Hi was wondering if anyone could help,I had Perthes disease when i was 6 years old(im 28 now)it was a particulary bad case due to late diagnosis however after several operations made an unbelievable recovery(surgeons words)however 3weeks ago i jerked my leg and the pain was really quite severe so went to doctors and he referred me to specialist the outcome being they think im going to need an op.where they break the bone and somehow reset it,since i jerked my leg,it seems to click a lot my hip never did this before,i was wondering how i can be ok for 15years then 1 day my leg just gives up with no warning is this usual?also if i have to have the operation what is the likelyhood of being left with a limp,amazing as it may seem i have not had a limp since i was about 14 and my legs are roughly the same length,i would be extremely grateful if you could advise

-- Marc David Taylor (mdt1888@aol.com), December 25, 2002

Answers

Below is the link for the website for Perthes Support

http://maxpages.com/lpsupportgroup

Debi Ross Web Coordinator For Aboutjoints

-- Debi Ross (dross2@jhmi.edu), March 21, 2003.

I am afraid that I don't have any answers. I was 7 (now 23) when I got leg perthes disease, had a brace for 2 years, and seamed to also have been "cured". However in the last couple of years I have had a lot of problems with it. I've looked on the internet and can't find anything about what happens to the children in adulthood. If you have any info that might shed some light onto this mysterious problem I would really appreciate it.

-- Brianna Deam (brianna2@attbi.com), January 29, 2003.

Perthes disease is a disease of children which results in the deformity of the femoral head. This deformity can make it much more likely that the patient can have early deterioration of the joint and it seems that this is what happened in your case. It is not unusual for a patient with mild to moderate arthritis to have no symptoms until he or she has a mild injury and be symptomatic from that point forward. Without looking at your x-rays, it is hard for me to determine what sort of osteotomy is being recommeded for you. Some of them do result in a leg length discrepancy. Others do not. If you do not end up with a leg length discrepancy or any muscle impairment from the osteotomy, I would expect that you will not have a limp. If you have significant arthritis in the hip joint itself, an osteotomy may not cure your symptoms of clicking and pain. However, if you only have one small area that is arthritic, it is possible for an osteotomy to realign the joint and allow a good section of cartilage to assume weightbearing responsibility in the hip and unload the disease area of cartilage and, therefore, improve your situation. I hope you find this information useful.

-- Marc W. Hungerford, M.D. (mhunger@jhmi.edu), January 29, 2003.

I am sorry but i don't have an answer but I diagnosed at the age of 8 and i am now 15, and i have been having a lot of hip pain when i walk and things. When i was diagnosed my doctor said i was the worse case they had ever seen. they put me through everthing possible and i still have a limp, but they say i don't have a leg difference. and i have also noticed that my metal in my hip is sticking out and i am worried that there might be something wrong with that, because for one thing i can feel the bone sticking out and then above it the metal is sticking out where i can feel it. I am only 15 years old i am worried that it may get worse if i don't figure out what is wrong but the doctors just don't give me an answer in what to do. if you have any advice for me from what you have experienced when you were my age dealing with the disease please let me know. Thank You.

-- Lynn Berg (berglynn16@hotmail.com), March 10, 2003.

I'm 9 years old and i still have leg perhes and i don't know what to do so if you have a responce email me! Randy

-- Randy Yehia (dodge9325@hotmail.com), March 20, 2003.

I too had leg perthes when i was 2-5 years of age. I am now 26 and i experience pain in my hip, and in my knee from overuse either from walking or going to the gym. I can not do the physical activities that i would like due to this disease and it really causes me some depression. i have not found information regarding any treatment or any answers to any of my questions that i previously had. if i do in fact get some i will contribute to all of the people who suffer.

-- Michele B (mishlb@hotmail.com), March 20, 2003.

I'm 27 and i was diagnosed with perthes in right hip at 7 years of age. I haven't had any surgery yet. I was told if the hip is cut and reset into another position , it makes it harder to have a birmingham hip resurfacing done a later time. This is my main objective, to have my hip done at the latetest possible time in my life. So that i dont have to have multiple replacements. Over a two year period i have stop working and my hip deterioration has slowed right down to the point that the doctor sees very little difference. Also if someone has had injections, i need to now if it works.

-- Theresa Segovic (nsegovic@optusnet.com.au), March 27, 2003.

My little girl is about to undergo surgery - femoral and pelvic osteotomies. Not much info in Australia. am hoping that this can aleviate some of her pain and limp. she is only 6 and 3mths. After reading your stories I am now getting scared. please email me any good news.

