Hi folks! To be honest the term \"Perthes\" is one I have only discovered in the last few days of internet searching for a decent hip surgeon in Australia.
At the age of 15 the head of my femur developed a huge hole in it (Perthes???? osteonecrosis????), the cartilage was intact and not damaged, although apparently the head of the femur was \"egg shell thick\" and no-one (3 orthopaedic specialists) were able to tell me what it was, or what was causing it - only that two of them thought I needed an immediate hip replacement! Fortunately I saw the third one, who still didn't have a clue what was going on, and after tests advised he'd need a biopsy - whilst in surgery he performed a bone graft - to try and buy me some time for technology to get better as only cemented metal hips were available at the time. This was 26 years ago.
Here's the thing - I've had 13 sets of Xrays over 26 years, and NEVER has an xray technician or an orthopaedic surgeon (I have seen probably 10 different ones over that time) ever mentioned these terminologies. They called it a \"cyst\" with no reason for its occurence. I've never had any problems with any other part of my body.
So, my question is, does this sound like Perthes to anyone, or has anyone had a similar experience?
Suffice to say that the hole in my femur is still bad, the graft just kind of filled it a little, the cartilage has worn now, and I now have severe osteo arthritis - the funny thing is that I've dealt with it for so long that the reason I'm looking into surgery is because my back is starting to pay the price of my damaged hip, and the tendon on the bottom of my good leg foot is getting stretched and damaged, my posture is stuffed, and I'm finally starting to feel really crippled.
Next question, does anyone know a surgeon in Australia that has really good knowledge of our problems? Would appreciate any tip offs or feedback.
Also, do Perthes sufferers usually get arthritis later on in life in the affected hip or hips?
Thanks.
Hi in answer to your question, does this sound like perthes disease, no sorry it doesnt, but i can tell you iv just turned 40 and 3 weeks ago had a total hip replacement. This is by far the best thing iv ever done in my life, im only 3 weeks post surgery, and from day one the old hip pain had gone, im just going through post surgery pain, but every day this is getting less and less, the secret is to find a surgeon who will give you a BRISTOL hip (this means no cement). in wales i could give you a name of a surgeon, but sorry cant help where you live, but the very best of luck to you, and if you get the chance go for it.
I am 57 and have had hip pain for 26 years; half a dozen orthopaedic specialists over that time have assumed that tha pain was coming from my back (having had a double laminectomy when I was 21). In May I was finally diagnosed with severe and advanced OA in both hips, with one of them containing 'cysts'. There is now some suggestion that osteonecrosis has developed, and I will have an emergency scan next week. I am unable to walk, sit, stand, lie or sleep despite being on morphine. The surgeon wants to replace both joints at the same time (or within a week of each other).
My (rhetorical) questions are: could this be Legg Calves Perthes' Disease? Has my future quality of life been compromised by the very delayed and uncertain diagnoses? Will I ever be able to walk properly again?
I am sure that there are people out there worse off than I am but I am getting very low indeed.
Message For Wendy.
Hi Wendy, a bit of a stab in the dark really as your entry was some while ago but hopefully you will revisit.
Long story short I am 43 years of age, I was diagnosed with Perthies when I was seven, went through most of my younger years in and out of hospital, Traction and 2 years of Calipers and such like.
Anyways, I have been quite fortunate until now, where my left hip is locking regular and am in some pain. I have just started the process of looking into a hip replacement, already been for blood tests, just awaiting results, and it was a real treat to hear how successful your OP was, and hopefully still is.
You mentioned the Bristol Hip of which I know little about, I also live in Wales so it would be good for the contact of your specialist if possible.
Really pleased for you and hope all is still well.
Shaun