to: tallcutewitmobility -yes, I know what you are going through and I know what your concerns are. This condition has been no fun at all. As explained in my earlier posts, I had both of my hips pinned at age 13. The left hip was a mild slip; the right hip was a more severe slip. For about 3 years after I had my hips pinned, I felt great; both hips felt great! However, starting around my junior year of high school(about 16-17 years old) my right leg started giving me trouble: mostly muscle type aches in my knee and shins. And, this has been going on ever since then; I am 31 years old now.

The thing that bothers me the most is my lack of mobility in my hips. I just can't move the way I would like to, and when you are a young man like me, that causes alot of problems(physically and mentally). As I type this message, my right leg is really bothering me; it's stiff and sore and aching. I have been very depressed because of my hip problems, and I am still contemplating having something done about it. There's so many things I want to do in life: dating, marriage, recreation, sports, e.T.C, and it's very hard to do with a set of bad hips......I'm sorry to hear that you have had this problem with your hips. Hopefully, you will not have as many problems as I have had with your hips. When I was 15 years old like you, I felt great! Let me know how things are going with you, and if you ever need to talk, just message me......

Jason

Hi halely,

wow, does your story sound an aweful lot like mine! My name is barbara. I am now 37, but had scfe when I was 13, in both hips. I, too, was tall and overweight. And i, too, became very active after getting my hips fixed, and lost all the weight. It is actually not a bad thing for you to have concerns about the future of your hips. I was told to not worry about it, and that I might find myself in a wheelchair when I was an old lady, but to go out and live my life with no concerns. In one respect, that was great advice, but on the other hand, it set me up for an emotional hardship. I was shocked when the doctor told me at age 35 that I would need hip replacement surgery...In 2 to 6 years. Well, I am going in to get my left hip replaced in 4 days. The rotation in my left hip has been wrong for so long, that I now have pain in my foot, ankle, knee, and back. I'm just all out of alignment. While i'm not looking forward to the surgery, i'm looking forward to feeling better. I remember what it was like when I got my hips fixed when I was young...How I felt like a whole new person. Well, I am looking forward to that relief again. So, yes, you will probably have problems later in life. I think we all do. But for you, that is a long ways off. Don't worry about it right now. Enjoy the fact that you feel good again! And while our desease is for life, it is always maintainable. They will always be able to make you feel better when you need it.
Please feel free to ask me anything, i'd love to help.

I must throw out there, that we didn't have computers when I was 13. (yes, i'm from the stone ages!!) so, it is so nice to be able to find other people out there that have gone through the same things as you. It's nice to know that you're not alone. :-)

I too had slipped ephysis in both hips at the age of 12. I was very active and started complaining about left knee pain, because I am a female it took almost 3 months before the doctors decided to pin both hips. A year later I had both set of pins removed. Over the years I continued to have some discomfort and lack of mobility. I had 3 child children in my 20's with little difficulty. At the age of 35 I started having severe pain in my right hip and knee. I underwent a right trochanteric advancement at the age of 37. It was the worst surgery I ever had. Recovery took about 3 months, and a year later I had the pins removed. About a year later I had the bursa removed from the right hip and the bone reshaped. This was to help with the pain that I was still having in the right hip. Since the time of the advancement my pain and mobility in my right hip continues to worsen. In april I stopped working due to the fact I could not sit, stand, walk or squat for any period of time. There is not a day that goes by that I wish that I had just left my right hip alone. I have a doctors appointment today to discuss my options. I know that I cannot have any quality of life with the shape that my hips are in at this time. Please make sure that you weigh all the options before making any decisions regarding your hips. I have found which each procedure my problems seem to get worse.

Hi jason I read your message and im a 17 years old and when I was 13 I had the same condition as you and I had pins in my hips but a few months later I was told that it was no good and that I would need a hip replacement. I had my hip replacement just over a month ago at the age of 17 and it has been amazing there is no more pain and I am having physio to learn how to walk properly. So if you do have to have a hip replacement dont worry (i no its hard not to) but it is amazing how good they are.

