.
  • Aged fourteen I got a wheelchair for use on my worst days pain wise. It was not for everyday use and I used it when I had to walk long distances or was in a lot of pain.
  • In my mid to late teens I started to get mild shoulder, neck and back pain. My posture started to suffer due to years of walking badly.  My limp and slightly sideways gait have made my back very slightly curved and my shoulders somewhat rounded.
  • In my early twenties I find out the pain is now due to osteoarthritis brought on at a much earlier age than normal due to the damaged state Perthes left my hip in, which I gather is fairly common in people who had Perthes. I attend a pain clinic at the hospital to try and learn to manage my pain better, but they do not tell me much I did not already know.
  • I saw an orthopaedic surgeon and ask about having a hip replacement, but was told I was too young. I continued to use a walking stick till I was about twenty-one.  I gave up the stick when it no longer helped with the pain.
  • Whilst I was at university aged twenty-four I got a frozen shoulder. It was very painful and made moving my arm and shoulder very difficult.  Physiotherapy helped a lot with ultrasound massage and daily exercises to do at home to help keep the shoulder loose.  I did the exercises every day for several months which seemed to help.  I was told the frozen shoulder was due to my posture issues from my hip.
  • I ended up on crutches aged twenty-four when my hip pain got so bad I could hardly walk sometimes without them.
  • I decided it was time I saw an orthopedic surgeon again whilst I was at university and this meant I could see a different surgeon since I was in another part of the country who might look at my case differently. I ended up being referred to two different surgeons (not sure why).  One surgeon was based at the main county hospital and the other at a specialist orthopaedic hospital.   Both agreed my hip was beyond resurfacing anymore and both agreed they would give me a total hip replacement if I wanted.  However the county hospital surgeon seemed less keen for me to have my hip replaced and tried to talk me out of it,  so I went with the specialist hospital since they seemed to think I really did need it doing and understood why I wanted it so much.  I initially met with the surgeon’s assistant who seemed to actually know something about Perthes and said he would recommend me to his boss straight away as a case for a new hip.
  • I had my total hip replacement on August 3rd 2011 aged twenty-five, a month after completing university. I spent three nights in hospital, one before the surgery and two after. The day after surgery I went to physiotherapy.  I had exercises given to me to do twice daily at home to build up the strength again in my legs.  I was given some equipment such as a very handy grab stick as I was not allowed to bend more than a ninety degree angle for six weeks, a toilet seat raise and a toilet frame to help lower myself on and off the toilet.  They were going to loan me crutches, but I already had my own pair from before.  On day one I used a walking frame to go to the toilet, but from day two I was on crutches.  I used crutches for about three or four months after surgery, and then used one crutch for a while.
  • About six to nine months later I went back to physiotherapy due to muscle soreness around the hip. I was given a new set of exercises to advance me on further with my progress.  I attended a weekly physiotherapy gym for twelve weeks at the hospital.
  • The GP referred me to podiatry as she saw I had flat feet. The podiatrist also said my feet turn out too much when I walk due to years of walking badly with my hip.  This may have contributed to my back and posture issues.  I now have insoles for my shoes with arch support and a heal slope to turn my feet slightly more forwards.  The insoles do make walking slightly more comfortable for me.
  • Just after a year after my surgery I managed a twelve mile sponsored charity walk. Aqua fit classes at my local pool helped me to get fitter and stronger.
  • I started to get mild posture pain again aged twenty-eight. I went back to physiotherapy and got exercises that I now still do daily to keep my back, neck and shoulders from becoming too weak.
  • I also go back to physiotherapy for muscle weakness around the hip as it was causing me pain on and off. I now also do a few leg exercises daily to keep my legs from getting too painful and stiff.

Remember that every Perthes story is different and what works for one person may not work for another.  Some people have more mild cases and totally recover, some go on to have mild pain as an adult, but at a more manageable level and some like me go on to need a total hip replacement.  I feel lucky to have my false hip and love how much more I can now do because of it.  I take pain medication much less frequently and even then at a much lower dose than before.  I am fitter now than I ever remember in my life.  I know one day I will need a hip revision, but I feel it has been more than worth it.

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3 thoughts on “My Perthes Hip Story

  1. Hi
    Thanks for sharing your story.I have had perthes disease since I was 8years.I am 35 now.unfortunately in my country at that time there was not much information on how I could be helped so I just survived with it as it was.
    I am now starting to have shoulder and back pains.I recently visited an orthopaedic who advised that wait on having any surgery.
    Still monitoring and will decide on surgery as time goes

    • I do not think it is just your country even now most countries do not seem to know very much about Perthes although here in the UK research is now being done into causes of it, but results are not yet complete. It is common to get posture pain from having a hip issues. I would suggest you see physiotherapy about that before it gets worse. I would also suggest if your hip is causing you a lot of pain most days to see a different surgeon about a hip replacement, ask around, opinions on having them young do vary.

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