-- Kym Dachs (kymdachs@bigpond.com), April 08, 2003.

i also have leg perthes in my right leg it started in about 5th gread am only i7 and they alrady want to do a hip replasement i saw this thing on the news about this guy getting a hip replasement and i guess its this new thing were you dont have to keep having a new one ever 10 years you can keep it for life. i also have a limp but it dosent affect much. i had a leg prace the uglest thing you have ever seen i wore it for a good 2 years.the pain gets so bad sometimes that i wish i could have the hip replasment but i am way to scard to do that. i heard the scare is huge and relly ugle i really dont want that.

-- jessica holcomb (emokidJnJ964@aol .com), April 14, 2003.

I had Legg-Calve-Perthes diagnosed at about age 11. I was non weight bearing for about 4 years (through a combination of braces and crutches) and the joint seemed to recover pretty well. I am now 46 and have had increasing pain in that hip for the last 3 or 4 years. X-rays show the femoral ball is flattening (it looks sort or mushroom like). I have seen two orthopedic surgeons and they say I need a hip replacement. One of them said that 50% of patients who had Perthes in childhood need a hip replacement before age 50.

I'm now trying to find a way to get either a metal-on-metal THR or a resurfacing AND have it covered by my HMO. That's a real challenge.

Eric

-- Eric Miller (Eric.C.Miller@usdoj.gov), May 09, 2003.

my name is amanda. i am 23 years old i am trying to find out if perthes disease can be passed from parent to child. i had it at the age of 9 and i have never been the same since. i still have pain every once and a while in my hip. i had surgery at the age of 9. i spent two months in the hospital. and 8 weeks in a wheelchair at home befor the surgery. i need to know if it can be passed from parent to child. so i can try to prepare my self for what my children mught have to go through

-- amanda lynette walker (rick_and_amanda_in_ohio@yahoo.com), June 05, 2003.

check out leggperthessupportgroup@yahoogroups.com , it is run by people who have perthes or a child with perthes and can answer almost any question . Just send a request to be a member , and you will get postings every day , and or ask your own questions , and learn everything about perthes . there is also a discussion group every thursday evening to talk with other members , or kids can get a pen pal who has perthes . Sherry( MOM) and Jamie ( 6 years old with perthes ) P.S. They recommend alot of great Doctors who "know" perthes, such as DR.Paley in Baltimore and Dr. Lopez .And discuss the various surgeries and complications .

-- Sherry Ann Mathis (sherry@ursaeng.com), June 06, 2003.

Yes it is possible that one day your hip just gives. Unfortunetly it is usually the start of the joint worsening. I was diagnosed with Perthes at age 12. 360 days in traction, 289 days in a traction brace, and 374 days in a straight brace I was "cured". I played football, track, and powerlifted to prove I was normal. This all shortened the usefullness of the joint. My hip one day gave then clicked then night spasms from pain. I am now 46 and am having total hip replacement in a week. Take care of your leg and do not push it!

-- (cen46695@centurytel.net), June 09, 2003.

Perthes disease is not hereditary and is not passed from parent to child.

-- Errol Bennett, M.D. (ebennet6@jhmi.edu), June 16, 2003.

When I was three I collapsed one evening on the kitchen floor and couldn't get up. I was diagnosed with leg perthes. I am 50 years old now and feel very fortunate when I read these other stories. I have had no problems with my left hip since I finished my prescribed therapy. Let me describe what that was. I was confined (a tamper/childproof harness) to my bed for a full year to keep any weight off the joint. My bed was moved downstairs to the dining room so my parents could carry me anywhere and everywhere if I needed to leave the bed. When I was 4, I was then confined (tied in) to a wheelchair to keep the weight off the joint and give it time to develope or repair itself properly. (FYI, I felt pretty cool in my wheelchair. I was the only kid in the neighborhood with his own "wheels".) When it was time to go to kindergarten at 5, I was able to go with the use of crutches. But, my left leg was in a sling so that my left foot couldn't touch the ground and put weight on that joint. By the time I finished that year in school my x-rays showed that the joint appeared normal and I was able to retire my crutches. This prescription of time and patience worked beautifully for me (not so easy on my parents) since I have enjoyed perfectly normal hip health with an athletic lifestyle for the last 45 years. There was another boy in our town who was also diagnosed about the time I was. His parents decided not to confine him as much or the way that I was confined, and by high school he was showing signs of a limp. I hope that my story is a help to everyone needing some information or hope concerning leg perthes disease.

-- craig barnard (cramas@aol.com), June 17, 2003.

My son was diagnosed 2 years ago, and after much research, it is when he's older that I worry about most. A lot of times with bad cases, once the child progresses through the disease, they can go very well for a while then end up needing a hip replacement in early adulthood. If you would like you can go to stopperthes.org, I have some info posted there, and links. There are also more links from my homepage. and would like anybody with any interest at all in Perthes to visit.

