OMG there is other people with perthes here!

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i have never spoken to anybody else who has sufferd with perthes before im so happy i have found this site.

i suffred from perthes as a child i had to major operations had metal pins in my leg for a long time. around the age of 7 i i was told at the age of 7 or 8 i may need a hip replacement in my 20s or 30s am now 25 and up untill 20 i lead a completly normal life was very active played football all the time basketball went to the gym i had the ocasinal aches and pains but nothing that stoped me doing what i wanted. aroud 21 i started noticing my hip would stiffen up in the morning when i woke up and would have to kind of strach it about which was quite uncomfatbule for it to return to normal i didnt thing much of it really but gradualy month after month this started becoming more frequent and more stiff i also was getting discomfort when walking bending gernaly anything that involved moving my hip was becoming really umcomfy. im now 25 and its gotten a lot lot worse every morning i wake up and my lef is so stiff and has a very weird but seriously uncomfatuble aching pain and shooting pains running down to my kneee this can well over an hour and evern trying to streach dosent seem to help anymore! i used to limp because 1 leg is shoter than the other evern tho i was in no pain i walked with a limp now i have to limp everywhere because i cant put weight on my hip without it feeling like its going to collapse.

im hoping im not the only one who has been throught this in their 20s can anyone here relate to my story?

i have been to the orthopic hospital and i have just been told you still have a nice amount of cartalage on the actualy hip and as your still young we would sugest you tryy and hang on as long as you can, im so depressed about this all now i cant work and i dont claim any benifits due to fear of not been belived my family are great they help me out with money but its stoping me living my life :cry:

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  • Posted

    Hi there,

    I can fully relate to your problems. I was diagnosed with Perthies at the age of seven, went through the callipers / wheelchair and crutches sinario, and am due a full hip and socket replacement in 3 weeks time if all goes to plan.

    Anyway, after coming off the callipers I went through a very good youth like yourself, playing football, bit of martial arts and stuff, but there does come a time when your activities are limited (fact). This can happen at any time in your life. I am now 44 years old, and still hold quite an active full time job (with lots of pain of course) but tend to just get on with it.

    As time goes by, the ball joint does soften and, well mine is now mushroom shaped and the socket is shaped like a 50 pence piece as shown by the xrays. The bottom line is that there is little treatment available really, apart from a replacement. There is a chap on this site who claims that physiotherapy is the way forward which may be correct, but if your in the advanced stages of perthies it would just be too painfull to go through. We are just that 1 in 10,000 kids who it has affected.

    Having said that, bit harsh I know, but you must keep your head up, thats the main thing, and not let it depress you. Please remember there are others out there going through the same as us and its always good to talk. You have a very supportive family which is excellent, such an advantage. Your next step I would suggest is to go and see your local doctor and almost demand an Xray, just to check the progression of Perthies, and remember with modern science there is always new things on the horizon which may help. I know the pain you suffer mate, as my hip sometimes locks for up to 7 hours at a time, and bone on bone is very painful.

    Swimming will help your cause and so will rest, but I cannot really suggest anything else.

    I wish you all the very best and remember SMILE AND KEEP YOUR HEAD UP.

    Take Care

    S

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  • Posted

    hi to both of you,

    I also can fully relate to what you are both going through. i was dignosed with Perthes but not until the age of 13, by which time the disease was in late stages and hard to treat. my hip was already quite deformed. following a spell on crutches the bone healed to an oval shape and luckily I was only left with limited range of movement and slightly wasted muscle in the affected leg.

    I too was quite active for many years and have 3 children. I am now 31 and around 5 years ago began to have problems again, mornings are worse the pain goes from my groin to my knee cap and my hip feels like it will collapse if i put any weight on it. It can also lock up for hours. i still manage to hold down a job as luckily I have an understanding employer.

    I agree you should push for xrays to have a look at it again I did. I too am now waiting for a total hip replacement.

    Keep smiling your not alone. I am amazed to find so much information now about Perthes there was so little a couple of years ago.

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  • Posted

    Hi there, you're not alone. I had 18 months of hospital in a frame, then 6 months of calipers. In the last 2 years (I'm 46, btw) I've suffered increasing pain, it hurts to put my weight on my hip, so going upstairs/uphill/getting on buses/getting into cars has all become painful and problematic. I hardly walk much now because after a while my hip hurts, as does my back, doubtless from walking with a limp. I'm about to have a referral to an orthopaedic specialist. I've always known that arthritis would kick in at some stage, but now it has, I confess to feeling quite miserable about the limitations now placed on my getting around. And, of course, I'm putting weight on because of the reduced exercise, which is not helpful either. Do try to get as much help as you can from your doctor, push for physio, it's possible you've got sciatica because your tight hip muscles are pressing on the sciatic nerve; don't stop doing non weight-bearing exercise. KOKO!
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  • Posted

    same as you i ave never spoke 2 any1 else ith perthes

    I am 15 years old, and hav suffered with i since i was 6 yrs old, i suffer with the diease in both hips and have been through serveral operations 2, i am under the royal national orthapeidic hopsital in london due 2 the serverity of the conition, lol yeah we are the very unlucky few to suffer with diease, as only 1in40,000 girlssuffer with it, where as 80,000 girls suffer wth it in bot hips. my most recent operation involved having the femer, broke from the fermeral head, to hav the head re-shaped and have it then put back, being pinned and plated bk in place, im due to have a few more operations before i am old enough to have a full hip replacement, although i am in alot of pain most of the time, i try my hardest not 2 let the diease dominate my life, so to ay1 else out there, i jus wanna say, \" YOUR NOT ALONE, SO KEEP YOUR HEAD UP AND KEEP SMILING :D

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  • Posted

    I sympathise with all your experiences. I had severe hip and groin pain as a teenager. I was told by my mother it was growing pains. I am now 44 and after falling off a chair I was diagnosed with old perthes disease and a broken hip from the fall. I am having a hip replacement on thursday my mobility is so poor that I cannot physically stand. I hoowever consider myself lucky because although I would over the years suffer from stiff and painful hip syndrome during cold or wet weather I was not hospitalised. It was just something I endured but I am so glad that I now it will be reversed by surgery.

    After spending time with physios and OT last week, they will apparently have me up and walking on Thursday afternoon, something that I am looking forward to. Having two daughters, going shopping isnt much fun in a wheelchair.

    I would encourage anyone who is offered surgery to go for it, becuase I wouldnt want anyone experiencing the loss of independence I did recently.

    The one thing everyone said may have helped me was my great love of yoga, which although I can't do it physically at the moment the breathing expercises has helped with the pain.

    I am so glad I discovered this website, I have spent the last six months feeling very aloone because no one seemed aware of this condition.

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  • Posted

    Hello, just to say that I am having a hip replacement later this year. I was quite shocked at the sight of my x rays, my femoral head is bulbous and deformed. No wonder I can't do the Lotus... ! I am hoping to be rid of some of the pain, tho I know that there's no magic bullet.

    Take care everyone

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  • Posted

    [quote:ab1c2d3a80=\"Deb1962\"]Hello, just to say that I am having a hip replacement later this year. I was quite shocked at the sight of my x rays, my femoral head is bulbous and deformed. No wonder I can't do the Lotus... ! I am hoping to be rid of some of the pain, tho I know that there's no magic bullet.

    Take care everyone[/quote:ab1c2d3a80]

    Deb, the very best of luck with your forthcoming op, please let everyone know how you get on, your experiences and your thoughts. For all of us facing the same prospect it will be very interesting. Take care.

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