Slipped Capital Femoral Epiphysis

Hello, I hope that you are still periodically checking the posts...I realize that it's been a year since you posted last.
I, too, had slipped epiphysis in both hips at age 13. Five surgeries and 7 pins to correct it. I am now 37, and will be going in for a total hip replacement in 4 days.
I have been hoping to find someone to talk to that has had this same disorder...It seems that most of the people having hip replacements are solely becouse of arthritis.
I, too, have been struggling with pain and mobility issues for years becouse of this desease. My left hip is worse than my right. The rotation in this hip is so bad that my foot splays out sideways, and this leg is quite a bit shorter due to the arthritis that has set in. Becouse of the rotation, I have been having pain in my foot, ankle, knee and lower back...In addition to the hip pain. My activity level has severely declined over the last 7 years, each year getting worse. I still make myself be active, but am in pain every day.
I am wondering how you are doing...How has this last year treated you? I am very anxious to compare notes...

Hi jason (or is it anthony?)-

wow, thanks so much for your reply. I really can't tell you how much this message board means to me. My whole life, I have never talked to anyone else with this disease. It is so nice to know that somebody else understands what i've been dealing with for all these years.

You've hit on exactly the thing that has driven me to decide on doing this surgery now...The impact that it has on the rest of my body. Personally, I could probably go a few more years with my hip. It isn't great (not exactly round, and has soft tissue damage), but it works, and the pain is mostly tolerable. Only sometimes does it flare up severely. But it's the pain that it is causing in the rest of my joints that I just can't live with anymore. Do you have the huge callous build-up on your outside toes from rotating wrong on your foot? I hate that. I've gotten to where I have to concentrate on every step when I walk, to make sure that I am rotating my joints as properly as possible. The way I see it, is my hip is already a lost cause. I might as well try to save the other joints in that leg.

I'm sorry to hear that the last few years have been hard for you. As far as the physical part goes, I also started deteriorating fast in my 30's. You are in your early 30's, correct? Seven years ago, I was running races with my kids, and riding my horses for hours on end. Two years ago, my hip got so bad I had to have a cortisone shot in it (which really worked very well). I have had constant pain, sometimes intolerable, for the last year. Anyway, I am sorry to hear that you are progressing the same as I have. It is amazing how much pain we put up with in our lives, isn't it? As far as the emotional toll, I can totally understand that as well. I was fortunate to find my soul mate at a very young age. We've been married for 17 years now. He is very supportive, and will be working from home for several weeks to help take care of me and the family while I am recovering. As hard as this disease is, I can't imagine having to go through it alone. I think it does take someone special to look through the limp, and understand when you're in pain. All that means is that you will end up with someone special! I am also a firm believer that there is someone for everyone. And when you least expect it, she will be there. You just have to have faith, and keep your eyes open.

How much had your joint/s slipped before they were pinned? That's awesome that the arthritis hasn't set in yet for you. Although, it is probably pretty frustrating for you that your hips are still in relatively good condition...Because you can't get them fixed yet. I've gone back and forth on whether it is the right time to have this surgery. Most people who get this done have arthritis so bad that they can barely walk...Can't tie their own shoes or go up stairs. But then, most people who have this surgery do have the rotation issues, either.

Yes, I also hate this disease and what it's done to my life. When I was young, my doctor told me not to worry about the future. That I might find myself in a wheelchair when i'm an old lady, but that's so far off that it's not worth worrying over. So, needless to say, I was shocked when I was told at 35 that I would be facing hip replacements in 2-4 years. I mean devastated. I cried for days. I thought this whole disease was behind me...That it was just a distant part of my past. I am just now coming to grips with the fact that this is chronic. That it will never go away. That I will be dealing with this for the rest of my life.

