Diagnosed With Perthes Disease At 18 - No Treatment For Next 10-15 Years
Oct 21, 2008
My doctors tell me I developed the problem when I was about 8 but was never diagnosed because I didn't complain of any pain. They said my case is very rare.
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As I am now fully grown I can no longer be treated for the disease other than by hip replacement, although they said I will have to wait 10 - 15 years until the pain becomes unbearable as I am too young for the surgery at the moment. Until then, I basically have to put up with it an have simply been told to not wear high heels and to not put on any weight!
My left hip is left flattened and shortened and my leg in almost an inch shorter than my right. It constantly feels uncomfortable and sometimes extremely painful, especially when walking long distances, laying on my left side, sitting for too long (eg. during long car journeys) and I end up feeling very frustrated!
I have tried physiotherapy, pain killers, a digital pain reliever and swimming to help the pain - all with very little helpful effect.
My son who is two years old he, after the X-ray and MRI examination it was found that he is suffering from perthes disease .
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I would like to ask for the suitable and correct treatment for this rare medical case which usually occur in four years old.
Diagnosed LCPD when i am 11 yrs old now i am 36. now i am having pains, is there any treatment for this ....
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I was diagnosed very early around 5, so I just had to wear a brace with yearly trips to the Shriners hospital for ortho checkups, the only issue is my right leg is slightly shorter and have had to wear a lift in my shoe. My question is, has anyone had lower back issues possibly due to the Lcpd? I've had lower back issues for several years, I'm 36 is it possibly just older age.
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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.
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i also have arthritis too in my hip and i also need a hip replacement now all because of perthes it has made my live very hard.
I am 39 years old and was diagnosed with Perthes when I was 5. My treatment started with going into hospital and having casts put on my legs so that I could have a set of splints made which kept my legs apart with a bar in the middle, I wore these for 22 hours of the day for about 18 months, I think (it was a long time ago). Little bit awkward for walking but great if you pivot around on your good leg and get your older brother in the shins with the bar! The splints didn't work so they tried traction and that didn't work so I ended up having five ops from about the age of 7 through to the last one at 19. I must admit that I do get a lot of pain with it (by the indication given in the information on this site, I think my case was quite bad)and movement restriction, but I have worked my lifestyle around it and there are things you can do if you don't want to go for more treatment. I have decided that I'm not, so I do yoga which keeps my joints supple and helps me sleep, hot baths with lavender essential oil is very good also, keep your legs warm and don't let your feet get cold because I find that also causes more pain. I've had me fill of hospitals and ops, so I'm going to do my thing and let my hip(s) get on with theirs. My regards and best wishes to my fellow sufferers. Don't let other folk tell you what they think you should do (when they haven't got perthes) deal with it anyway you want to, after all it is your pain.
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My Son is now 21 yrs of age and has been battling with perthes since the age of 5yrs. He has bilateral perthes. the left leg was the first and this was treated with non weight bearing, callipers and restricted activity and is now near normal, at the age of 8 it appeared in his right hip which he had a surgery ( varus osteotomy) with further surgery to remove plate and pins. He still struggled with pain and had hinged abduction and leg discrepancy. He was then given a valgus osteotomy as a salvage operation and further surgery to remove plate and pins at the age of 14. He struggled on through school still in pain. He has now grown to 6 ft and this has produced more problems as his thigh muscles do not work probably due to the position of the femur that the valgus placed it in. The ball of the femur is mushroom shaped and the main pain is directed through the knee which gives way unpredictably causing him to fall. He has been told by a specialist that he is too young for a hip replacement and to grin and bear with pain management for as long as he can. He has been able to do office work part time, but even this is painful do to the sitting position.His left leg does give him trouble from time to time. Nobody actually follows perthes up into adulthood as once you reach 18yrs you are discharged from the children's hospital and left to the care of your GP. There should be a call back system for check ups even if it was to help doctors to understand the disease. I don't know if surgery benefitted my son or if treatment with callipers was better, all I know was I could not bear to put him back in them for another 3 years and did what I thought was right at the time. Has anybody around this age experiencing similar problems ?
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My son was treated with a distractor on his hip 4 years ago now and it worked great .... unfortunately now he is starting back up with pain, in his hip - is this normal.....
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My hip area is aching at it looks like my right leg is smaller than the other
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I am ten years post a Perthes-related total hip replacement! It really has been a godsend for me.
