SCFE (Slipped Capital Femoral Epiphysis)

[PaulSim]

Hello,

I was diagnosed at 38 as having arthritis in both hips, more severe in left than right, but was advised to hold off on THR as they considered me too young. I’m now 45 and I’ve recently been back to my consultant after the pain and lack of mobility has got considerably worse and he believes it’s time for THR on my left hip.

I was just wondering if anybody else had had the same after having SCFE as a child and any problems associated with it? Thanks.

 

[sfbaylover]

@PaulSim

Yes, I can identify with your struggles. I, too, had SCFE as a youngster (I was 13 when I had both hips pinned) and unfortunately, I always had residual hip problems following the surgery. The hip-pinning surgery just stabilized the slips; it didn't reposition the hips into the correct anatomical position, therefore, my hip anatomy was always abnormal. The ball portions of both hips were misshapen and distorted, with the right hip (the bad one) being the most deformed.
My right hip was a severe slip, and my left hip was a moderate slip -- but both hips were always stiff and problematic. Growing up, I never had normal hip mobility; my hips were always restricted, and my gait was a bit awkward, with my feet tending to splay outwards as I walked. And although I led a very active lifestyle and didn't have to really avoid anything per se, I never felt normal physically and always felt restricted and a bit awkward while engaging in various physical activities; I simply couldn't move or bend or pivot or twist normally, and that made being an athlete (or just a hyper-athletic person) somewhat difficult.

I also had chronic pain over the years related to my altered hip biomechanics. This pain problem was a fixture of my life all through my late teens, 20s, 30s, and now into my 40s; I've been in some type of pain pretty much since about age 17 or thereabouts. I had two or three excellent years following the hip-pinning surgery where I had zero pain, but after that, the pain started. The pain was mostly lower leg pain (knee pain, shin pain, ankle pain) along with lower back stiffness and right leg weakness (my right leg was always underdeveloped and weak relative to my left leg, and this imbalance greatly contributed to my overall awkwardness). But now into my 40s, my lower back pain and stiffness has increased, and my hips are stiffer than they have ever been, to the point where I frequently wake up in the morning walking around like Frankenstein, all stiff and immobile. It generally takes several hours for me to loosen up.

My goal is to have my right hip replaced later this year at HSS in New York City. My right hip has degraded enough and is sufficiently arthritic to warrant hip replacement, so I think that this year is the year to finally start fixing these problems that have been dogging me all these years. I've suffered a lot emotionally and psychologically over the years because of my hip problems (and because of the limitations that they have imposed upon my life), and I'm hopeful that I can alleviate much of that while regaining a high level of physical activity. Because my athletic capability has shrunk significantly over the last several years, and I'm increasingly becoming more sedentary, which I don't like.

Good luck to you in your journey, and I hope that you find a good solution to your hip problem. As long as you select an experienced, competent surgeon, you should have an excellent result. And the chances are high that your hip replacement will last a long time, as the newer plastics and ceramics in use nowadays are highly durable and long lasting.

 

[Eman85]

You can read my posts. Short story L hip pinned almost 50 years ago, arthritis and bone on bone both hips. Dr. recommended 30+ years ago waiting. This year I had L replaced which was the bad one, probably take the rt one to the grave unless it really acts up more than it has.

 

[Pumpkin]

@PaulSim '
Welcome to BoneSmart, glad you joined us!

It is not uncommon after SCFE, to proceed to THR as an adult.
You are not too young, we have many teenage members with SCFE, who have had gone onto successful THR's.
Teenage hip replacements
No reason for you to lead a limited life while waiting to be "old" enough. Whether you need THR, depends on your function, not your age.

There is a score chart, in the articles I am going to leave for you, be sure to fill it out so both you and your doctors can see just how limited your life has become.

If you are at the stage where you are planning to have surgery but are looking for information so you can be better prepared for what is to come, take a look at these links:
Recovery Aids: A comprehensive list for hospital and home
Recliner Chairs: Things you need to know if buying one for your recovery
Pre-Op Interviews: What's involved?
Longevity of implants and revisions: How long will my new joint last?
Score chart: how bad is my arthritic hip/knee

And if you want to picture what your life might be like with a replaced hip, take a look at the posts and threads from other BoneSmarties provided in this link:
Stories of amazing hip recoveries

 

[PaulSim]

Thanks for the replies, I see the surgeon next month and then it’s waiting for a date for the next part of my hopefully pain free journey.