And I can't believe what you said about wishing that you had been taken to a doctor earlier. Being as we did not have computers when I was a kid, I have never researched anything about this disease. Until now. I just found out this week, literally, that if you catch this disease in the first few weeks, light traction will usually fix it! What!! I looked up my hospital records (i have copies of all of them), and read that I had symptoms for 9 months!! I went like 6 or 7 months before my mother took me to the family doctor. He did not have a clue, nor did he think to take an x-ray or refer me to an orthopedic. His advice was to go home and excersize!! He thought it was probably because I was overweight. Well it was partly because I was overweight, but excesize was the worse thing I could have done. But I did, for months. Until all the running made the pain unbearable and I finally saw a real doctor. Man, when I read all this I was so mad...At everybody! My mother, the doctor, the school nurse...I just felt like everybody failed me. And now I have to pay the price for poor parenting and sloppy doctors. Man.
(sorry to go off there...Still licking the wounds a bit)


yes, I am getting the ceramic hip. Sounds like it's the best way to go if I want to be active. Thanks for the words of encouragement, really. It's kind of a rock-and-hard-place thing for me right now. Of course, i'm excited to have my foot pointing forwards. And, hopefully, take the stress off of all of my other joints. Yes, I can't wait to go for a walk, and not have to think about anything besides what a beautiful day it is! On the other hand, I am older and wiser than I was for my first surgeries. I don't heal as fast, and am fully aware of what they are going to be doing to me. Lump in the throat scared!
There are limitations to the new hip that i'm not real happy about. I can never run again (i love jogging and running). That breaks my heart. But, what the heck, I can't do it comfortably now anyway. I guess those days are just over. And I can't ski. Not that I am a skier now, but my son is passionate about the sport, and I was really hoping to share the experience with him once my feet were pointing forwards. Oh, well. I can still ride my horses. That was really the big one for me. I plan on riding for many, many more years to come. I am able to ride now, but only for short periods of time, and it is uncomfortable.

Well, I think i've rambled on for long enough now. Thanks so much for the reply, it's so good to "talk" to you!

Please keep in touch!!

Good morning, jason,

well, it looks like we both have some venting to do! It's nice to let it out, huh.

I've never heard of the osteotomy before now. I will do some surfing on it. The cortisone shot only helps if you have arthritis...As it reduces the inflamation. Doctors are hesitant to do them much, as they can damage the soft tissue in the joint. But once a year or so for a few years is o.K. So, next time you have x-rays done, if the doctor can see fluid build-up (a result of the bone-on-bone irritation), then I would definately ask for it. When I had it done, my hip pain was so bad that I was literally in tears every day, for months. I just couldn't take it any more. The relief wasn't instant, it took a week or so...But it did buy me two years.

Of course, the shot did nothing for my rotation/foot pain. I just went to a foot/ankle specialist this winter...To see if there's anything that they can do for the pain. Come to find out I have arthritis starting in that foot, too. I had broken that ankle at 18, and arthritis is setting in. Well, the sideways rotation that my hip makes that foot do is just making the whole situation worse. They casted my foot for orthotics...Ever heard of them? It's just a contoured supportive insole that slips inside your shoe. I'm still in the adjustment period, gradually increasing the amount of time that I wear them each day. My foot really appreciates it! All these years, it has been compensating for my hip. Well, now it is finally allowed to move as it was intended. My foot is already feeling better, though strangely enough, I can feel more pain in my hip now. Well, anyway, I thought i'd mention the orthotics to you...It might be a way for you to relieve some leg/foot pain. It's really hard on the body to be so out of alignment. Our disease not only affects the hip, but the entire body. Anything that you can do to take the stress off of the rest of your body will help.

And one more thing I thought i'd mention...Sounds like it might be just the right thing for you. Next winter I am having my right hip "cleaned up". It has spurs and healed with a 40% slip, but doesn't have the arthritis in it, so there is not much soft tissue damage. They are going to pop my hip out of place and clean it up...Make it round again, shave off the burrs and such. They couldn't do this with my left hip becouse the arthritis and soft tissue damage is so bad. They wanted me to get the worse one done first. But hopefully, there will not be much more damage to my right one in the next year, and I can do this "overhaul". It will buy me many more years of use, and should restore alot of the rotation problems. I'm very excited about it. It is not a super common proceedure, so if your doctor doesn't know about it, I would shop around. I shopped for doctors until I found one that I liked and trusted. It seemed to me that most of them were always in a rush...They wouldn't just sit down and talk to me. I ended up at the mayo clinic. Which real nice, because the doctors all work together there. The doctor that is doing my hip replacement is not the same one that will be doing the overhaul. They all have specialties. Anyway, I will find out the scientific name for that proceedure when I am in there next week and let you know.