-- Jenn Bove (info@stopperthes.org), July 14, 2003.

I am 43 and was diagnosed at age 8. Wore braces for 2 years and had surgery at 10 which placed a steel pin in my pelvis to secure the placment of the hip joint. I made a full recovery and was active in sports through my teens. 10 years ago I was just into the motion to jog lightly back to my front door and I felt something twist in the joint. I was in pain or discomfort for about a month or so. Xrays revealed no problems. Haven't had any problems since. Last week I fell down some stairs and among other things aggravated the hip joint. It's starting to improve but I've been in a fair amount of pain sometimes. Xrays revealed no problems again. Dr. said I'm good for 10-15 years before I'd need hip replacement surgery, that it is naturally arthritic due to the disease, and just to take a mild pain reliever. I expect that this episode of arthritis will pass in the coming weeks as it did 10 years ago. I'm now more interested than ever to relate to others about the long term effects of having had Legg Perthes, which is my reason for writing.

-- Gary LeBlanc (garyleblanc2003@hotmail.com), July 22, 2003.

I had Perthes when as 7. I am now 29 years old. I started with further complications to my hip and lower back about 4 years ago. Once I recovered from Perthes aged 7 years old, I started sailing. At university I sailed nationally on the Uni team and travelled nationally and internationally. I guess I rather over did it all and eventually the pain got too much. Although now can't sail etc... I have taken up new hobbies. I am a keen gardner, I can do small walks in the countryside, and I swim. Focusing on what I can't do gets me down. I focus on what I can do and my life now. I don't want to loose a second or an opportunty. My partner is understanding as he broke his back 4 years ago. So I consider myself very very lucky. My advice to anyone would be to live for today. There is no point worrying about how bad it can get or what the pain means or why its all happened to you. Tim and I are getting married this year. I've become an aunt for the first time and have won a local gardening competition I have a lot to look forward to and won't let it get in my way. If anyone wants to chat further, please feel free to email me.

-- Charlotte Britton (charlottebritton210@hotmail.com), July 29, 2003.

I too had perthes disease and was treated in LA, Ca. at Orthopedic Hosp. Several castings, and surgey did not do anything and my hip was quite deformed, resulting in reduced function (less than 30%). I was somewhat old (10) and treatment was somewhat delayed and most likely didn't help matters. My hip was so deformed that I could only walk for a a few minutes. I waited for technology to "catch-up" and had a total replacement in 1991 at the age of 30. The procedure isn't so bad but you must be faithful in recovery, following doctors instructins, PT etc. so that the joint can become well-established. I still have very limited movement since my body had changed around the perthes hip, for example I have a curvature of my spine. The best thing about having an artificial hip is that the pain is so much relieved! I still cannot walk or swim for too long as the joint tightens up and I limp terribly. Still, I have had the joint for over 10 years and it looks good. My problem is that I now have all these other odd problems related to my spine and I am wondering if others have had similar problems, or if anyone knows of a connection. I was recently found to have severe degenerative disc disease and a narrowing of the nerve openings in my spine, unusual at 41. Does anyone know of any relationship to inflamatory diseases? Good doctors? I live in the San Francisco bay area. Thanks in advance!

-- noelle Harrison (ncharrison61@yahoo.com), August 05, 2003.

I was diagnose at the age of 7, I am now 30. I had a severe case of perthes. By the time I was twenty (1994) my hip was giving out (muscles), my hip clicked when I walked, Sympothetic Nerve Deficiency and a gamet of other problems. I am overweight and they blame my weight, exercise and lose the weight, well when I exercise that inflames my muscles around my hip and causes severe pain and the muscles to give out. Any way I had a complete left hip replacement at the age a 20. It was difficult because of the diffence in leg length. My surgeon lengthened my left leg which cause my body to have to adjust 1/4 of an inch. I ended up with a partially collapsed lung after I started to walk again. After that cleared up I was good for a few years. I had a surgery again in 2002 to replace the ball and cup of the previous surgery and a bone graph to repair the bone degenteration from the chips of plastic from the ball. I can only tell you with the hip replacement the pain is less severe. I still have discomfort and occasional pain. My life is better since the replacement. I have been blessed with two gorgous children. I have slight limp it is really only noticable when I have been very active. Good Luck. This is a nice web page, I haven't met anyone before with leg perthes. It cool to be able to identify with other people.

-- Lorie Rooker (bugaroo99@yahoo.com), September 08, 2003.

