Please help had perthes as child now 30

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They found out about my Perthese when I was 7 I had hip surgery that same year.when I was 12 I had both my hamstrings cut and stretched.really when I was younger I was ok but now at 30 I'm really bad off I can't play with my son, can't hold a job, don't receive disability, can't walk far at all without getting extremely tired and winded.My left hip is the one that had the surgery but both my legs constantly hurt and most of the time I need a hand getting up from couch, table.my right leg our almost 2 inches longer then my left and within the last year I've developed a back pain on my lower left side that when it kicks in I gotta grab something.needless to say I'm depressed as heck and really got nowhere else to turn.I was hoping to hear if there's anyone that knows of any treatments anything at all besides being tied to a wheel chair at 30? Or maybe I got some other issues going on that having perthese could bring? Cause from all I've read it seems a good number of people made it out ok..me not so much..and as far as disability? Is it possible because I've been turned down never fought for it cause I never really wanted it always wanted to make my own way but unfortunately things have changed and I could use the help tremendously.I can't even get law firms to take my case on..soo if anyone anywhere could write back about all or some man I'd greatly appreciate it cause I've felt alone for along time.thanks everyone,Danny

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  • Posted

    Hi Danny, Sorry to hear about the challenges you have endured for so long. Can you tell me what kind of physical therapy you have experienced? Did you have results from PT? My Perthes difficulties was no burden compared to yours but I found physical therapy and prayer to be the answer for me. Lou
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  • Posted

    Hi Danny

    So sorry to hear your story, it sounds like you have had a rough time. My son is 4 and had a limp for a couple of day the second x Ray howef a chip on the hip and consultant thinks it's now perthes. We have mri in April. Can I ask how your perthes started off. Not sure what's ahead for my son or wil l it go away

    Thanks and hope things look up for you

    Take care

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  • Posted

    Hi Danny, I am so sorry you are having to go through this.  There is not a lot of information about LCP out and about.  What I have leaned is that each and every case is so different and the degree of LCP and problems later in life is also very personal. I would seek another opinon from an expert. A doctor who deals with LCPD a lot, I went to childrens hospital as a child, and then UCLA. They have doctors that only deal with LCP. There must be something to deal with all the pain you are in and yes pain brings its old friends with him, depression. Its easy to get caught.  I have a couple of ideas. For income, gather all your medical records related to this and go to one of the lawyers who help people get disability.  Its worth a try for sure. Then try to get a doctor who can tell you what is going on, after you get this info, while you are waiting to see about the disability you could take the doctor information to people who do natural medicine.  Perhaps look for pain reduction, like actupunture, or chiropractic, or herblogist.. If you have any or lots of inflammation you can find an anti-inflamation help. Try one at a time so you can really tell if it is doing any good for you. Not everything at once. Remember depression makes us do strange things and it sabatoges us from looking for help.  I hope you are able to find something to help you.  Slow and steady finds the answer, I know you can do it...You are stronger than you think, look at all you have already gone thru.  All my best for you, and if you don't mind I will say a prayer, it wont hurt and it could help.  Take care.
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  • Posted

    Hi Danny,

    Like you i was also diagnosed at 7.

    Diagnosis: bilateral with left hip socket collapsed.

    Problem solved at the time: Surgery - reposition of the left femur.

    Perthes has effected me in different ways throughout my life - bone chips away, regrowth ect. Adulthood - osteoarthritis

    I'm 21 years old now and have had my first hip replacement. My choice and reason for replacement was pain. General mobility was good but standing long periods of time, biking, walking, holding a job, pain killers asigned were not working, felt like bone chips, stiffness and tiredness, one leg 2cm longer than the other.

    After cutting out my hip socket it was revealed that cracks were on the top of it. This was unseen by xray.

    You are right about the statement of others seeming to pull through easier with Perthes. Until reading this i havent found anyone at a young age who sounds like they are worse off than me.

    I think theres no other way but to talking to surgeons to get your options. Physical Therapy is an option (In my experiance my muscles were really weak until i noticed the difference in post op PT).

    Always remember it is different for everyone and the best option for your well being will be proposed first.

    Good luck and keep me updated.

    Laura

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