perthes in the fifties

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I was 7yrs old in the 1950's when I was diagnosed with Perthes in my left hip. It took ages before they realised what I had because it was believed that girls just didn't get Perthes. I was in hospital for 6mths and in calipers for 18mths. I haven't been too bad but have what specialist calls 'a slight imbalance of the spine'. My back and hip ache quite a bit more as I'm getting older but no-one can tell me if I should take it a bit easier or make sure that I get lots of excercise. Anyone else had the same experience?

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  • Posted

    I was also diagnosed with Perthes in the 1950's. My mother was a nurse so she pursued the medical issues when I was unable to walk or skip without pain. I remember spending a long time in traction, then a wheelchair, then crutches. My sister was also diagnosed with Perthes at about the same age.

    I am now in my mid50's with increasingly disabling hip pain. The pain gets so bad that I am unable to sleep, much less do all of the things that I enjoy. My family DR does not seem very aware of Perthes, or of any problems in adults following Perthes.

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  • Posted

    Hi,

    I am a 48 year old male whos was diagnosed with Purthes disease of the left hip when I was 4/5 years old ( 1964/5). From memory I was hospitalised for 6 monthe with my leg/hip in traction.This was followed by the wearing of a metal caliper on my left leg and a built up shoe on my right leg. The aim being to minimse the load bearing on my deficient hip.

    I have over the years taken part in all manner of sports and led a full and active life.I have played football , rugby,cricket,athletics,cross country running and squash for example. I have lived my life until the last 12months as if Purthes Disease of my left hip had never occured.

    In saying this I did suffer some pain in my left knee after the odd rugby match which I generally just shrugged off. With hindsight this was proberbly refererred pain due to my abnormal hip joint.

    I have not played any serious sports for a number of years having suffeered with back pain which was only \"sorted\" after a year of treatment by a Chiropractor.

    Having sorted my back problems is was not long before I started having pains in my left knee,hip and upper leg muscles.The pain was random and unpredictable but gradually become peresistent and more intense. This persisted for about a year and was affecting my day to day life.

    Being fortunate in having medical insurance I was quickly able to see a specailist who after investigation (scans/x ray) eliminated the knee as the source of my problem. Cortisone injections into my left hip followed as I was not at that stage prepared to accept the problem was related to my Purthes diseased hip.

    The long and short of this tale is that at age 48 I have undergone a full hip replacement due to my childhood illness and am currently recuperating 2 weeks after the operation

    For nearly 41 years I lived my life not even thinking about my hip.It was an immense shock to realise that my childhood Purthes Disease had come back to haunt me.

    But in saying this I have not been physicaly held back and have enjoyed the most sportingly active years of life to the full.

    Perhapa I was lucky and my Purthes was recognised early and the treatment was successful. My parents were warned that arthritus could be a problem in later life.I have to admit the Docters were spot on.

    It was only after seeing the recent x rays of my hip that I fully realised what Purthes disaese was all about. Haveing your hip joint referred to as deformed by the consultant was an emotional shock and only after viewing the x rays myself could I fully understand his use of the terminology. With my new hip I look forward to a further 10-15 years of pain free kife.

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    • Posted

      Hello Kevin,

      Sounds like we have similar stories. I have some persistent pain and thought I would do some research. Wow! I'm too never heard the words deformed until today. I haven't seen a doctor yet.

      How's the hip replacements? Any complications? Hope all is well!

      Hope to hear from you!

      Patty from Ohio

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  • Posted

    I have a 9 year old son who was diagnosed with Purthes two years ago. His regular doctor just thought that one leg was longer than the other but after having a Playstation fall into his lap from a shelf and receiving x-rays, she noticed that something didn't look \"right\" in one of his hips but didn't understand it, and sent us to a specialist.

    Kierans good hip looks like a healthy scoop of ice cream, his Perthes hip looks like the ice cream scoop melted away to just a small dome. The specialist told us to expect a full hip replacement at age 45. Also, when he hits puberty, they want to tack his healthy knee in the growth plate to slow it down for his shorter leg. If this leg height difference happens, I'm going to request the other extreme... stretch his bad leg. I've seen it done with dwarfism.

    Other than Kieran being stiff in the morning, he lives a completely normal, very active lifestyle for a nine year old. Soccer, baseball, etc. It hasn't slowed him down at all. If he runs for extended periods of time, he'll start to favor his good leg a little but if you didn't know there was a problem, you prolly wouldn't even notice it.

    Kieran is the only person in our family that has ever been diagnosed with the disease.