Hello all.I too was diagnosed with severe leg perthes as a child, around 5 or 6. I am now 31 and in severe pain almost constantly. I wore braces for almost 3 years as a child until specialists I saw at Shriners hospital in Dallas tx told my parents that the braces were at best just the thing to do and a proven benefit had yet to be found by wearing them.I had only the usual problems, clicking and popping and the occasional twinge of pain up until about a year and a half ago. After a ride on a 4 wheeler I woke up the next day felling like I had pulled a groin muscle really bad. After a week or so the pain became so unbearable that it was difficult to walk. I saw an ortho doc and was told that it was my hip..this was the first time I had seen an x-ray of my hip as an adult and it was really nasty looking. I have about an inch or more leg deficit on the left side and the femoral head is really flattened out. My Dr. gave me a steriod/cortisone injection in the hip and in a few days I was better. Now a year later and a week after my 2nd hip injection I am still in pain. It hurts to move the joint at all and it hurts to bear weight on the joint, which is really bad considering that I work as a OR technician and am required to stand for very long periods of time. My problem is that my Dr. doesn't want to replace my hip because of my age. Does anyone know of the new ceramic hips that are supposed to last longer and are supposedly a good option for younger recipiants? I am at a loss but very pleased to have found this site..I wasnt aware that this disease was so common. just a side note..my Dr. informes me that research on perthes hasnt come much farther than it was in the early 70s, and that they still dont really know what causes it or if its better to wear braces or not. weird huh? anyway, If anyone has any info or input please contact me.

-- Fred Carpenter (fcarpent@twcny.rr.com), September 10, 2003.

I was diagnosed with Hip Perthes when I was about 10 and I am now 27 years old. As a child I absolutely refused to accept any of the suggestions of doctors for either crutches or that God forsaken brace. I am not suggesting what anyone else should do, but in my opinion by refraining from the temptation to undergo surgery, of not sporting that crippling brace I am today far better off that I would have been otherwise. I am grateful to my parents for not forcing me to accept these treatment also,(although they certainly did their best). Currently, I live an active lifestlye, my hips do "bother" me to an extent, clicking, popping, soreness, etc. but it is bearable. Obviously there are certain activities that enhance the negative consequences, but, I do what I can to keep my hips loose, stretched and fluid (massage is a great benefit). I would highly recomend to anyone having pain and discomfort to implement a stretching regimine into your daily activities (any bit will help-and it may actually be uncomfortable at first-but it will pay off in the end). I have no doubt that this has been what has helped minimize the side effects of this disease on me. I hope this has been of some use. If anyone would like to discuss this further, my e-mail is listed below. Take care, Randy

-- Randy (superenlightenedbeing@hotmail.com), September 16, 2003.

Hi. I had Perthes disease when I was 7 (I am now 27). My treatment involved hospitalization for 4 weeks for traction (where they hang weights off the end of your legs), then crutches for a few months afterwards (can't remember how long) to keep weight off my hip. I couldn't do any kind of physical activities for a year after the diagnosis. But after that I made a full recovery. However, when I was 18 I started to experience pain in my hip every now and then. It got gradually worse over the years and I was diagnosed with Osteoarthritis. I have tried all kinds of anti-inflammatories and pain killers, as well as physical therapy. My doctor told me to lose some weight as this would help, but I am not at all overweight (I fall in the "normal" category of weight for my height and age). I've tried working out at the gym to strengthen the muscles around the hip, avoiding any exercise that would put too much strain on the hip, but that just aggravates it and means I'm in pain ALL the time! I live in New York City now and my Orthopedist has decided that its time to give me a hip replacement - I'm having the new ceramic hip that should never need replacing. I know I'm young to be having this and struggled with the decision for a while, but I decided I'd rather be active and pain-free in my younger years than suffer continually and be on medication forever.

-- Michelle Rimmer (mvrimmer@yahoo.com), September 23, 2003.

I also have Perth's Disease. I was 6yr.old when I found out,I wore braces for 4 years and after that I thought all was fine until I started having pain again in my left hip. I had it in the right hip first then it went into the left hip. I only have the pain in the left and I am now 30 and also facing hip replacement. Nothing work's for the pain and I am too young to go through the replacement. My doctor say's that I would have to have at least two more hip replacement's by the time I get older. They still aren't sure what they want to do yet,and I just wanbt the pain to go away. It's so bad that it keep's me up all night and the pain med's that they give me does nothing. Susan Maine

-- Susan Jorai Maine (maine4g@comcast.net), October 16, 2003.

Hi folks. Perthes just seems to keep on going in some unlucky people. I was diagnosed at 6 yrs old and I'm still having trouble at 56. The sawbones wants me to be older before hip replacement - and having seen the figures on how long those last so do I. If the pain is bearable stay well away from doctors - they can't make it better and they don't know what they're dealing with. I commonly meet examples who deny Perthes is anything but a childhood disease that goes away by magic. When the pain is unbearable, you'll try anything. I know that words make no difference then - but remember that the pain will reduce in time. The only effective treatments for chronic Perthes seem to be ways of chopping bone and / or sticking in bits of metal. Last resort stuff, I'm afraid. Walk through as much as you can. Good luck.