I just looked at the clock and realized that I am running very late...
Talk again soon...
Barbara

Hi jason,

back from my apt...Sorry I had to run earlier. The hip that I am going to have "cleaned up" looks pretty good on x-ray. Of course, there's a few spurs, and the slip caused a lump at the base of the ball that is preventing rotation. But over all, the joint is fairly round and spaced well. You know, there is one other procedure that i've heard of, called resurfacing. Have you heard of it? It's where they just resurface the ball...It's a lot less invasive than the total replacement. The doctor that I decided on wasn't personally comfortable enough with it to consider trying it...I think it's a relatively new procedure. But if you surf on the subject, you'll find lots of sites about it. Anyway, if your ball is too flat to "clean up", then maybe a resurfacing would work. Just a thought.

That's great that you are still so active. It would be easier to give into the pain and not go to the gym, or do the activities that you enjoy. But a little bit of pain is worth it! Hiking in the mountains is a something that we really enjoy as well. That is actually one of my goals...To fix my legs good enough that I can do some deep woods hiking/camping out west. Are you still biking and hiking? For me, I can't do the things I like for as long, but I still try to get out there and do what I can. I figure, i'm going to be in pain anyway, I might as well have fun!

By the way, how many pins did you have put in? I hear they're trying to stick to one now...I had 4 on the left, and 3 on the right. I've just recently read a little about avascular necrosis...Sounds terrible! I guess it could be worse, huh?

Well, I have plenty to do before I leave for the hospitol in 4 days! So I must get going...

Have a great day, jason!
Barbara

Hey jason and co.

Well, I had my left hip replaced this week. Pretty crazy. I still can't really believe that I did it! I'v been home for 3 days now. Not a whole lot of pain, not like the first few days. The coolest part-is that when I walk, my foot automaticly faces forwards! My foot hasn't pointed forwards on it's own in 2 decades. That, and he lengthened it a bit so that my legs are now the same size. There was quite a bit of deformity in the bone becouse of the scfe, both in the femur and in the pelvic. They expected this, and it just meant that surgery took a little longer than usual. I got the ceramic hip, which i'm pretty happy about. I think the hardest part now is going to be the wait. I'm on very limited mobility for 2 months. Yep, that's gonna be the hardest part...Keeping patient.

Well, just wanted to let you know that I did it.
Peace :-) barbara

Hi jason,

sorry it took so long to reply to this post...I didn't get notice that you had replied, and hadn't been browsing this site for a while.

I had general anesthesia. My os said that it is harder to control the leg length with an epidural...And being as my legs came out the same length, I believe him. I was a bit scared to have general, but I just had to trust his decision.

I had ceramic-on-ceramic. Being as this material has only been available to the general public for 3 years, they really don't know exactly how long it will last. They say I should get a good 30 years out of it, if I obey some rules....No running, jumping, contact sports, or skiing. Well, I coudn't do any of that before the surgery, so no big loss there.

As far as returning to normal activity...I am 6 weeks along now, and just drove for the first time this weekend. It takes 8-12 weeks for the hip to be encapsulated again, and a good 6 months to regain the muscles that hold it all together. So, by august, I should be doing pretty much anything that I want (within reason, of course).

Hope you are doing well, jason.
Peace :-) barbara

Hi my first post here. I too had slipped epiphysis at age 12. It took 4 months for the doctors to realise what was wrong with me despite the fact my father had the same problem in his teens. The pain started in my knee and they were only xraying my knee till my father insisted they xray the whole leg. Next thing I know I am being carted off to a ward and explained I will have an op the next day. I remember feeling so relieved as I had spent 4 months with teachers and so called friends at school saying I was putting it on . The last few times my father took me to the hospital a & e I couldnt walk and still was being told I was putting it on . Anyway, right hip was sucessfully pinned and after intensive physio therapy I was back at school 4 months later. No one apologised for saying I was putting it on. My father was so pleased I wasnt left with a limp and my life went on pretty normal from there. Was able to dance, had two kids normal. Had restricted range of motion but it wasnt too much trouble.
At age of 30ish I noticed hip getting stiffer and had had some trouble getting into and out of a car easily. Hardly any pain though, so didnt do anything about it. Carried on with life, taking my kids swimming, going aerobics, gym and as time went on noticed there were more and more things I couldnt do at the gym e.G. Rowing machine, some bikes etc.