 

[Josephine]

I was just wondering if anybody else had had the same after having SCFE as a child

During my career (55 years!) I've seen and dealt with no-end of patients having THR after childhood SCFE (in the UK we call it SUFE! - slipped upper femoral epiphysis). Did you have it pinned as a child?

 

[PaulSim]

It started as a teenager, 16 when I had the first pins in my left hip followed a year later by pins in my right and then a year after that they removed two of the three pins from my left being unable to remove the third, I was so fed up after having three major ops that when they called me back to remove the pins from the right hip I refused saying if they could leave one in my left then they could certainly leave the two in my right (I put that down to being a youth and thinking I knew everything).
I am based in the UK and everybody I saw at the time called it SCFE to me, I’ve gone nearly 30 years calling it that, I’ve seen several others mentioning SUFE on here I’ll have to get used to calling it that myself now. Thanks for replying.

 

[Eman85]

I only had 1 pinned back in 1969, I really do wonder what if anything is the purpose of pinning. I went through the same thing about pin removal, they didn't get any out. Of course with the THR the OS had to get them out so it was a little more complicated. I honestly didn't know what the actual condition was called until I was almost 30yo. Really didn't matter, it was just hip pain to me.

 

[Josephine]

I really do wonder what if anything is the purpose of pinning.

Well even these days, we don't have any alternative to this malady other than pins. They do actually work for a period of time if that only involves getting the patient from 12 to 32!

 

[sfbaylover]

I really do wonder what if anything is the purpose of pinning.

Left unpinned the hip will continue to slip and subsequently become more deformed, which increases pain and disability. The pinning procedure stabilizes the slip and prevents it from getting worse. Although, in some cases, a person's hip fuses (turns to solid bone at the epiphyseal juncture) before the slip becomes too severe, at which point pinning is unnecessary. Many people with post-SCFE related arthritis never realized they had the problem initially because the slip never progressed to a problematic stage prior to the hip naturally fusing.

But in my case, I could barely walk by the time I saw the orthopedic surgeon. I was in so much pain and it angers me that I wasn't brought into the doctor sooner; if I had been diagnosed and received treatment earlier, I likely wouldn't have such bad hips today. My family doctor initially diagnosed me with "growing pains" and prescribed some anti-inflammatory medications. It was only after a second and then third follow-up visit that he finally referred me to an orthopedic surgeon who found the problem.

 

[Icespirit5]

Hey! I am 24 and had SCFE when I was 10 on my right hip. Ive been contemplating a THR for 2 years now, but I am going through the same issue. Im too young. The pain is not agonizing yet (honestly would rather it not get that far), and I've modified and adapted the way I've done things. My range of motion is super limited and is what causes me the most pain and problems. On an average day, I ache some and mostly deal with lots of sharp sudden pains that are extreame for a moment, but then gone so pain meds arn't really helpful.
Walking around is okay for probably up to 1.3 miles. Thus, my OS is telling me to wait as long as I can. I am really wondering if there is a point in waiting a few years. Its not like I won't need a revision some point down the line regardless. I want to be able to ride a bike again and tie my shoes while they are actually on my feet. I'd also like to be able to walk longer distances and hike.

Did you have range of motion issues or was their more pain? Do you regret waiting?

 

[Eman85]

My pain started pretty early, ROM was very poor in elementary school, didn't know why. L pinned at 14 rt never pinned both slipped. I have no regrets about waiting, better parts better procedure and I should be one and done as it should last the rest of my lifetime.

 

[PaulSim]

Range of motion in my left hip (easily the worst of both) is severely limited now and that along with the pain is probably why they’re now recommending the THR, I think personally I should have pushed a little harder at an earlier stage for the surgery.

