SCFE and its effects years later...

[Bethany88]

I was wondering if there is anyone out there who has had surgery for SCFE as a child and is now suffering from early onset arthritis and constant hip pain. I am 29 years old and has two surgeries to repair SCFE when I was 10 and 13. I was slightly overweight (not obese) as a child, which I have been told was a contributing factor. I was told to resume normal physical activity shortly after the second surgery, which I had done and continue to do. At 28, after vigorous weight training workouts, I began experiencing sharp groin and dull outer hip pain, and after finally going to see a doctor have been given a pretty crappy prognosis. The doctors seem to think that I have begun feeling the effects of arthritis and are talking eventual hip replacement as soon as 10 years from now. Is there anyone to whom this has happened? If so, how have you gone about physically making the best of it? What courses of action have you taken (cortisone, arthroscopic surgery, etc?) I just want some guidance from someone who has been through it, not a doctor telling me what "could" happen. Thanks.

[JasonAnthony34]

Hi Bethany,

My name is Jason. I can definitely relate to your struggles with the after-effects of a slipped capital  femoral epiphysis. I had both of my hips pinned when I was thirteen years old. My right hip was a more severe slip; my left hip was a mild slip. However, my right leg has been a constant source of ongoing trouble for me - pain, stiffness, achiness, etc - for years. I am 34-years old now, and for the past 4 years I have had a lot of trouble with my right leg and hip. Most of the pain that I experience seems to be muscle-related pain - my actual hip joint rarely hurts. But my right leg is a little bit shorter than the left leg, and the muscles in my right thigh are smaller and somewhat atrophied compared to the muscles in m left leg. My x-rays show some early osteoarthritis in my right hip, and my right hip is pretty deformed and flattened out on top.

I struggle to remain active. I too enjoy working out - weight lifting, hiking, cycling, etc - but it can be pretty difficult to do on some days. My range of motion is restricted, and I experience a lot of pain and stiffness in my lower back(again, rarely do I have pain in my hip)...This scfe problem has been tough to deal with since I was a kid, and psychologically it has had a huge impact on me.....

I have never had any corrective surgery for this other than the hip pinning at age 13. But certain types of surgery - osteotomy, hip resurfacing, hip replacement - are definitely a consideration......I lay awake at night dreaming of how great it would be to have a normal set of hips!

Feel free to contact me......***@****


Jason

[Bethany88]

Thanks for your comment. It's good (well not "good" ah, you know what I mean!) to know that there are others who have the same issues. After the second SCFE surgery the doctors talked like I would never ever have any trouble with my leg again, like it was a miracle surgery. Turns out, the pain that I was beginning to think was a possible bout of Munchausen's Syndrome was finally, after six months, diagnosed as a labral tear. I was seriously begining to think I was nuts! Good luck with everything, and thank you for getting back to me. This is definitely not the easiest thing in the world to deal with, especially getting older and having it rear its ugly head again. :-)

[widenertn]

Hello,

My name is Terrisa and I had a pin put in my hip because of SCFE aprox. 12 years ago. I was 15 when I had it put in and I'm now 27 years old. When I had it done I was limping and having sharp hip pain (I know you know what I mean.....it sucked!) and after going to several incompetent doctors that simply told me to take some f!@@ing Motrin, I finally found a good doctor that diagnosed the problem properly and I was pinned the next day.

I've been able to run, workout, hell....I even do competitive ballroom dancing..........NO PROBLEMS! Until, a few moths ago I started having knee pain, and now I'm starting to have the same pain that I had before I even had the f!@#ing pin put in!!!! I knew arthritis was coming, but, God......please not this soon! No more limping, no more limited range of motion, no more pain, and please ....... no more surgery!! Having that pin put in my hip was a nightmare and to see this problem rearing its f&$@ing ugly head again is causing emotional and psychological problems all over again!

Is it just me, or is it too soon the have these problems? I was told that I would be good for at least 20 years before I started having problems with arthritis and what not! I know there are people out there with far more severe medical problems, but this really sux and I'd like to hear from any others with this problem/situation.

Thank you.....

[Dr Vinod]

The most common treatment of SCFE is called "in-situ fixation." With this treatment, the bone is held in place with a single central screw.
You have to understand that you have a slipped capital femoral epiphysis earlier for which you were fixed with a pin. The diagnosis was difficult as you faced the problem yourself. Now with the present complication you have to visit a good orthopaedician and discuss the pros and cons and go for treatment.
You should not bear weight on the affected leg until SCFE has been ruled out or treated. Take intermittent anti inflammatory drugs and take care!