-- Ian Sherratt (sher8@nildram.co.uk), November 06, 2003.

I am 48 years old and had perthes when I was 11 years old. At the time it was misdiagnosed and therefore not treated as perthes would normally be treated. I had 2 pins inserted into the hip area at age 11 and an osteotomy at age 15 and again 5 years later. I also had a long plate put in at age 15 which was attached to the femur with several screws through the bone. These eventually loosened and my family got lots of laughs over my "loose screws"! I had hip surgery again to remove the plate at age 22 and to put in another. At that time the leg was at least 1.5 inches shorter than the other leg so it was decided to lenghten it. The femur was cut and seperated and a body cast (chest to toe)was put on for eight months to immobilze the whole leg. We now know that immobilizing it is not good as I never gained mobility back even after 1 year of physiotherapy. The other problem that has occured as a result of this is that I grew "crooked" due to one leg being shorter and I had a pronounced limp. After lengthening the leg (I never knew bone would grow together like that) I was "straightened" and encountered lots of problems due to the speed at which I was realigned. (I am not in alignment and never will be). I had surgery to remove that plate a few years later. By the time I was 36 I could not walk around the house due to severe pain and restriction - there was no mobility left at all and the pain was causing other problems such as no sleep and I had a small baby so sleep was required! At 37 it was determined that replacement was the only option. I knew the risks of having it at a younger age and the other risks normally involved. The surgery was quick, recovery was easy - I walked as soon as I returned from recovery, did stairs the next day and got out of there. It has been 11 years and I have had remarkable success with it. My only regret is keeping weight on -it is imperative to maintain a healthy weight as the joint will last longer and there are fewer problems associated with it. I know that by not getting all the weight off that I have likely reduced the life expectancy of the hip joint but I have not had any problems with it yet. I do all of the things I did and for these 11 years I have had extremely demanding job positions as well as 2 active boys to keep up with. I spend lots of time in hockey rinks. There are restrictions as with anything else, particularly with certain exercise and carrying/lifting, etc. but this hip has been great. The replacement was 3-ply stainless (I have pots made from it and they have a 50 year warranty!!) I will likely have another replacement in the not too distant future but I do not fear it - I welcome it. The moral of this story, I guess, is that it is never as bad as you think, a limp is not the end of the world (not for mine) and there are risks to everything - if the pain is great and a replacement is your only option, go for it. I never regretted it - I also did lots of research prior to the event. I was managing a motel at the time and one of our regular guests was a salesman who sold the hips that I received. He brought one in so I could see it and gave me a video of the procedure to watch (it's a little like carpentry but not as eye appealing!). I also knew that the surgeons' reputation was excellent. I recommend doing some research and getting at least two opinions. Then at least you can make an informed decision. Good luck!!

-- Irene Carroll (icarroll@ns.sympatico.ca), November 26, 2003.

I am 25 and I didn't know I had perthes disease until I got a hip xray for a unrelated injury. The doctor said you didn't break your hip but you do have perthes disease(My femoral head is completely mushed into a ball. My right leg is 1/2 inch shorter than my left, so I have a mild limp. Throughout my childhood I lived with minor hip dislocations and mild back pain. Now that I am older I have trouble sleeping due to the crook in my spine and the discomfort in my hip. The best thing for me is to stay active. I still snowboard and hike. Although the discomfort at the end of the day can be annoying I have to keep doing these things to keep me positive. Riding in cars or sitting in chairs for durations can be truly discomforting. My doctor said I may need a replacement by the time I am forty but I plan on keeping my original till I cannot stand it any longer. Everyone I know who had a replacement has had problems. If anyone has links to a perthes specialist in Portland Oregon that would be great. I would like to go back to the doctor and get xrays to compare them to the ones I got 5 years ago. Thanks, Dan Loveland

-- Daniel Loveland (danloveland3@comcast.net), November 26, 2003.

I too had misdiagnosed perthes as a 3 year old. After frequent visits to my G.P. my mother was told she was being nuerotic, and that I was only attention seeking.After an x ray at the age of 40 for hip pain, it was then discovered that I had been a perthes child .The pain went away, and I wasnt bothered again, until I was 46, when I was told I had osteoarthritis in the hip, but my consultant thought I should get another 5 years wear out of it. Within 3 months, it had deteriated so much, and the pain was so bad, I had to have THR.I had my surgery, metal on metal, 3 months ago,at the age of 47, and it has, so far been fantastic.All the arthritic pain is gone, and I have had no post- op pain at all. I have no regrets getting it done so young. There is light at the end of the tunnel, so if THP is your only option, I would highly recommend it.