 

[sfbaylover]

@Icespirit5

My range of motion is a big problem, as well as the overall stiffness of my hips (I had both hips pinned at age 13). In fact, my range of motion and stiffness difficulties are more troubling than any pain I experience, as my pain levels are never that bad, but they are pretty constant though. A big problem for me is that my bad hips negatively impact my gait, causing me to walk abnormally, which stresses my lower back, knees, ankles, and feet. So, in my case, most of my actual pain is secondary pain; I have very little actual pain in either hip.

But my hips are so stiff that I can't sit Indian style on the floor; when I try to sit that way, both of my knees remain jacked up at about a 45 degree angle; normally, a person who sits Indian style can bring both heels together and place both knees firmly down onto the ground -- but my knees remain significantly elevated. And my internal rotation is just about zero degrees for both hips (meaning I can't rotate my legs inwards much at all). All of this hip stiffness prevents me from bending or twisting or stooping or kneeling normally, which further aggravates my overall pain levels.

So for me, my physical constraints are much more troubling than the actual physical pain.

 

[Icespirit5]

@sfbaylover
Hallelujah I'm not the only one! You pretty much summed it up! Haha criss cross has not been a thing since I was 10. I dont have any external rotation and very minimal internal. I've been seeing a PT and that has helped with stiffness and they even told me "hey you this will help your symptoms, but it's not going to fix it. It's pretty bad."
My OS told me wait until I can't, and we will do it when ever you want. Its hard to think 'am I in enough pain or restricted enough yet?'

 

[sfbaylover]

@Icespirit5

Deciding when to pull the trigger on having a hip replacement is a tough decision for many, especially for people who are not yet in severe pain but who are nevertheless in some pain and who are severely restricted physically by their bad hip (or hips). At your age, I considered having a reconstructive procedure to try to fix my hip issues, but I decided against it. That surgery (called femoral osteotomy), sounded like a very big deal and there was no consensus that the procedure would reliably "fix" my issues or even improve them to any great degree; some ortho doctors recommended the surgery and felt that it would greatly improve my situation, while others advised me to just leave my hips alone, as the osteotomy surgery was not as reliable as hip replacement and often times made things worse. So, I put up with all these "hip issues" all through my young adulthood, and I must say that it was always a huge psychological burden to drag around as a young man.

 

[Icespirit5]

@sfbaylover

Yeah, I had an southwick osteotomy about 5 years after the pinning. Recovery time is ridiculous, but it helped for a while. I think that might be what caused my femur to be misshapen though. It grew back funny and curved. They said it could last me until I'm 30. I've been told by other doctors that it is just a quality of life thing at this point.

 

[Aisling]

I also had SCFE in both hips when I was 11, that was 41 years ago. I had a hip osteotomy on both with plates and pins. They never took the pins out of the left side, and I know I'm getting closer and closer to a hip replacement, so I'm starting to prepare.

Efram85, I'm very interested to hear about your surgery since it sounds similar to what they'll have to do to me with taking the pins out for the new hip.

 

[Eman85]

@Aisling It's pretty wild what they do for a regular THR alone. The OS had to cut the femur and then remove the pins by clamping on them and unscrewing them from what was the inside. Couldn't get all of them like that as he had to cut one to get the other so he had to drill/grind the last. There's still a small piece of it in the bone. It's kinds gruesome but it's what had to be done. The holes appeared on the x-ray where the pins were, they'll fill in. Just find a OS that has seen it all and is confident they can do it.

 

[sfbaylover]

I had pins placed in both my upper femurs when I was 13. The pins eventually broke off inside each femur, though, so when it came time to remove the pins from both hips, the ortho doctor could only remove the pieces that were closer to the skin surface. He said it would be too difficult and would be too big of an operation for him to go in and try to remove the deeper imbedded pin pieces, so he left them.

Fast forward now 30 years, and my hip replacement specialist said the pins being in the upper femur would be no issue for him. He said normally the entire hip replacement procedure would take one hour, but in my case, because of the pins needing to be removed, he would need an extra 15 or 20 minutes to cut the bone a certain way and then back the pins out. So, at least in my case, it's not much of an issue.

But unlike Aisling, I never had the plate and screws running down my femur, so I can't comment on how that additional hardware would impact the THR surgery.