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  • Posted

    I was diagnosed when I was 5 years old.  This was in 1957.  Personally I don't believe there was anything wrong with me as  I was a complete tomboy, anyway,

    the treatment was that I had to use crutches for one year and my leg was held up for that period of time by a brace that I wore and it attached to my shoe which held my leg up. Thank God  I haven't had any issues since and now it is 2015.

     

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  • Posted

    Hello, Sorry to hear about all the problems you are having.  I can only tell you what I have learned over the years.  This disease is not very common, there is not a lot of knowledge out there. Usually the doctors excuse themselves and go look it up as I have had this done to me several times. All cases are slightly different, due to the fact that the bones stop growing and then regrow.  So knowing that your hips are different than mine. So what this means is that every case is slightly different.  Look at a normal hip and look at your xrays. Try to find someone who also has legg calf perthes to look at their xray.  Why am I saying this?  Because a person needs a doctor who knows this. If the doctor treated me the same as you one of us would be in pain for sure.  I have read and heard and from experience that getting older puts more stress on our bodies.  I try to do stretching, try to keep somewhat flexable, as much as possible, and keep moving. It doesn't have to be hard physical excercise but only what feels good to you. Also I take a anti-inflammatory.  All the body parts around the hip joint are being stressed because it is slighlty out of position.  This can and may cause horrible pain, in walking or just sitting still or at night when we try to sleep. I read some of the other replies here on the sight, even here some have no issues and some are having a horrible time. each case is so different.  I feel so bad for the pain, it is scary and depressing and causes one to want to give up.  remember pain is like a wave, and hang on till it moves around or eases up a bit.
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  • Posted

    Hello Janice2,  Excercise depends on your personal condition, for example if your hip is rubbing on bone and making condition worse with movement, then by all means don't do it.  Learn all you can about your issures then you will know if you need to rest or not.  I pretty much protect my hips and lower back the best I can.  Stretching is good to do, running is not.  Look at your xrays, ask a doctor who has handled many cases not one who has to look it up in the book while you are in the waiting room.  UCLA has some good specialist there. Its like you wouldn't go to a heart doctor if you are having eye issues.  LCPD is not really known by a lot of people.  Sometimes a shoe lift helps, sometimes a heating pad helps.   Here is my point, listen to your body as only you can. If you go running how did you feel? Were you unable to walk for several days without pain or did you have lots of pain?  That tells me running may not be that good for you, perhaps just taking a walk or riding a bike is better.  You do want to stay moble.  From the people I have been listening to it seems that as we get older there is different or more pain; Not everybody, depends on degree of Perthes.  I go to the chiropractor to try and find relief from the pain. I sleep with pillows, I take anti-inflammatories. I also go to actupunture for help with pain relief.  Pleast try whatever you need to try til you find something to ease the pain.  LCPD is very stressfull. Not too many people know about it, not a lot of information on adults who had it as children, and not a lot of regular doctors who are aware of how to help. Go little by little try excercise  and that evening or the next day listen to your body and see how you feel, I think that will help! Hopefully? Another hard issue is that no one who is looking at me sees anything.  No one by looking at me can tell the pain I am in or that I have LCPD. If you watch me carefully you will notice a limp when I walk. I tried to be normal? I never told any one except my bff about my condition.  I am not sure that those decisions I made over my lifetime were correct? I just tried to fit in. These decisions have caused me grief and heartache. We try to live our life the best that we can, I tried.  Anyway I support you, I wish you well, and I hope you find the answers you are looking for.  Joy, Love, Happiness
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  • Posted

    I have been told stay slim. Do muscle building exercises to support around the knees, hips and lower back. Like straight leg raises while seated. No bending of the knee. I was also told, when I asked about my frustration with my lack of mobility in the affected leg, "Try not to move the hip very much, if at all." That was my GP. Physio said, dont do anything that is painful when stretching/being active. So I'm stuck. I have pain, I need to move. Moving is bad if there's pain. So if I take pain killers, I could be unaware of damage I may be causing myself. So...I bicycle. To work, socially, and during my free time. I never hurt of the bike, I always feel "strong and capable" and its fun. In retrospect and regret, I should have been diligent with the daily stretches that I was given after recovering. But conflicting advice is given, the easier option is usually chosen, especially if you're a kid! My GP said I can take the advice of my chiro (lift in shoe, adjustments, stretches) or leave, "There is no evidence of Chiro therapy making any serious differences in rehabilitation. " Bull! Parents of children with LCPD? Ensure your children do what the physio/chiro specialists say! I have never been able to sit cross legged my whole life.

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