[Bethany88]

I am now 30 and noticed the pain when I was 28. If the pain continues, get yourself to a good orthopedic surgeon and AT LEAST ask for an MRI arthrogram. I had a HUGE tear in my labrum, an impingement, and synovitis that needed to be fixed arthroscopically, and the arthritis was present, all as a direct result of the SCFE. Rehab after surgery is 6 months, and a surgeon who specializes in hip arthroscopy is hard to find but they do exist.
I also thought I would make it to at least 40 with no problems; a lot of people with this issue do, but nope, not me. I am now 6 months post-op and though not back to where I was 3 years ago, I'm able to run (though advised not to) about a mile without stopping due to pain. If you do have a torn labrum, prepare for a long road ahead. The worst part is the weight gain, but 2 months on crutches sucked also.  

Best of luck to you!

[leda3875]

Oh my gosh, you guys are scarring me!  My 11 year old son just had surgery last Tuesday for a unstable SCFE.  He is doing really good now, still on crutches and wheelchair, we have a follow up today.  But after reading all you stories, I hope it does not happen to him.  Was there anyone else that had both hips done?  My son just had his right and they xrayed his left while he was under, but the dr. said it looked good right now!  Man, this is a serious thing!  Hope everyone is doing ok.  

[Brucemj]

Leda3875.  I had both hips done 49 years ago when I was 12 (my pins could not be removed).  At the time my doctor said to expect arthritis in my early 30s.  However, the arthritis finally developed 5 years ago.  I attribute this a lifetime of playing sports and running.  I have NEVER stopped exercising even now when it is difficulty.  I suspect I will need hip replacement in the near future assuming it can be done given the pins are still there.  I believe your son can have a fairly normal life and possibly delay the arthritis for decades through almost daily cardio-type exercise to increase blood flow to the hips.  Good luck.  It was a traumatic thing for me at 12 so I know how your son feels

[austin515]

4/27/10

My name is austin and i had a scfe which started with constant pain in my knee and rose to my groin and outer hip. The doctor says i will not be able to run for 4 to 5 years. I was hoping there was someone else outer like my self i also have a heart condition. I have a pacemaker which keeps my heart on a regular pace. anyway this hip thing is not a joke at all hope you will get better

[Yellow_Bird]

We live in Barbados and my 14 year old son had his right hip pinned last week.  He is not overweight at all, in fact slightly unerweight but he a fall in Feb 2009 when the basketball hoop he was swinging from broke.  He could not walk and was taken for xrays which showed no fracture or dislocation.  Since then, he has had an on and off limp for over a year now, always after football.  At first I thought he was faking to stay home from school and did not relate this to the fall since the xrays were clear so I stopped him from playing football and the limp went away.  

In Feb 2010 the limp came back and he also had stomach pains.  He had an ultrasound done and was diagnosed with appendicitis but I asked for a 2nd opinion as he did not have a fever or vomitting.  Then he was diagnosed with IBS and we modified his diet but the stomach pain got worse and the limp came back.  He was sent for a CAT scan which showed mild fluid in his pelvis and possible bone tumor.  Also lesions on the right iliac wing.  An xray ruled out the tumor but confirmed the lesions.  Went to an orthopedic doctor who sent him for a bone scan.  This confirmed no tumor but possible previous fracture in the pelvis.  The limp got worse and he had to use crutches so he was sent for an MRI which only showed the above findings and he was referred to Sick Kids in Toronto.  

While we were waiting for an appointment at Sick Kids we took him to a Chinese acupuncturist in downtown Toronto who stretched him, pulled, pushed, tugged, shoved and when he was done, my son was able to walk the next day without any limp, but only for short distances.

We finally got through with Sick Kids and there he was first diagnosed with a muscle pull and they recommended physical therapy but I insisted he be seen by the orthopedic department, Orthopedics diagnosed a possible PRE SCFE and recommended the pinning of the right hip to prevent the SCFE.  They explained that the slip had not occurred, that this was a preventative surgery and that it may or may not stop the limping.  

We opted to do the surgery because we could not risk the slip occurring and this was done in Barbados last week.  The orthopedic doctor here said my son did not need to use cructhes after the surgery but we still gave him a pair to use and on day 2 he was fine and was able to walk without them.  On day three after going for his first post op check up, my son started back limping and 4 days after the surgery it is so bad he has to use crutches once again.

