perthes at 21 yrs

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Hi my Son is now 21 yrs of age and has been battling with perthes since the age of 5yrs. He has bi-lateral perthes. the left leg was the first and this was treated with non weightbearing, callipers and restricted activity and is now near normal, at the age of 8 it appeared in his right hip which he had a surgery ( varus osteotomy) with further surgery to remove plate and pins. He still struggled with pain and had hinged abduction and leg discrepancy. He was then given a valgus osteotomy as a salvage operation and further surgery to remove plate and pins at the age of 14. He struggled on through school still in pain. He has now grown to 6ft and this has produced more problems as his thigh muscles do not work probably due to the position of the femur that the valgus placed it in. The ball of the femur is mushroom shaped and the main pain is directed through the knee which gives way unpredictly causing him to fall. He has been told by a specialist that he is too young for a hip replacement and to grin and bear with pain management for as long as he can. He has been able to do office work part time, but even this is painfull do to the sitting position.His left leg does give him trouble from time to time. Nobody actually follows perthes up into adulthood as once you reach 18yrs you are discharged from the childrens hospital and left to the care of your GP. There should be a call back system for check ups even if it was to help doctors to understand the desease. I don't know if surgery benefitted my son or if treatment with callipers was better, all I know was I could not bear to put him back in them for another 3 years and did what I thought was right at the time. Has anybody around this age experiencing similar problems ?

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  • Posted

    Hi

    I to have suffered with perthes. i was in plasters for 5 years. Since then i have has several operations to round the head of the femour which i had done when i was 15. now at the age of 30 i have been told that the femour has gone flat again and the consultant is thinking of a hip replacement. My thoughts on this are not good as they only last 10-15 yrs and you can only have so many done without this procedure not longer being effective. i am looking at alternatives like encasing the femour in metal or a new thing i have heard of is bone marrow being used as this regenerates itself.

    i do feel sorry for your son because you look \"normal\" noone actually realises what pain you are going through.

    The way i get through it is always try to be positve and smile even when i dont feel like it.

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  • Posted

    Hi there, I've just read your story, could you let me know what alternatives you have found for your femur - I'm 41 and facing the prospect of the 15 year longevity of an implant - I'm hoping a surgeon can do \"resurfacing\" - but I don't know if my femur head is strong enough.

    I'd love to know what technologies you have found out about - what's the \"encasing\" thing????

    Thanks.

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  • Posted

    Hi

    Sorry for they delay in getting back to you.

    Someone i know was due to have a hip replacement but the waiting list was to long on the NHS so he went private. At the hospital they told him of him resurfacing which saves the whole hip replacement operation. he has now had this operation and he is amazing he could even walk down the street but he has recently done a sponsered walking 1/2 marathon. if you put in your search engine hip resufacing there are loads off web sites.

    As for the bone marrow i believe this is only in the trial periods my cousin works in a hospital in Australia and they are trying this out the bone marrow is injecting into bone which is denorating which then grows to replace patients bone.

    I hope i have helped a little if you need anymore info let me know i know it can be like banging your head against a brick wall with the NHS in this country.

    Clare

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  • Posted

    Hi Lin, I’m a 22yr old female and still suffer badly with Perthes in my left leg. I was 11 when I was diagnosed. I’ve had 3 Osteotomy’s to date – the last one was in November last year, and I’m currently waiting for a date to have the pin and plate removed again. These were only done as a why of making me a little more comfortable.

    I was told I would need a hip replacement by the time I was in my mid-twenties, but they decided not to do this just yet and wanted to prolong the need for the replacement for a long as possible – hence the current osteotomy.

    I too suffer the same type of problems as your son, I’m in pain if I’m standing for too long, I’m in pain if I sit down for too long. And I find that my knee will often “give way”… causing me to fall. I’ve also found that as a result of the limp and how I tend to twist my body to compensate for my left hip, I’ve also started to develop back pain and a slight curve in my spine.

    I was originally discharged when I was 18, but the pain became so bad I contacted the hospital again, which lead to my current operation. If your son is in a great amount of pain, maybe he should get referred back to his specialist again – It has helped me.

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