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Briefly- I had Perthes diagnosed aged 8, but they caught it late so hip ball was pretty badly misshapen- cue osteotomy, hip spica etc- followed by 2 more osteotomies before the age of 13. By 15 I'd developed secondary osteoarthritis and the joint deteriorated rapidly (v v painful) and pretty much as soon as I stopped growing my consultant opted for a full hip replacement (I was 19). I had a custom made joint designed after a number of scans, partly due to thickening of the femur from my previous ops, and it is a ceramic plastic composite (ceramic ball onto plastic cup I think).
The initial 3 months post op were fairly hard going, you are not able to move beyond 90 degrees abduction so can only sit of high seats- and need a special raised loo seat! I was in a student house at the time so it was a bit embarrassing but I was kitted out by the Red Cross who lent me all the stuff needed for those 3 months- my housemates got so used to the special loo they said they missed it once it was gone! :oops: But after lots of physio I can honestly say that it made the world of difference...within days of the op my pain levels were far below what they'd been, I was off crutches within 6 weeks, and cycling a bike again at 3 months (after not being able to cycle since 13!!)- and 6 months later I spent 3 months SCUBA diving in Malaysia!
At first I had yearly check-ups (x-rays), then every 2 years, until 2 years ago when I was discharged (at least temporarily) from my consultants care! The hip is still not showing any sign of wear- and I am active- walk a lot, have had 2 children with the new hip etc.- so although the initial prospect had been of it lasting only 10-15 years we're now hoping for 20. Anyway crossing each bridge as we come to it. The pain in my hip is 99% gone, but I do suffer a touch with my back and my "good" leg's knee- but both have had to bear the brunt of a lot as I grew up so it's inevitable really... And I see a good (private admittedly) physio fairly regularly to keep on to of things, and try to swim whenever possible...(but not breast-stroke- that's a big no-no for those with hip replacements!). I do still have a leg length discrepancy (2cm) which is partly what causes my back/knee issues.
A Johnny Jump-Up is a swing /jumper that hangs from a door way that allows babies to jump.
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If you were diagnosed with Perthes Disease or are a parent, did you or your baby use a Johnny Jump-Up?
I was diagnosed with perthes disease when i was 9 years old in 1957 after 10 months of going to gp i was in agony for all that time until he decided to send me for an xray i then had to wait to see specialist who then said i would have to go into hospital after a few weeks i had to go and be measured for a frame when i was admitted they put me on this frame which was made in the shape of your body they put a long strip of plaster with tape to tie your feet to the frame was made of steel & leather then they bandaged both legs up one on either side of bed then they put these metal strips over top part of body then they put a leather strap on my left hip so as not move it was agony for first week & that's how i stayed for the next year
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After recent x-rays for chronic hip pain, (as well as frequent knee and lower back pain),, my GP diagnosed me today with Perthes' Disease. Several years ago, after a fall in a martial arts class that hurt my back. My chiropractor had x-rays performed, which showed that I had, indeed, bent my tail bone at a right angle... as well as revealing my malformed hip joint for the first time.
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I am a 50 y.o. female. For a variety of reasons, my GP is opting for the physiotherapy route for treatment/management, rather than hip replacement surgery. My femoral head is flattened (the X-ray Technician even exclaimed, "Oh! I've never seen one shaped like THAT before!", and even showed me the x-ray film.
I have been doing some further research about the disease, which mentioned a link with hypothyroidism, delayed bone growth - I was diagnosed with hypothyroidism when I was about 11/12 y.o., at which time the specialist told my mum that I had the bone structure of a 9 y.o.
I used to be quite active, and used to run, practised martial arts, bicycling... Since the pain worsened and is now pretty much a daily thing, I have eliminated those activities. I do walk fairly frequently now; but, I often wind up in pain that keeps me awake at night. Now, I am curious to know how successful and helpful physiotherapy is likely to be at my age, and what I can, reasonably expect. At what stage, will hip replacement be the "best" option?
I had Perthes disease diagnosed aged 8, it was pretty bad and to cut a long story short I had a total hip replacement aged 19 (ten years ago!).
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Since then things on the hip front have been good
I fell pregnant with my first child when I was 25, and sadly my pregnancy was badly affected by pre-eclampsia, resulting in my son being born at 30 weeks (he's fine now).
I've been doing some research about both Perthes and Pre-eclampsia, separately, and come across some articles that suggest both could be caused by blood clotting probs (thrombophilia/factor V Leiden etc.).
