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Acetabular Dysplasia following perthes as a child

Posted , 3 users are following.

Mum44
Mum44

Like everyone else here, it's just so great to have found a forum about Perthes! I spent many years not having anyone at all to discuss it with!

I had Perthes aged 7 and surgery aged 11. I had both pelvic and femoral osteotomies.

But fast forward to today. I'm now 44 (female!).

It's been getting harder to keep the pain away, I have to do less of everything and for shorter periods so as not to bring on an attack.

BUt when I have overdone it , it is excruciating and totally debilitating for a couple of days to a week. Only thing that helps is to rest and do nothing!

So I went for an X-ray and it shows \" Severe dysplastic acetabulum and what is left of the femoral head following perthes.\" I did get to see the xray and my head of femur is just a large flat mushroom.

So am being referred back to the RNOH but I am really keen to find anyone else who went on to develop this dysplasia and has the femoral head deformity.

I think I'm trying to guage for myself how bad I've got compared to others.

If I keep my activity levels down, eg avoid walking further than half a mile at a time, or driving for more than half an hour at a time etc then during the summer months I can essentially be pain and symptom free!. Different story in the winter!

I am fortunate in that I am self employed and work from home and so have been able to drastically reduce the amount of walking and driving I do.

I am not at the stage of having pain all the time. Only when I have overdone things.

HOwever, thinking about it... I do get an attack now if I have to sit for a long time eg on a 2hr flight... so it's no longer just when I've done lots of activity!! sad

Sorry, I've rambled on!! I hope some of my post resonates with the older peole on this forum and would love to hear anyone else's story of progress in adult life after Perthes.

0 likes, 3 replies

3 Replies

  • June_1961
    June_1961

    Posted

    I am a 48yr old female, who has just found out today 27.10.09 that I have Perthes Decease.

    At 4yrs old I had 1 leg 4\" shorter than the other, and was constantly in pain, and carried everywhere by my mother. Eventually I was hospitalised for 1year, where I underwent major surgery to remove gangreen from the infected hip, had metal pins inserted to lengthen the leg, 3 skin grafts and 42 stitches which are still visable. Like many others on here, I had the leg brace and cast to keep the hip in the correct postition, traction, and cast, and after being allowed home, spent the next 12months on the 'studio couch' where a doctor visited me daily to inject morphine into the back of my knee cap. I remember this time very well. The next 12months I recieved physio to re-build the wasted musle in both my legs.

    No explanation of perthes was given to my family, but was told it was a genetic disorder, which I believed till today.

    Suprisingly I had a normal sporty childhood, and didn't experience any further pain until I was heavily Pregnant at 23yrs.

    I didn't experience to many problems after this, just the winters, and damp days, with groin, back and knee pain,and of course the limping, which i was told was artheritis, until about 8yrs ago, when I was totally immobilised by the groin pain, but was bleeding very heavily, cause endemeterosis.

    The inflamation in my womb was putting strain on my pelvis, which in turn was putting pressure on my hip.

    I have really struggled for the past 8 yrs, and with unsympathetic help from GP's I 've just got with on with life, until today.

    Last friday whilst in bed my hip totally locked and the pain was excrutiating, now everything I've gone through my tolerance of pain is high, but i was vomiting and my temperature was soaring, and I fainted with the pain.

    I went to hospital, where I was told to go home and take Ibuprofen and rest, and if I didn't feel any better within a few days to se my GP, i was disgusted.

    I went to see my GP today, who now informs me I had perthes decease,as a child, which I have never heard of !!!! I'm totally flabagasted as I requested to go for an x-ray, and the response was it wasn't necessary, as Perthes doesn't return, but the joint can occastionally get inflamed, and the same response, rest, and anti inflamatory's prescibed.

    My leg has started to shrink again.

    After finding this site and reading other experiences, I don't think my doctor knows what shes talking about.

    Can anyone give me any advice please.

  • Guest
    Guest

    Posted

    Wow, they just diagnosed you at 48? I'm a 15 year old female and I diagnosed in 2001 with Perthes in my left leg, at age 8 or 9 (can't remember, I've slept since then :lol: ) But I've been in traction 5 times in my life, been offered fusing more times than I can count, and been offered the full leg cast more times than I can count. Now, 8 years later, they finally agree to give me a hip replacement because of fears of further damage to my leg, spine, and other leg. The only hope I can give you, is look for someone to discuss a hip replacement with.
  • Guest
    Guest

    Posted

    Hello,

    I'm from Belgium and I was surprised to read about your problems. My son (now 11) has also Perthies. He was 3 and a half when he got it.

    My aunt has also major hipproblems.

    She has already had two new hips. Because the first time her leg wasn't put straight so after a few years she got lots of pain.

    When the diagnostic my son a experience how important it was to find the right doctor for treatment. If they don't have enough experience they do all the wrong things. So my advice to you : go and search till you have a good doctor who had a number of Perthies patients.

    Getting a new hip is a huge operation that should be done well at first time otherwise you suffer more after the operation then before.

    I suspect that years back Perthies was less known and several doctors treated patients in wrong ways. The result : many persons with hipproblems.

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