Now the doctor has referred him to a GI specialist to be tested for Crohn's disease.  Can any doctor on this site help me figure out why my son is limping?  I have scanned all of his results and reports and have them on file if needed.

[Looking4Answers1979]

I fell in a grocery when I was 11 years on sugar that had been spilled in the aisle and the next morning I could not walk, so my mother took me to the hospital and told us that I needed surgery right away to place pins in my hip because my femoral was slipping and then 6 months after the surgery I had to have the other hip pinned. Now that I'm 30years old the effect from the condition has really brought emotional distress in my life. I have limited motion and I walk with a ugly limp which affects my sex life, which leads to unsuccessful relationship because I'm restricted to one sexual position, and I guess out of all the men I've dated I just haven't found the one that really loves me for me regardless of my condition, however I was able to create a child but I couldn't deliver him the vaginal. I have seen at least 6 orthopedic doctors and out of the 6 only one told me that he would do the hip replacement, but he couldn't guarantee me that the limp will go away nor regaining 100% full motion, so I'm thinking whats the point in having it done and I prayed to God to give me a answer, so I had the surgery arranged, but I ended up being pregnant the day before the surgery so I wasn't able to go through with it, which was the answer from God that it wouldn't have been a good idea.  The other doctors said that I need to wait until I'm 45 years old unless I have severe pain and my hips don't really hurt much. I just want to be able to play with my son and live a normal happy life so that he will not be teased once he starts school because of the way I walk.

Does anyone have any suggestions or any doctors that they can referred me?

[craigm13]

when i was about 9 i was diagnosed with perthes disease, im 24 now and have been having pain in my hip and knee, i went to the doctor then went for xrays and they said that the problem with my hip was probably due to previous scfe but i never had any surgery as they thought i had something different. they just gave me paracetemols, but now im worried as scfe sounds really serious. should i be worried ?

[pkstew]

My 13 year old son was diagnosed and treated for a scfe on his right hip about four months ago.  Surgery went well and after two months on crutches had a full month of no pain and was able to run, play baseball, football and basketball, etc. all without pain or limping.  Two weeks ago his good hip (left hip) started hurting and got to the point where he was on the couch and not able to move without extreme pain. We went for xrays and was told that they showed osteoporsis of the physis, which indicates a pre-slip.  i am confused as to why the surgeon won't go ahead and pin the left hip.  Does anyone have any comments as to why?

[docnanci]

"take nsaids" ugh! Horrific advise for your liver!!! Consider chiropractic care! Keeping everything in alignment with help tremendously now, and 20 years from now! Keeping the hips, knees & pelvis in proper alignment will slow down the degenerative process because you are in balance (just like the tires on your car). Chiropractors can also address the surrounding musculature, which too, is probably a pain generator. So, save your liver & see a chiropractor!

[MichelleB321]

I had my hip "pinned" with 4 3.5 inch screws when I was 11.  After weeks of pain, getting a diagnosis was a relief, but now, 27 year later, I have been living with chronic pain.  If another doctor tells me to "just take some motrin" or "how bout a cortizone shot" I'm going to B***H lick them!  After x-rays, I went to see a orthopedic surgeon to see about getting my femur straightened out (7 years ago).  I was told I wasn't a good candidate for hip replacement (which I do not want) because my cartilage is really good.  He seemed to think a cortizone injection would fix everything.  It hurt like hell, but did NOTHING to ease the constant chronic ache in my hip and groin.
Now I'm developing knee problems.  Due to the birthing of several babies (all beautiful and totally cute) I'm back trying to find someone to fix my femur.  Any suggestions?  It seems that most of the pain I am experiencing is muscular.  I keep getting tendinitis in my inner thigh area, my shorter leg is constantly throwing my back out of aligment - chiropractic care is great, but I can't live in her office, so anyone with some advice, please share.  I'm fed up with hurting all the time.

[Waldo1969]

After 2 years of trying to figure out what was wrong with me, I was finally diagnosed with SCFE and I had my left hip done when I was 16.  My left leg is 3/4 inch shorter than the right.  I am now 41.  Very active post surgery until the last few months.  The left hip and lower back are getting very stiff.  MRI shows three herniated discs in back.  The PT guys says a hip replacement may be needed.  I have spent the last 3 weeks trying to find data on long term effects in patients.  Does anyone have suggestions and/or know of any experts in the field that deal with longer term issues?  

As for those just now being diagnosed, the surgery will defintitely help.  Be prepared for leg length discrepency, as this seems to be somewhat common.