I just wondered if any ladies who suffered with Perthes as a child had any incidence of preeclampsia during pregnancy or pregnancy-induced-hypertension?
My son who is nearly 8yrs old has recently been diagnosed with perthes.
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After a few hospital visits for pain firstly in his knee and then in his hip, being in terrible pain and being unable to walk or put an weight on his leg. we being told he has perthes.
We were advised to return to the hospital in 1 month ( next week) for his hip to be re x-rayed (his previous x ray was normal) and to look up the disease on the internet. Hence how I found this site and others.
My son is not currently in any pain unless he does too much where he then says it aches. his leg is very stiff and has no movement and his foot is turned in.
My immediate fear is will pain (which was horrific to witness!) return or is it possible that the pain is over?
Also has anyone been able to obtain an information booklet on the disease that is appropriate for his age?
My 8 year old son was diagnosed with Perthes last July and we were advised by his doctor to minimise weight bearing so we did the usual things - crutches, Wheelchair and such!
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The perthes was caught at the very first stage and the diagnosis at his last visit was good and that my son should only use one crutch now!
However he is in alot more pain during the day and at night he wakes up in pain.
I have been refereed to Stanmore now but my question is is the pain due to the weight bearing and should all his pain be in his knee as his knee is swollen still from first diagnosis.
Is the knee swelling normal!
And do perthes sufferers usually have problems with wetting?
I was diagnosed at age 9 and had surgeries at ages 9,11, and 15. I quit running because i would get to about a mile and it would catch with pain. I love running though and am trying to lose weight so i am curious if running would worsen my condition?
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How likely is it to get pregnant after being diagnosed and treated for PID (pelvic inflammatory disease)? Keep in mind I've only had one child in over19 years with no other pregnancies!
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I'm 25 and over the past 6 years I've been diagnosed with 4 pretty serious autoimmune conditions. When I was 19, I was diagnosed with Rheumatoid Arthritis which is often crippling, even now. I was told this was an autoimmune condition. Shortly after, I was diagnosed with Coeliac Disease, another autoimmune condition. The Arthritis and symptoms of the coeliac disease when I hadn't controlled it obviously made me feel unwell and I often felt lethargic and unhopeful due to a lot of pain and stuff going on in my body.
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I managed to go on a clinical trial which allowed me to have a new and powerful arthritis drug which dramatically improved the condition and I managed to cut gluten out of my diet. I also lost a bit of weight - this helped.
However, after the trial, my symptoms of arthritis gradually came back but was usually kept under control with the exception of a few flare ups.
When I was 23, I was diagnosed with Type 1 diabetes after getting a very quick onset flurry of symptoms (another autoimmune condition) - I find this very difficult to manage.
I've recently moved cities and transferring all of my specialists and treatments left me with no arthritis medication, and a long wait until I see a diabetes specialist to adjust insulin levels. As you can probably imagine, I've been in an awful lot of pain and been feeling very down, tired and lethargic. I'm very upbeat although having so many conditions and I don't let it bring me down, even though I work a full-time job 8 til 5 everyday. I've been having problems with blood tests, platelet counts, that kind of thing.
I was aware that I had the antibodies for Hypothyroidism as I had the test for that about a year ago and I knew it was just a matter of time before I developed it. Upon my most recent blood tests, my TSH level was 47.7 - ten times the top end of the normal limit. I've literally just started levothyroxine but, as you can imagine, I feel completely overloaded with health issues and like my head is going to explode and quite down about it all.
I'm sorry to give you my life story but I was just wondering if any one else has any of the other conditions I have and how they manage with all of them?
Also - how should I have been feeling with a TSH of 47.7? Should I have been feeling VERY different because, like I said, I always feel fairly tired and down due to the combination of illnesses. Any advice at all would be appreciated - I feel massively alone with this.
I've recently been diagnosed with Fibro although I have suffered many years now that I have a diagnoses I suddenly feel completely overwhelmed with everything. I have 5 children and my husband is supportive where he can be. I'm really struggling with things I can no longer manage as I have always been so independent the thought of having a carer coming in to do my jobs really upsets me. Does anyone else feel this way??
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Today is Tuesday; I removed a deer tick from my thigh on Sunday. Should I ask my doctor to begin antibiotic treatment now and not wait for symptoms to appear (or not)?
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