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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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My Experiences of the NHS Mental Health Service

 

I would like to share my experiences of the NHS mental health services.  I have found it a patchy service at best, with very little flexibility.  I am not saying that you should not seek help with mental health issues, there are some positives in the mental health system, but it is far from an ideal service and needs a lot of changes to make it work better for more people.

My first experience of therapy for mental health came aged eleven or twelve when I was referred by my GP after my mum asked.  I think she had to ask more than once.  I was diagnosed with OCD by the psychologist.  I had talking therapy once a week, often with my mum.  I got a new psychologist later who put me on medication for my OCD.  I am still on that medication.  I think it used to help, but no longer think it does anything for my OCD.  No doctor willing to properly review it.  One doctor did agree it probably did nothing for me now as I would have become immune to it and put me on a much lower dose as you can’t simply come off it. I know it is one of the hardest medications to come off and the side effects of not taking it for three days once when I ran out at university were awful.  I do not know if the medication has any side-affects as I have been on it so long I am no longer sure what is me and what is the medication.  It could be one of the reasons I am tired so much and would love to be able to try life without it, but right now that does not seem possible.

I started group therapy once a week for a couple of terms.  I am not sure if it was helpful or not, but I liked going as it got me out of school for the morning.  The trouble was I did not fit in with the others very well and some of them could have been a bad influence.  Some of the girls tried to talk me into smoking with them during the break, not that I ever did.

Autism, more specifically Asperger’s syndrome were raised as something I may have.  I can’t remember if it was my mum who brought it up or if my psychologist mentioned it first, but I remember it being discussed.  However I never was sent for testing, which I do not understand as I clearly had major issues and think it would have helped a lot to have a formal diagnosis.

At the age of thirteen I left my first secondary school as I was being bullied very badly and the school was not really addressing it properly, nor were they helping me with my mental and physical issues which were clearly getting worse.  I ended up spending a term in a new education program for children struggling with school run by the childrens mental health services.  It was just a classroom in the mental health services building and not really a school, but it was better than nothing.  Then I ended up in a special needs school, supposedly for those with physical disabilities, but I think my hip was just an excuse and really it was the fact that no other school would have me and the education authority did not know where else to put me.  I think my report from my previous school may have put other schools off.  I admit I had become very difficult to teach by this point, having become very angry a lot of the time and not really being able to handle it.

I had anger management therapy for a few sessions with a mental health nurse.  This was based around mindfulness.  It helped me a little bit, but mindfulness only works if you can feel the anger coming before it is too late, which often I cannot.  The trouble is I tend to go from fine to angry in about a nano second, which gives me no time to put the mindfulness in place.

When I turned sixteen I left the children’s mental health service and that seemed to be that.  I was not transferred to adult services.  Some years later I asked my GP for support with my mental health and I was offered counselling through my surgery.  It was not very helpful as I did not get many sessions and I do not think the guy really understood my problems.  A few years later at university I had some counselling that was more helpful to me.  I think it helped that she was used to working with students so it was more tailored to my situation at the time.  She taught me about mind maps, which helped with my coursework to make it seem less daunting and stressful.

Since then I have gone to my GP for support with my mental health and been told about the anxiety and depression service.  I have tried this service twice, once for depression and once for my OCD.  As a self referral service I found it hard to get an appointment.  Last time I had to ring them three times before they answered the phone and they totally ignored my emails.  For depression this is not helpful, a depressed person is not very likely to keep trying once they fail to get through.  Once you do get an appointment you are told you get twelve sessions mostly over the phone.  I found phone therapy very unhelpful as it meant I could sit at home and wallow in my depression or lie about how much of the homework I had actually done.  I found the phone calls quite uncomfortable and would just say what I thought he wanted to hear to get it over with as quickly as possible.   When it came to therapy for my OCD I found it pretty much useless.  The only kind of therapy they seem to offer is CBT (Cognitive Behavioral Therapy).  At first the program seemed to be helping a bit, but I soon realised it only got rid of one OCD trait to replace it with another.  The therapy never looked at the causes of my OCD behaviour, just the individual symptoms.  Despite specifically asking to have only face to face appointments, I was soon given only phone calls, which were not very affective.  The next stage was to sign me up with an online program that only therapists could add you to.  Some of the exercises on the program required that you logged in daily to the site.  I did tell my therapist that I was in the process of moving and had no internet in my new flat, but despite this she kept on at me to use the program.  Some of the exercises were simply impossible to do in the local library where I often access the internet.  In the end I gave up as even the exercises I could do seemed to not be helping.  I have since been told that CBT will not help me anyway as I am autistic and it hardly ever works for people on the spectrum, so that was a waste of time.  No other service is offered for OCD on the NHS in my area according to my GP.

Last year I was finally diagnosed as High Functioning Autistic or Asperger’s after my mental health assessment flagged it up as something to get tested for.  I was about thirteen when it first came up as a possible diagnosis and it took till I was thirty-one to be tested!

I find it hard to get a GP or anyone else in the health service to take my mental health problems seriously.  I have never self-harmed or been suicidal which maybe one reason I get so little support, despite finding my anxiety and OCD crippling some days.  I have never had a psychologist as an adult.  I did get some support from one GP after I cried in an appointment and asked to sign on as too sick to work.  She got me a mental health assessment, the first and only one I have had as an adult.  This did help as it led to some positive changes in my life.  However I think it helped that I had changed surgeries not long before this as my previous surgery had always seemed to dismiss my mental health problems.

I think mental health services need to be more flexible to meet a patients needs.  People end up costing the NHS more if they are left till they are so ill they need hospitalizing or longer term care.  CBT and mindfulness therapy is proven to work well for a lot of people, but it is not going to suite everyone, yet they seem to be the only things the NHS offer.  Even if it does help, you get so few sessions that as soon as you make a tiny bit of progress the therapy runs out and you go back to square one.  I think the NHS would save money if they invested in better mental health services, as some physical symptoms can be brought on by mental health issues being left untreated.

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