Your 21 and they say you are too young for a thr I have had one and I am 17 and they are really good (get a 2nd opinion)

hey jake,

wow! Thanks for sharing your story. That is unbelievable that you received a hip replacement at the age of 17. But that is great that you are doing so well afterwards. I bet it feels great to have a good hip again. Are you very active? Do you plan on being active? Do you know what type of hip replacement you received - ceramic or titanium or plastic? I wish you the best of luck and I look forward to hearing from you soon....Your story is an inspiration to me......

P.S: what happened to your hip that required it to be replaced? Did the circulation to the bone die out? I know that avascular necrosis is a complication of slipped epiphysis, and thankfully I never developed that.

Hi jason thanks for your message of support. Yes I do plan on being active aftr so long on crutches it will feel strange ( but I want to play cricket) I want to become a chef eventually but it will take time they say so we shall see. After my first op I did denelop a.N which as a big problem and the bone turned to soft stuff. How is your leg, hope you are ok

Yes it was metal on metal and it was a thr

hey jake,

nice hearing from you. Good luck on becoming a chef and i'm sure you will be able to be as active as you want; you will just have to pay attention to how your hip is feeling. How is the physiotherapy going?

Well, my leg has been hurting alot lately. The funny thing is, most of the pain that I have is not in the hip, it's everywhere else! I get alot of pain in my shins, in my ankles, in my feet and in my knee; not alot of pain in the hip, but I know that all of this pain is because of the hip. It's a big pain in the butt! It really puts a cramp on a persons lifestyle. But i'm glad to hear you are doing so great. You will be up and running and chasing after all the girls in no time....Hehe...

Oh yeah: are your legs the same length now? How long were you on crutches before you had your hip replaced?

Jason

Hi jason sorry to hear about your leg hurting, my knee used to give me alot of jip and I was told by my surgen (cant spell lol) that the pain from the hip is felt in the lower leg so becareful. I was on crutches since I was 13 so its about 3 years, will be strange without them. Before the op my legs had a 2inche difference and now its about halve a millimeter so he has done a gud job. I just have to wear a little insole but I am glad it is all over. Did you say you need to have a hip replacement?

Jak

hey jak,

wow, sounds like your surgeon did a good job with your hip. It must feel really nice now that your legs are about the same length. My legs are about 1/2" difference in length, so it's not that big of a problem.

My surgeon hasn't suggested a hip replacement yet, but some days I feel like the time to have one is now! My hips are not totally destroyed or bad yet; I still have alot of cartilage left and the joint space is pretty good still. However, the deformity of the hip itself causes huge problems for me in regards to pain, stiffness and lack of mobility. My surgeon told me that if the pain starts to get bad enough, that is the time to do something with the hip. My surgeon is a really good doctor who is the resident hip specialist at the hospital that I go too; he also teaches at a university when he's not seeing patients. I just get really tired with having to put up with all of this discomfort and stiffness.....

But again, the best of luck to you!

Jason

Your hip sounds alot like mine was, its crap when all you mates are running around playin football and your sat there on the side lines like a dork. Where do you live and is it warm that helps, here in england (cornwall) it is always cold and that just makes it a bit harder,

hope to hear from u soon

jak

hey jak,

i live in the united states - near los angeles, california - and the weather is usually pretty nice hear. In fact, today it is supposed to be in the 80's and maybe even 90. I have never noticed much of a difference with my hip in terms of weather.

I belong to a local health club and I just started using the swimming pool and jacuzzi for therapy for my hip; it helps to loosen up the hip and back.

I know what you mean about not being able to do the things that you see your friends doing; that's a tough thing. I have always been very active - lifting weights, cycling, hiking in the mountains, working out, e.T.C - and it's getting harder and harder to do those things.

How did you deal with the fact that you couldn't really participate in alot of activities with your friends because of your hip? What was it like mentally for you? It must have been hard. Were your friends really supportive of you?

I bet you can't wait to test that new hip out though, huh? I would be really excited........Keep getting stronger and hope to hear from you soon...

Jason

Im 14 and had my first hip slipped about 4 yrs ago, my second one slipped about 2 and a half years ago. My screws are not totaly in my bone and constantly rub on my muscle. Since I have recently been cleared, my hips have been restricting me a lot from participating in many activities. My doctor has been considering removing the screws if the pain gets any worse. He has already told me that I have about a 60% chance of having a thr by 50, and about a 90% chance after that. I totaly feel your pain. Ok> point of story> my best friends mom had a thr a couple days before christmas, she was walking around church christmas day. She did have some pain but it wasnt nearly as bad as what is was before.