[TLEP]

My history with SCFE: I am 23 now and 14 years ago I had a very unstable SCFE of my left hip, not only did it slip but I was walking down there stairs as it happened which obviously made it much worse. So in Apr of 1997 I had a pin put in my left hip at the age of 9. May of 1997 I had a pin put in my right hip, I was lucky enough for them to have caught that one. In Jul of 1998 they removed the pin in my left hip and over the course of that year they found that I had developed avascular necrosis (loss of blood supply to the joint) as well as early stages of arthritis. October of 1998 they did a triple osteotomy on my left hip and removed the pin in my right hip.

Now my doctor, even being the best for miles, was kind of contradictory. They have been trying to replace my hip since I was 10, yet he told me even without I would lead a normal life with normal hip function. 14 years later, I can not reach my left foot, I can not see the left side of my leg, I have pretty bad back pain as well as knee pain.

I'm also getting scared because I have begun to experience pain in my "good leg" and I know that in a few years I will need to have surgery on it because lets face it - it's inevitable. The condition of my left hip however is in NO condition to support me during recovery so over the past few months I have changed my diet, started working out, and have been slowly increasing the stress added to my left leg (walking longer and longer distances, range of motion exercises, even very low weight lifting with it) I went for my first run today, can't really move now but it felt great.

So in my opinion the best way to overcome SCFE is really to just stay in shape, keep it moving EVEN when it hurts. If anyone wants to contact me about it (I know it's hard to find support for this condition) my email is thelastescapeplan at gmail

[Lucying]

Hi,
Just found this thread, I'm 20, limped for a month with groin pain aged 11, then mum took me to the GP, who told me I pulled a muscle in my thigh, gave me muscle relaxant drugs which did nothing, mum didn't like the GPs advice so she took me to an orthopedic doctor, lots of x-rays later said my hip was pre-slip stage (SCFE),  put me on crutches for 4 months hoping it would go away, pain went, came off crutches, 2 weeks later pain returned, orthopedic surgeon decided it was mild slip, operation the next day, 6 inch pin inserted in hip, 2 more months on crutches, 6 months off sport, no pain for 8 years no problems with hip except for limited internal rotation which doesn't affect day to day activities much. 8 years on, and now my hip aches when I've been standing up all day, however it only aches at the end of the day, not while I'm standing up. So I guess its ok, just hope it doesn't get any worse.  :)

[Bethany88]

It's been almost three years since I posted this question and I am still following it to see what everyone else is dealing with. Most of your situations are very similar to mine, and for that I am sorry. As you can see from my last post, I had the arthroscopic surgery in June of 2009, just about 2 years ago. It worked really well - for about 1.5 years. Not worth the money for me.

I have been in excruciating pain for the last few months now, with a loud SNAP every time I am improperly positioned. Painful AND embarrassing. To the person who recommended going to a chiropractor: Do you actually HAVE SCFE/hip arthritis? Or are you a chiropractor hawking your wares (my guess)? Because it doesn't work. I don't care how "aligned" you are, if the cartilage on the inside of your hip is shredded like coleslaw, you ain't gonna feel better for very long after someone pokes around with your back/legs. Actually, after I went to a chiro out of desperation it ended up making my pain WORSE. My primary care doc even told me it was a bad move and would have stopped me if I had told her I was going. No doubt it works for many, just not for those of us whose hips are FUBAR. A physical therapist, however, can help immensely.

I am being treated now with a combo of PT and meds (and a 40+ lb weight loss), and while they help give me my life back, I hope that there are other options on the horizon for people like us!

[Yellow_Bird]

Further update on my son (family from Barbados):

The hip pinning did not help my son's limp.  Nor did any of the other specialists were able to get my son off the crutches - not the neurosurgeon who did a nerve conductor test and an MRI of the spine, nor the rheumatologist who tested him for juvenile arthritis and other auto immune diseases.

In frustration I went to a homeopath who said there was a lot of inflammation in his body esp in his right leg.  He put my son on homeopathic meds and did a laser light treatment twice weekly and told me it would take 2 months but I would see a difference in 1 month.  I was skeptical but did not know where else to turn.  At the end of 3 weeks my son was able to walk short distances without crutches.  By 6 weeks he was off crutches completely.  The doctor also recommended my son stay off wheat as he was gluten intolerant and this seem to help.  

My son is now almost 16 and once in awhile his leg starts to hurt.  Usually if he indulges in foods with wheat.  I now regret that we did the hip pinning - I do not think it was necessary at all and dread to think what symptoms he will have as a result of his surgery later on in the future.  If only I had gone to the homeopath first.