-- liz mcnicol (jmsc14286@blueyonder.co.uk), December 06, 2003.

I don't know the answer to any questions relating to perthes disease. My daughter ( who is 8) was diagnosed with the condition 3 years ago, she was misdiagnosed for a whole year. She has had 3 operation one with the metal plate and screws and her left leg is growing far to quickly and the perthes leg(right) isn't catching up. she is going back into hospital in Feb 04 for another operation and then is possibly having a pelvic osteotomy. After reading all your stories i am scared for her when she grows up i thought the tough bit was now with all the operations it seems this is just the beginning. It angers me that there is not enough research into this crippling disease.

-- kirstie (kirstieljones@aol.com), January 05, 2004.

Hi I don't know if this will help but you should all check out a site called www.totallyhip.org It's got a lot of information regarding problems with hips and more specifically hip replacements. I am 31yrs old I had perthes as a child, had the cast the brace the whole thing. Pain began again in high school but was definitely dealable. I was in volleyball, basketball and I skied. I had pain but took a lot of advil, and then prescription antinflammatories from the dr. then pain pills. Pain was moderate through my early 20's had my bad times and my good times. Daily pain was just that sort of an irritation in the background unless I did something to aggravate it and make it worse. Now I am 31 and the past 4-5yrs it has gotten much worse. I amscheduled to undergo a hip replacement on Feb 2nd 2004. And from what I understand it will be like I never had anything wrong with me. I can't wait to live a normal life and not base my decisions on whether it will hurt my hip. Just a thought if the pain is really bad it might be the way to go. But you have to reach the point where you are fed up with it. If anyone wants to they can shoot me an email. Best of luck. Samantha (starline1972@yahoo.com)

-- Samantha (starline1972@yahoo.com), January 25, 2004.

I don't have any answers but my son was just diagnosed with Perthes last week. He's 6 and has been limping for about 4 weeks now. He seems to be taking it all in his stride, is still doing sports as he doesn't have much pain at the moment. He loves playing football and is so good at it and I'm finding it heartbreaking to see him so upset when he has to sit out one match because his limp is worse. Even though he has to be x-rayed in another 3 months and our consultant says his progosis is good, from the info I've read there is alot we have yet to experience. Emma, UK

-- Emma Girard (webem@btinternet.com), February 03, 2004.

Don't have any answers for anybody. Just wanted to ask a question. My son Joel was diagnosed with Perthes Disease (in Townsville, Qld, Aust) at age 3. He still had the dreaded thing when he was 10. When he went to preschool (age 4), the specialist advised him not to participate in any outdoor activities - to keep off his legs. It was difficult for the teacher. He has always been very energetic. He suffered a lot with the pain & limping. Each time he went to the specialist, he had to do some exercises. He was on painkillers for the pain in his left hip. He never had to have any operations or go to hospital, so he was lucky in that respect. He is now 19 & says he never experiences pain in his hips. He is going through teenage problems at present & is very depressed & angry with the whole world. Personally, I think he needs something for his depression but he says he had enough of doctors when he was a child & will not even go for a check up or blood test. This upsets myself & his father greatly. He now (in his depressed state) tells me I should never have allowed so many xrays to be taken during the period of his disease. I have explained to him, I was advised by the specialist to have this done to see if the disease was still present & to check that it wasn't happening in his right hip. My son is concerned that he is suffering side effects from too much exposure to xrays. Does anyone have any side effects from their xrays taken or does anyone know what sort of side effects can develop from having so many xrays taken? Would appreciate a response. Thanks. - Denise Bourne.

-- Denise Bourne (denisemarie54@hotmail.com), February 03, 2004.

The x-rays that are taken to monitor Perthes Disease are low level and the effects are confined to the pelvis. It was important to monitor the condition, because there are circumstances when more aggressive forms of treatment are necessary to prevent disability later on. The fact that your son had Perthes Disease and today is not having a hip problem is evidence that the specialist looking after him did the right thing. It is not possible for the radiation that he received from the x-rays that were taken are a cause for his depression. There are many effective ways of treating depression and by not presenting himself for evaluation he is losing the opportunity to become much better and perhaps even cured, as he apparently has been from his Perthes. Rather than fault the treatment and attention that he received for his Perthes, he should celebrate its success and be encouraged that treatment for his depression can be equally successful. David S. Hungerford, MD

-- David S. Hungerford, M.D. (dhunger@jhmi.edu), February 04, 2004.

