Legg calve perthes disease

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I am currently 25 year old female. I was diagnosed at age of 3 with LCPD in BOTH hips. I had major surgeries at age of 4 on my right hip. Currently I have seen 2 specialist about a hip replacement. First one wouldn't even talk to me about it because it is so complex he sent me to someone else. This dr said nothing is going to help and i have to wait until i can absolutely no longer walk. And that's it. That was 1 year ago. The pain keeps getting worse and my regular dr wants me to start physical therapy and all of these medicines to help thepain. I heardthat physical therapy could be worse for it. I have VERY LITTLE cartilage in my joint. The pain is unbearable 80% of my days. I have 2 little boys. My quality of life sucks. My question is has anyone done physical therapy with this sort of thing? Did it help or hurt worse? I want the surgery but the drs wont diot. I'm supposed to use crutches as much as possible but that is unbearable too. Anyone have any tips or advice that worked for you?

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  • Posted

    I am sorry to read about your situation.

    I am going to lean on the side of patients’ rights here.

    This will depend on where you live - rules are different in different countries.

    But, in the U.K., your quality of life is significant.

    I was diagnosed with LCP disease at age 10 and two years ago at the age of 44, finally had an operation (total hip replacement), to alleviate the chronic pain.

    In the U.K. you are entitled to be referred to any doctor anywhere (pretty much) and entitled to a second opinion.

    I found physical therapy pointless. I wonder if there is any research on it?

    You have family. Reference that when you speak to your doctor. Explain how it affects your life.

    Tell them you have not been able to sleep, that it is affecting your family life, that you have tried pain killers and nothing touches it....explain clearly what it is like on your WORST days or nights.

    I hope you find a sympathetic medical ear

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  • Posted

    I would recommend you go see Dr Roy Davidovich and/or Dr Pablo Castaneda at the hospital of joint disease in nyc for they are top game in this field .

    As to Physical therapy, it’s both your and a professional’s responsibility to work around the pain and buff up as much muscle as possible. The deal is to explore what you can and cannot do with caution in order to lessen the impact on the bones  and to improve  your physical ability while cautiously challenging the boundaries of your physical capability’s  (losing weight and gaining muscle is the primary objective)  . 

    It’s hard and frustrating and it only helped a little for me , though some people say physical therapy and stretching on a regular basis helps them a lot.

    LCPD sux but it’s a hell of a ride! 

    Good luck 

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  • Posted

    Hi Daphne.  My son was diagnosed with LCPD in both hips when he was 8 years old.  He suffered so much for over 30 years.  Barely able to walk and in pain he never missed work. Finally last year he had 1 hip replacement.  A few months ago he had the 2nd hip replacement.  His quality of life is finally improving .  I can only imagine how difficult it must be taking care of children with the pain you’re experiencing. But don’t lose hope.  They’re are doctors who will do your surgery and your quality of life will improve dramatically.  You are in my prayers. God will open doors for you.  
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