[susie54321]

SCFE diagnosed and 3 pins placed at age 10, then removed at age 13.  After the initial recovery, no restrictions.  Very subtle arthritis on xrays a few years ago.  Now, I am 38 and having mild pain in certain hip positions, but mostly have dealt with repeated ankle sprains, an ankle fracture, sprained knee, and sciatic pain on the same side...over the past several years.

All in all, I am terribly grateful that they pinned me back together back then.  Without my amazing surgeon, my hip (and anyone with a SCFE) would be much worse, restricted, limp-causing, or even deformed...as it is for patients in other countries without access to Orthopedic Surgery.  I can deal with whatever degeneration comes my way.  I work to keep flexible by training in martial arts, cycling, and stretching.

As for that chiropractor ad by "docnanci":  NSAIDs do not damage your liver.  They cause GI upset or even ulcer in some, as well as kidney compromise...but not liver damage.

-getting by, post-SCFE...

[pokupine]

Good day guys, my name is Desireé - after reading all these comments I'm definately feeling it now. My son had his right hip pinned because of scfe in March 2011, five months down the line I honestly dont think that he'll be "normal" again because his hip looks totally deformed, with the limp and the 'frog-leg' that is coupled with this condition. He is completely stiff and complain of pain in his hip or knee at times.  I'd like to know whether the limp will go away and if mobility will get better, if there's anyone out there...

[cautrey26]

I am actually in the hospital right now with my 12 year old son, waiting for them to take him to surgery.  Wow!  These comments have really scared me about this surgery. They are actually doing more extensive surgery and re-positioning the hip to the correct position other than just pinning it.  They are also going to pin the other side for stability.  He actually hurt his hip about a year and a half ago playing football and the doctors kept telling me the limp was from groin pains.  He was playing soccer over the weekend and fell down on his left hip causing it to slip completely off the growth plate.  I guess every case is different, so I am just praying that God will give the doctors wisdom to make the necessary decisions when they begin to operate on him.  

[Helenpearse]

I had 3 pins put in one hip when i was 11 and 2 in the other when i was 13. they removed the ones from the left side but left one in right side for some reason anyway 11 years later i am in so much pain finally been diagoned with fai and having an operation next week to smooth hip over. surgeon said he will need to remove the pin before he can do the other operation and that it shouldnt have been left in, anyone had pins removed after they been in ten years plus? going to be a big operation plus smoothing hip over.

[Arrayne]

I'm gonna have to go through the surgery and was wondering how long it hurts afterwords

[JLynn83]

I had 3 pins put in my left hip when i was 10 they tried to remove them when i was 12 and they werent able to get them out. I went years without having problems other than my leg is not straight by any means and i still walk with a slight limp. I am now 28 and over the past 2 years it has been awful i have pain in my leg almost all the time and my lower back is just like a lot of other people have wrote bad in the mornings sometimes i have a problem throughout the day or depending on what im doing i have problems. Most recently it started feeling like my hip was popping when i moved certain ways and walking long distances just doesnt happen. It feels like my hip is grinding like bone on bone and i get a shocking pain down the front of my leg. They finally sent me to an ortho doc. Which told me i have arthritis in my hip and they said its not severe yet but its not mild and they understand y im having problems so yet did nothing. The consulted with an ortho surgeon and he said its a gaurantee that im gonna end up with a hip replacement but they say we dont like to do them before ur 40 so i guess im just gonna have to put up with everything till a doc. In my area feels its a concern to them. Only one seemed to have a slight care when he realized im also having some bladder problems and then acted kinda funny and said dont miss the urology appt. Ur primary doc set up. So my primary care doc. Is wondering if its not related to my hip. But the ortho i had that originally did both my surgeries is no longer practicing and never sent my records to my primary care doc. So they dont have anything but a letter saying i need to have an ortho consult in the future which i was never even told. So i figured approx. 18 years later wouls be in the future now that im having a lot of problems. But they keep saying my lower back has nothing to do with my hip so they keep doing mri's and have found nothing i do believe 2 weeks ago when i saw my ortho. They r starting to c this all may be related i guess but getting the docs around here to do anything is a laugh. So i know what it feels like to go through this also and feel for anyone that is also having problems. I still think docs and other people dont understand unless they have gone through it or r going through it. It effects ur everyday life and i would just like a little relief i know its never gonna go away its only gonna get worse down the road but i would like to run with my kids and go for long walks and just have a little less pain/ tolerable would be a good word.