Again, no answer but a question to put forward. Never knew about this stuff (Perthes) until 2001 when diagnosed as a 31 year old, bit of a spin but I had discomfort for about 6 years prior. Had a THR last year and alls well in that dept, no more pain and doesn't keep me awake like it used too. What I am researching is to find out why it was onset so late in my case? could it have been associated to the Gulf War in 1991? was it accelerated by occupation (sailor)? could it be something similar to Perthes but not explored? Alot of questions but not to many answers out there, hopefully someone knows something which may bare some relevance to my case.

-- vincent rudge (vincent.rudge@defence.gov.au), February 19, 2004.

Another resource - Keith Brewster's excellent site on hip replacement options - http://www.activejoints.com and the Yahoo Group he runs Surfacehippy (http://health.groups.yahoo.com/group/surfacehippy/).

As many of us need hip replacements at younger ages than those who are suffering from osteoarthritis - some of the newer options such as metal-on-metal and ceramic-on-ceramic total hip replacements as well as resurfacing (which is done with a metal-on-metal device) are worth researching. The Activejoints site has a bunch of great links and additional information on some of those options.

Eric

-- Eric Miller (ECM56@Yahoo.com), March 01, 2004.

I was diagnosed when I was 8, spent my 9th birthday in the hospital having what was then known as experimental surgery to remove the diseased hip, and use a "staple" or "pin" to hold the leg to what was left of the hip bone. In the past nearly 30 years, my leg actually built its own hip socket and bones are strong and healthy. Surrounded by bursitis, and with the inch difference in my legs, my lower lumbar is experiencing some crushed nerves, actually have that orthopedic appointment tomorrow. But I never had soreness around my hip, limited mobility but I consider nothing to be limiting, I workout 6 days a week, 3 of those are intense kickboxing. I'm considering options right now, 1) break the right leg and lower it an inch; 2) replace the left hip with an artifical (why wait till I'm 65)if it causes release of tension on my back. A limp is nothing, it's what it will due to your spine, your neck and not to mention your organs through the years, that's a lot to think about. I'd love to find a doctor who has experience in the disease in the Orange County region of Southern California - so if anyone knows anyone...

-- Stacey (sthorn2000@aol.com), May 17, 2004.

Hi,

I was diagnosised of having Perthes at the age of 6 also (I am not 26), as part of my treatment, I had 6 months at a time confined to bed on traction, pin and plate inserted 3 times and full body cast to keep me immobile 3 times for 6 months at a time. Now, at 26 I am suffering with severe pain in the same hip(the pain gets worse after some activities, e.g. golf), I also have pain down to my knee and some in my lower back, I have also ripped my groin which also is causing an amount of discomfort. I went to a surgeon after being refered by my GP, he took 1 look at my X-Rays asked why there was a shortening of the gap, I told him I had perthes as a child, he told me that I would have to have a new hip at some stage and to put up with the pain for as long as I could, that was almost 12 months ago and I'm going back to him.

He also informed me of a study he carried out into the disease, he discovered that almost every patient in teh past no matter what treatment they had, had to get a replacment hip in later life.

-- Eanna Murphy (eanna@o2.ie), June 11, 2004.

Sorry again, No miricles here- Just a pile of questions. "hurt to walk" for about a year before, "finally takin' the kid to the doctor". Diagnosed with Perthes at 11 told me how rare at that age- Mounth of traction,6.5 mounths wheelchair, hip to ankle casts then about another year in the infamous Brace,afterwards I was somewhat forced to take up non-weight bearing sports ie: swimming,cycling etc. and as soon as I got the go a head to play weight bearing it was back to hockey, skateboarding, BMX racing, basketball at first all came slow, but slowly worked my hardest to acieve-n-excell. In now 27 and live a very active lifestyle in Whistler, BC tryng to do everything I always wanted to do as a kid, but as the years go by I'm also discouvering more and more pain and stiffness. Even to the point of having a hard time sleeping, working. Over the years I have become very fond of Advil, but it doesn't seem to work anymore. And the pain is becoming almost unbearable, expecially when the weather is glum and/or rainy. Here's my perdicament, i'm a bit overweight (come from a healthy stock) about 180-190 (after a good weekend) And still compete in snowboarding and race Downhill Mtn bikes- I would really like to keep up these hobbies but these days my hip has been so tender and sore that I can't walk through the grocery store with- out moaning and periodically streching my hips, and the limp gets quite severe. ANYBODY HAVE ANY INSIGHT ? DO I NEED TO GET SURGERY ? WILL PAIN BE ELIMINATED ? CAN I STILL DO THE THINGS I LOVE ? AND IF I GET THR, HOW LONG BEFORE I CAN "PLAY" AGAIN ? Thank you very much for your time and any suggestion, awnsers you may be able to provide. Sincerely Miles Jones Whistler, BC Canada

-- Miles Jones (cronyak@hotmail.com), June 18, 2004.

