Perthes' Disease some people never grow out of it

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hi there i have had perthes disease since i was 6 i was on the bed rest i am now 24 years old and i still have it.

i also have arthritics too in my hip and i also need a hip replacement now all because of perthes it has made my live very hard

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  • Posted

    im 22 and i too have the above problem and have too been told that a hip replacement is needed but ive been told im too young to have one at the moment so i basically have to deal with it sad ,

    I have been looking on the internet and found some info about Hip Resurfacing maybe you could look it up on wikipedia or some other site and have a look it does make for an interesting read and i am going to mention it to my doctor in the next few days maybe you could do too?

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  • Posted

    Hi to both of you. I am afraid I cannot offer you any answers as I am not the one affected by Perthes directly myself, instead I have my 8 year old son who has just been diagnosed.

    Can either of you offer me any guidance on what worked for you when you were younger ? My son has cut down drastically on activities that would cause impact - eg football / PE etc and he is left with little else. He keeps saying his leg gets stuck - he cannot straighten it and when I move it to get him dressed etc he cries out in pain. Did either of you experience this and any suggestions on what to do for the best.

    I am very sad to hear that things are not good for either of you, I was hoping a few years and Jack would be good again - that is what keeps you going I think. Any words of wisdom would be most appreciated - dont suppose either of you are in devon are you ?

    Take Care, thanks in anitcipation. :?

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    • Posted

      I was diagnosed with Perthes when I was 8 yrs old also "strange how many here were also 8" Im now 45 and its just really starting to play up again and Im lookin gto have a hip replacement! 

      When i was first diagnosed I was booked in for surgery to have a pin plate etc put in after the summer BUT during that summer holiday we went on holidays and done a lot of swimming in the beach! After returning from holidays and seeing Specialist, he was amazed the surgery was no longer required n after swimming most of my life living on the Gold Coast Aus 5 minutes from the beach SWIMMING has been a blessing for me smile So from my experience I would recommend lots of swimming. Im a little anxious about having a hip replacement but also work in Aged Care and so many elderly residence have told me it was the best thing they ever done smile 

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  • Posted

    [quote:eea294dc26]He keeps saying his leg gets stuck - he cannot straighten it and when I move it to get him dressed etc he cries out in pain. Did either of you experience this and any suggestions on what to do for the best. [/quote:eea294dc26]

    Yes that happens to me quite often. It's born out of a lack of movement, although his activities are restricted it is key that your son keeps the joint moving.

    If he's sitting for long periods it's essential he keeps moving.

    It can't be helped in the morning when he'll have been lying in one place for a while. I've found that while lying down, bringing the knee toward the chest then moving the knee in a circular motion - that usually frees it up.

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  • Posted

    [quote:ed3b521f96=\"Richard Mason\"][quote:ed3b521f96]He keeps saying his leg gets stuck - he cannot straighten it and when I move it to get him dressed etc he cries out in pain. Did either of you experience this and any suggestions on what to do for the best. [/quote:ed3b521f96]

    Yes that happens to me quite often. It's born out of a lack of movement, although his activities are restricted it is key that your son keeps the joint moving.

    If he's sitting for long periods it's essential he keeps moving.

    [b:ed3b521f96]It can't be helped in the morning when he'll have been lying in one place for a while. I've found that while lying down, bringing the knee toward the chest then moving the knee in a circular motion - that usually frees it up[/b:ed3b521f96].[/quote:ed3b521f96]

    i agree on this and the bit in bold works for me to, as for activities i never cut down on mine as i wasnt diagnosed till i was 15 so i had suffered with the pain n learnt how to deal with it, i also have a diffrence inb leg length so when i buy shoes/trainers the hospital will add a extra bit of sole to them to make me level they are great very discrete and noone can see it and it realy helps with my walking