About 4 years ago, just after my 40th birthday I noticed more and more pain in my right leg, not necessarily in the hip but in all different places, e,g, groin, knee. I went to my gp and asked if I could have an xray done and when the results came back he requested to see me and explained I had severe arthiritus in right hip and would need a replacement when im older. Hmmmmmmm. Im like I cant live like this till im 60+, so did some research online and found out I could have a replacement now and also found out about resurfacing. I decided that is what I wanted. Did more research and found a surgeon who was experienced in resurfacing/thr and asked my gp to refer me to him. 4 months later got to see this surgeon who explained my hip was too deformed for resurfacing. I was gutted. But he explained I needed a thr and my name was put on the waiting list.

Anyway, 9 months later I have my thr. Had it done 3 weeks ago and wow the difference. No pain since that op but still severe restriced range of motion but have been told that should improve in time if I keep up with my excercises. Both legs are same length now (right one was getting shorter before).

Interesting to find some people that had slipped capital femoral epiphysis. Sorry you had it and you both seem to have had it worse than me having both hips affected. Wish I had found this forum earlier. Better late than never lol.

Hi gocat,

good to hear your story, thanks for sharing. It's always nice to know that there are other's out there that have been through the same things. I am glad to hear that your new hip is treating you well. I am almost 3 months post-op, and loving it! Well, the soft tissue stuff is taking it's time healing, but I already feel so much better than I did before the surgery! No more bone-grinding pain, my leg is back to being a normal length, and my foot actually points forwards!!
I'm now having to deal with the fall-out in my knee and ankle, as they were rotating in the wrong direction for so many years, that they are now having a hard time adjusting. But, I am optimistic that this will improve as well.
There is another message board that gets quite a few more hits than this one that I have been going to. It is geared towards thr people, in every age and with every medical background. It is called the totally hip support group, I believe the url is totallyhip.Org, but i'm not positive. Google it. Well, anyway, I found this other board an invaluable source of info and support as I was recovering.
Again, thanks for the post. If you have any questions at all while you recover, don't be afraid to ask me. I'd love to help.
And hey, welcome to the "my hip doesn't hurt anymore and it actually functions properly" club!!

Peace :-) barbara

Thanks for your reply barbara. I to belong to some other forums too like msn and yahoo groups ones. They are very helpful and informative too.

Will try and find totallyhips. :d

Hello all.

Let me first give you my background before I ask my questions. In december of 98, bilateral slipped capital femoral epiphysis occured. It took a month for the doctor's to figure it out. Apparently, it had slipped multiple times(well slipped more), and I just wrote it off as growing pains. I had it operated on, in situ pinning. Both of my hips were pinned, my left was one extremely bad, an unstable slip. I am sure you heard of the description of ice cream falling off a cone, thats how it was described to me. Apparently that my left one slipped half way off. The surgery was a success. My left hip, no longer gave me pain. I was on crutches for a few months, then went to physical therapy. At physical therapy, I believe they made my right hip worse. I went to my orthopedic doctor, and he told me I had coasting(or ghosting of the pin), I cant remember which he said, and can't find my papers on it. Anyways, fast foward in my life a bit.

I am now 22 yrs old. Right now, I am working a job that requires me to stand 10 hours at a time. Throughout my life, my right hip would give me pain, but not enough to really hinder me. But I just started this job, and the pain in my hip was getting progressively worse. I had 3 days off, and I thought that would be enough for my hip to stop flaring it up. Until today, I was doing my normal thing(work at a paper factory) stacking papers on a skid. And when I went to push the skid across the rollers, to another location, I felt sharp pains in my right hip and my right knee. This is the first time that this has happened since my surgery, and it had very similar pains to my original slip(not as harsh though). I managed to finish the day out somehow, while limping a bit. This incident happened today, and has me a bit scared to tell you the truth. I currently dont have any kind of medical care.