I dont have any real answers to others questions, I just wanted to give those of you out there some hope. I had perthes when I was 8 years old and had reconstructive hip surgery. I was out of school for about 6 weeks but have since made a full recovery. I am now 22 years old and can still play the same sports that I did as a child. I played varsity soccer and wrestling in highschool and never had any troubles. If anyone out there needs a good orthopedic surgeon, doctor Scott Curtis with Chicago Childrens Memorial Hospital was my doctor and he did a phenomenal job. To those of you that have just been diagnosed, keep your head up.

-- Joseph Paul Serbinski (serbinsk@uiuc.edu), June 23, 2004.

Not an answer as such. I was wondering if anybody could e-mail with information. This disease was diagnosed in my 3yr old son last year when he collapsed. He is 4 now and was told to rest for four days due to discomfort. He is a very active child normally and its hard to try and get him to calm down and rest. He doesnt undersdtand yet why he is sore.Is this the beginning of bad things to come or not, from what i have read im getting worried

-- sami jackson (SAMZ74@aol.com), June 24, 2004.

Hi...again I am unfortunately not able to offer answers as I am looking for answers myself. I too had Legg Perthes not once but twice as a child. The first time it was bi-lateral at age 3yrs ..the second time was just my left hip at age 7..which caused flattening at the top of the ball. I am now 26yrs old and having a very acute bit of pain. I have lived a very normal, active life until this point. This just hit me from out of no where. The pain is so intense I'm not able to bear any weight on it. I have been off from work and life for the past two months undergoing investigation of pissible causes. After reading this site I am more convenced than ever that this is deffinately from the past. My Orthopedic surgeon is of the common opinion that I am much too young to have THR and is wanting to try Cortisone injection in the Hip Joint to reduce the current inflammation. Has anyone had these injections..and has it truely made a difference? Very hard to find info anywhere! He is telling me that it could last weeks..but it could also buy me years without having the THR. Thanks from a very frustrated young adult that needs to get on with life!

-- Tricia Hachey (thachey111@hotmail.com), September 11, 2004.

Hi all, I am 25 years old and was diagnosed with Perthes disease aged 8. I underwent 3 femoral osteotomies, a further 2 hip 'reshaping' operations and lots of restricted movement / bedrest etc. It seemed to be better when I was about 13, but at the age of 16 I showed the onset of secondary osteoarthritis. By the time I went to University I was back on crutches full-time with a lot of pain. At the age of 19 I had a total hip replacement (THR). Best thing EVER!!! I am now pregnant with my first child, and I work as a marine biologist (on boats, diving etc.). My hip is a ceramic-plastic composite and revolutionized my life and I would say don't worry about THR and multiple replacements- the freedom to enjoy life pain-free (mainly) and do many more activities (except impact sports like running) completely outweighs any minor risks of having another THR. And for all you kids with Perthes now- do believe it can get better and there are options out there which allow you to live life to the full.

-- Annika Mitchell (annikamitchell@lycos.co.uk), October 26, 2004.

Hi i was diognosed with perthes disease when i was about 7/8 yrs old. Caused and still does at the age of 19 yrs old pain. Had lots of phisio on it , have not had an operation on it yet hoping to , how do you get to have an operation ? been wanting one for ages. Perthes disease has ledt me with a limp and one leg longer then the other . Any suggestions how to help ? .

-- natalie presston (nata990@aol.com), March 07, 2005.

if you do have do go in for an operation you won't be left with a limp you may have one leg shorter then the other but only by a few cms

-- Marie-Louise Davies (mush-56@hotmail.com), March 15, 2005.

Hi, I was never diagnosed with having Perthes disease when I was younger, i always seemed to walk a little funny as if I had a stone in my shoe but never had any pain so it was never spotted, at the age of 29(i'm now 32) I played lots of sport, football(soccer), went to the gym a lot,I started to get severe pain through my groin and the outside of my Right Knee and pain and it was taking longer and longer to subside so I decided to make an appointment with my GP who thought it was because I had one leg longer than the other, he then referred me onto a specialist and after x-rays he advised that I had arthritis in my hip, I was given cortison injections which helped for a couple of weeks, anti flammotory medication which was no use at all, he then decided to put me on the waiting list for a 'resurfacing' operation which is called a BHR Birmingham Hip Replacement which is basically a new hip ball joint which is for younger patients, It is a relatively new operation and they dont even know how long it lasts, but It has given me a new lease of life, no pain whatsover, I've to get my other leg done as well and I cant wait as it is like having two new legs with no limp and best of all no PAIN.

-- Alan Birrell (Abirrell@havelockeuropa.com), March 15, 2005.