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  • Posted

    hi

    ihad perths as a child and had to have pins in my hip and have been fine all my adult life i am now 38 and been pain free up untill 6 weeks ago when i started getting really bad pain and loss of movement in my hip joint ,my doctor put me on a course of physio at my local hospital and i was given a simple exercise routine to ease the pain and bring back the movement in my hip, the results have been great after only 4 weeks my advice is to get your doctor to get you physio at your local hospital and DONT TAKE NO FOR AN ANSWER i read a lot of mail on this site and it bugs me that some doctors work on children and adults and when the work is finnished they dont provide after care, i was lucky to have a great surgen and great aftercare

    good luck and take care

    frank

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  • Posted

    Hi,

    my daughter, who is 6, gets 'leg locks' as she calls them. In the beginning, when it all started and I didn't know what was happening. I would gently move her bend leg forward and back, and this helped. Now when her leg locks she just does it herself, she wiats a little bit then gradual starts bending her knee and moving her leg up and down. Soemone else suggested whilst she was sitting to just bounce the leg a little now and again.

    hth

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  • Posted

    Hi All

    I am a young woman of 32 and I have Bi-lateral Perthes i.e I have it in both hips. The operations I have had are a left hip rotaional ostepathy when I was 3.5 and a left hip shelf osteopathy when I was 28. I have good days and bad days and at the moment I am try to get registered disabled with the support of my doctor because I am having to pay for Physio and the Chiropractor myself. They will only support me for a couple of sessions a year!

    The best thing you can do to keep moving is alot of swimming. My parents signed me up with the local swimming club and from that I have managed to swim for my country in the P & O games in 1988. Admittitly I used to swim 3 - 6 times a week but I think beacuse of it I didn't miss out on much. It allowed me to go sailing and waterskiing on a regular basis and join in and be normal.

    I still rode a bike but most of the impact sports stopped.

    The leg locks as one of your daughters discribed are painfull but putting your child in a warm bath is great for easing the pain and if you make it fun time - then as children we forget the pain we are in and start laughing. My father made me laugh so much through the pain I believe it helped. Something to do with endorphines.

    I have now been recently offered a hip replacement but only if I have children now. So as you can imagine I have said no to both - its my decision as to when that is going to happen!

    But for those men out there - if you need it and life is unbearable then I say go for it. But do your home work find out about your doctors, ask about what the preecdure is they want to perform and look it up. Some hips last longer than others, some hips have a better advantage. Also ask people who their doctors are for Perthes and see if you could get second oppinions from those nearest to your address.

    My doctors were Mr.Pool of Stoke Manderville Hospital (he's has now retired) and I am now under the surgoen MR Peter Mclardy-Smith of Nuffield Hospital.

    As for us ladies - please be careful about which hip they would give if you need it. Some of the metal ones give of ions into the blood stream and if you fall pregnant it can effect the unborn baby. Ask all the questions you can think of - even go to the extreme of writing them down before going to see the doctors, because if you are like me I forget what I want to ask!!

    I hope I have given some help and encouragement to those out there!!

    I am still in full time work - even though on the bad days I run around on crutches. My collegues help me out and now they are used to it.

    Don't give up and keep smiling I find it eases the pain!! (just little)

    Take care

    Hazel x x x

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  • Posted

    Hi all

    I have two boys age 15 and 7 with Perthes disease. The eldest has had several operations for his left hip and still walks with a slight limp now but has improved tremendously over the years since he was six. The youngest child has just been told he has the disease in both his hips and we are going into hospital on Monday next week. We are very distraught at the moment as we could see light at the end of the tunnel and then this bombshell hit us. We are still being told also that it is not hereditory it makes me think. Its not the effects it has on them being physically because they can both deal with that it is the mental side of things when they cant do things that they used to do like football and P E.

    Just thought i would share this with you all

    desperate Mum from the West Midlands :cry:

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  • Posted

    Man, I see a whole bunch of horrible experiences, and make no mistake, they are. I was diagnosed in 1966, and ended up after a year on crutches having surgery with 3 pins and a body cast for 3 months. I am 57, and though I now have a very stiff hip, and a bad knee, I guess I did pretty well. I have found that surgery, although very scary, is a viable option when time off the hip seems to have very little effect. The doctor said I would experience arthritis by 40. I I have had it since 45 or so. Surgery is a tough decision but it is no where near as painful as it was 34 years ago. Unfortunately, none of us or those who have had this disease will never be whole, but hopefully advances will be made.
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  • Posted

    I was diagnosed at 3 years old and had surgery at 10 and have been fine until now I am 23 and can not put socks on half the time or ride my motorcycle anymore I would love get some answers as to why now after 13 years am I having problems again
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