My question to all of you is, has anyone ever had coasting/ghosting of a pin? Ever had sharp pains in the knee and/or hip?

I am pretty sure, I will have to go see a doctor about this, I just hope this isnt something serious.

Any answers/thoughts/comments would be greatly appreciated. I took the day off work tomorrow, to think some things through. Also, has anyone tried to apply for social security for this? And succeeded?

Thanks all
nik stultz

Hi, folks! Here is my story in brief. Firstly i'm a white girl, so, an unusual for this disease. Anyway, i'm looking for your advice. So, here goes my story. When I was 11 I too complained to my parents that my leg hurt me so bad. I begged them to take me to the doctor, but my mother ignored me, putting it down to growing pains. In the meantime I was limping with my head away out in front of me. I'm sure you can imagine the picture. Anyway, finally my gym teacher called my mother and told her that she had better take me to the doctor. So, my mother made an appointment with the gp. Of course, there was like a two month wait to see the doctor (typical!). So, in the meantime, I had a complete slip of the left hip. I was unable to walk and the surgery was done the next day with two pins. This was in june 1987 and then in august 1987 they pinned my right hip as it was showing signs of slipping as well. The following august, they removed all of the pins.

Over the past 6 years i've been experiencing debilitating pain in my left hip but off and on. Generally it happens for about 2-3 weeks at a time. During which time I can hardly move it, even while sitting down. I walk dragging my leg along me because the pain is immense.

A few years ago they took an x-ray to see if arthritis was causing the problem. It wasn't and the pain went away again, so, I just dropped it. But it keeps coming back and is really getting me down. I like to go to the gym. I don't know how to describe the pain. It's a pain directly in the hip and surrounding joint area. I feel like the hip is going in and out or rubbing or something. I don't know what's happening, but it's very very painful. I'm now on etoldac & co-dydramol until I get my recent x-ray results back.

Any advice from out there would be appreciated.

Thanks

Hi I can relate as a parent of a 15 yr. Old son who had a bilatteral slip and had both hips pinned when he just turned 14. I'm angry with the doctors I had taken him to his pediatric doctor and then to a ortho spec. 4 times in 7 months and was told each time there was nothing wrong with my son except the fact he craved attention. I had to search the web and find out 4 myself what could be causing my healthy active teen to walk with his leg turned outward and cause him to have such a limp and what was causing him such awful knee pain I then returned to the ortho and demanded my son's hips be xray'd! That day he was taken to the children's hospital and he had both hips pinned. He only suffered knee pain in his right knee and the stupid doctors never once checked his hips they did xray's and mri's of his knee and that was it. I am currently in a lawsuit aginst all of them if they would have checked his hips to begin with he had a greater chance of a good recovery now he cant even ride a bicycle and the hell we put him thru for those 7 months believing he was faking I feel horrible. Has any one else been misdiagnosed? I just want to say I feel for any of you who are suffering with this I see the pain everyday thru my son's eyes.

To all those interested:

I finally got my diagnosis after many x-rays and 2 MRI scans (the first one was worthless as they didn't inject the bone with dye). The first surgeon wanted to tell me that it was just arthritis because that's all the first MRI showed. I demanded further investigation (arthroscopy with intent to clean up joint if possible). As he didn't do that sort of thing (small NHS hospital and he really only deals with emergencies and hip replacements) I was referred to 'the man' in Glasgow, Scotland. Thank God! He said he'd put money on my problem being Femoral Acetabular Impingement, but would need a MRI arthrogram (dye injected into the bone) and then he'd know for sure. To cut a long story short, he has done the Open Hip FAI surgery on 18th December 2007 and I am now recovering. He said he believes there is reason to be positive as after the deformed femoral head was corrected, there was a much improved range of motion. Obviously we won't know the full outcome until much later. However, he did say that full hip replacement will definitely be on the cards, but hopefully not for a while, again something that is unknown as the long term results of this surgery are really unknown. Regarding my right hip, I feel a definite weakness there, but not the same striking, debilitating pain that I had in the left hip. It is more of a constant ache. It's hard to say if it is because I have been compensating for the left one or because it is really becoming a problem. Hope this information helps somebody.