Whichever way you go, let us know! I hope it works for you!

Good luck

--jessica

i wish they left the pin in! I'm now 25 years old & I have not had a pain free moment since...

My surgeon botched the removal & the screw snapped so they gouged a bigger hole to jam in the stripped screw remover & the hole has led to the worst degeneration my doctor has ever seen!

They didn’t even x-ray my hip for more then three months after I started walking funny & complaining that my leg hurt! I’ve been told a hundred times that I should have sued my doctor for malpractice for both the surgery & the fact that the refused to listen to me for all that time.

Then everyone told me to not complain about the pain so the doctors I saw assumed that I was find!

Listen to every word your child says! If he/she hurts then tell the doctor! Keep a journal of how much he hurts every day so that when he grows up the medical community will pay attention & not just blow him off!

My life has sucked because I am in pain all the time! I would be willing to kill if it meant I could get a hip replacement & be able to lead a “normal” life!

I have that vicious circle… I can’t hold a job so I can’t get health insurance so I can’t get fixed so that I can hold a job!

I can’t exercise, sleep, stand for long, walk for long, sit for long, ride a bike, or run at all! I hurt the whole next day almost every time I leave my house because it means i’ll have to walk more then a little bit!

I hope that your child has a better time of it but milk that health insurance for all it’s worth before he gets out of college & has to pay because it is a preexisting condition & he’s gonna be raped by the insurance people!

Oh, & mentally I am all jacked up! I have lots of people telling me that I am just exaggerating my hip pain so that I can be lazy, fat, & not hold a job…

i recently heard that it was one of my best friends that had been telling people this behind my back.

My family seems to be tired of hearing me complain & my aunt gets all health forum when I need to sit down when we have gone shopping at a mall…it’s an all day trip with her & my grandmother…

the depression I have because of this & other things has been just as bad as the pain from my hip.

My doctor now says that the day I get health insurance I am to show up at his office & he’ll see about getting me on the table a.S.A.P.

Anyone know about getting health insurance (that isn’t a million dollars) with this preexisting condition??

Also, I am heavy because I hurt too much to exercise so that will also add $$ to the h.I. But once I get fixed I can get a bike & ride up & down the lake front here in chi-town like I have been dreaming of since age 11 & be healthy again!

Sigh…i’m on the verge of tears reading all these posts but at least 99% of these posts sound exactly like my story!

Thanks for telling your stories!

I'm happy to find something showing that someone young has had a successful hip replacement!
I am 18 and scheduled for a total hip replacement in two weeks, I am nervous, but this was my last resort because 3 previous surgeries have not provided any pain relief and bottles after bottles of pills arent any better.
My story:
i have scfe and both my hips were pinned when I was 11. My right hip dislocated and broke but my left hip was pinned before it could dislocate. My right hip deteriorated and now doesnt even resemble a joint. I have a metal rod with 6 screws holding it in place. It is starting to fuse on its own, that was my alternate solution, a hip fusion but I decided against that. My left hip is doing fine. My doctors had me wait until I absolutely couldnt handle the pain until I got a new hip, and now is the time. I am as active as I can be, I go to college, i'm finishing up cosmetology to become a hair stylist, and I work in the evenings. By the end of the night I can barely walk into the house. My right leg is 1 inch shorter than the other, I get my shoes made but it still throws off my posture which isnt amazing for my back. I am looking forward to getting most or all of the length back with a hip replacement. I have been nervous about the surgery because im young. I realize that I will need more but I want to live "normally" because the past 7 years I have had all of my activities limited and almost no mobility in my right leg, tying my shoe is a difficult task. I am just curious on how that will change after the surgery. What are others experiences with this. I know my physical activities will be limited, I am going on a quality of life basis. If I want to run occasionally, I will run, even though it will wear the hardware faster. I am just curious on what are the activities of a younger person with a total hip replacement. Is bending (after a full recovery) restricted or even difficult.

Here-here!

Congratz on the surgery!

I sooooo wish that I could change places with you...

I know exactly what you are feeling! Every job I have had has been made horrible because of the g.D. Hip!

If I had to stand for more then, say, 2 or 3 hours then I could bearly drive home at the end of the night!

If I had to sit in a computer chair for a full shift for data entry I would almost fall down after I stood up because I would be so stiff! And I won't even go into how much my knee hurts after stting down for a long time!

I too want a "normal" life!!!! I want to do everything that a "normal" person can do! I don't want to leap tall buildings in a single bound...I want to be able to tie my right shoe! I want to wear a pair of boots!

The day that my "recovery" from surgery is complete I am going to go and spend $200.00 on a bike!

I can't wait to exercise! I really want to use the stair stepper I have!!

I dream of going to the gym!! I'm going to sign up for the ymca that is a bus or bike ride from my apartment and I am going to go at least 4 times a week!!!! I can't wait to use an eleptical machine!!!!!

I tried one once...It didn't hurt while I was on it but when I woke up the next day I could, literally, not move my right leg without crying!!!! It took me three days before I could walk farther then from my bed to my bathroom, or my couch to the kitchen...

I know that once I start to really exercise that it will also help the depression!! I will probibly start being able to go the whole time between p.M.S.'s without crying, panicing, or screaming at someone!

God! How many people out there have dreams like that! I don't want to be rich or famous! I want to sleep on my side!!!

Sigh... I just got home from walking 3 blocks and I hurt so bad right now...I know that I shouldn't even be sitting in my computer chair right now because I am going to stiffen up but I have invoicing to do...

Sigh...

Well, congratz on the surgery...And remember...Every time you feel pain durring the surgery just think of all the people out there that would kill to trade places with you!! Lol!

Good luck!

Making me feel too young ot be on here now!


My names lydia and I got scfe when I was 7. Today I have solioces, bone that allows me to dislocate my knees and ankles on command, my left leg is 5 inches shorter then my right leg. I am in a wheelchair but can walk on cruches with great pain. Today I am 16 and surport london international and nationally in swimming.


I was 7 when the signs were there but my parents put it down to a "fase". Anyways all the symtops were there and 4 months later I collaped in a road and never walked again without pain. I was emergencey rused to hospital and it was 2 weeks of on my back and not able to move before they realised what it was. I got my left leg pinned and my right leg we leaft alone for now. After 6 weeks on cruches I walked like a normale person for about 2 weeks then I became every stiff and a little bit of pain. I went back to ospital and they explained the pin had gone into the joint and was now rubbing against the joint bone.


When I was 8 I had corrective surgery to move the pin down. At the same age I had to little blood surply. They done an operation called a external fixator. And that broke lmao and so was a waste of time for me but was ment to allow more blood to pass and for the bone to regenerate. This didnt happen and a year after the pain got to much again (i was on stright morfin at 10) I got an osteotomy done and that worked for another year so I had another one when I was 11. Now they cant do anything but help me control the pain and wait till I can have a replacement. Hope this helped anymore detail and ill b writing a book. Lol

Hello all---

i am new to this board. I got scfe when I was 12 years old and had 3 pins put in my left hip. 16 years later, I still have those pins in there. I feel very fortunate that I only have an occassional pain that doesn't last very long and I am still able to be active. Part of me feels that I may owe that to practicing yoga. For the past 4 years I have practiced yoga on a regular basis. There are all sorts of poses that help your hip flexers and feels really good. I know some of you have had hip replacement and love it and would recommend it. That's great. I think somewhere down the line I might have to have one as well. However, it is a big surgery and may not be the best option for certain people right now. I do yoga for many reasons; emotional and physical. I think it benefits your over all health and I highly recommend it. I have also recently being going to acupuncture for a tmj disorder. It was one of the best health decisions I have ever made and it may help with hip pain as well.

Now I don't want anyone to think that I am against western medicine. I have always heard that there are such great benefits to both yoga and acupunture. I thought I would open my mind a little and give it a shot. Now I am hooked on both of them. I still see doctors when I am sick and for annual physicals, but for something more long term, I try to do the alternative approach. They are not for everyone, but I feel it's worth a shot. I am not an expert in any form of medicine, but I do know what works for me, so I thought I would share.