h2g2 The Hitchhiker's Guide to the Galaxy: Earth Edition

I had a slipped upper femoral epiphysis pinned when i was 15. After 16 years I have now suddenly developed severe pain in my hip. First dr suspected the pin had moved but xray showed no movement and no obvious reason for the pain. 2nd dr suggested inflamation of the hip but with no recent injuries he was puzzled as to why it would flare up.

Have now been on strong pain killers for 2 weeks now and have been using crutches which have helped a little. Have seen 5 Drs and a Professor and still have no diagnosis. I am now waiting for an appointment for an MRI scan to be followed by a CT scan.

If anyone has had a similar experience i would be interested to know your thoughts.

Thanks

Sorry to hear about your problem Paul

It is possible that when you were first diagnosed with SUFE those years ago you also had some necrosis of the femoral head. Now, while pinning would help relieve that, as time went on and the bone grew and calcified around the pin site the underlying bone growth was somewhat delayed. So, while the bone looks healthy and strong on x-ray the underlying pain may be from inflammation around the area.

I could ask my colleagues at work, although I am involved in paediatrics and not so much on the 'adult' side of the disorder, they may have some answers to your queries. Leave it with me and I may be able to shed some light on it next week. Although they may just say they couldn't tell without looking at the x-rays/CT/MRI!

I hope you get some relief from the pain though, regardless of the diagnosis

Hiya..

I too had my hip (left) pinned as a child. I was around 12 when I had 3 pins inserted, I still have them. I had had numerous appointments with my GP from about the age of 8 being told it was growing pains until I started having to do athletics in secondary school, hurdling and me just didn't happen!!

I finally received some physio having complained of further discomfort at about 17 years old... At about 23 I had it xrayed again following an increase in the pain and was told to take nurofen.

I had it xrayed again at 36 when I was suffering extreme discomfort.. I was told I now had developed mild osteo arthrytus.. I'm currently (at nearly 39) in extreme pain, it regularly locks when I stand up and walking upstairs can be agonising. The pain can be stabbing to the groin and hip area, pulsating towards the inside of my knee and down to the inside of my ankle. It can go to being just a dull ache but I'm constantly aware of it and I limp rating from slight to hobbling.

I have an appointment with an Orthopedic Surgeon on Tuesday and I am petrified of what he might tell me. I only found out about SUFE by searching the internet, I was never told it was a recognised problem, but then I was just a child.

I do ride horses but find the more I do the less pain I have... I have recently lost 1 1/2 stone and currently weigh 11st at 5' 5" but this weight loss has made no difference. I'm currently taking 3 diclophenic a day and top up with paracetamol when the pain prevents me from sleeping.

So I know how you feel....

Hi not sure if anyone is able to help. My daughter age 9 was diagnosed with SUFE (R hip) 5 weeks ago after a mis diagnosis from an A+E triage nurse who told us she'd pulled a muscle in her thigh after she'd been limping for 2 weeks.
Anyhow, 2 weeks after that she got knocked over at school and then couldn't put her leg down at all. After 9 hours at hospital we finally got to the bottom of it and it was diagnosed as SUFE. She had the operation the next day and 1 pin was successfully fixed.
She in herself has made a good recovery and with the help of crutches etc is still hopping around on her left leg (non weight bearing for 6 weeks).
My main concern is that noone seems to know/or want to tell me much about this condition and are very reluctant to say what the future holds, will she be able to carry out normal activities? swimming, sports, and most importantly for her - her dancing? she was doing approx 12 hours dancing a week, I know that this will have to be reduced somewhat, but what time scale are we looking at weeks, months, years? how long does it take to heal? will she have physio exercises to do? how long for? is it likely that the left hip will now also slip?
If anyone has any more info it will be greatly received.
Thanks,

lisa,

hey there. I'm the author of this Entry, and a trained children's orthopaedic nurse, so can chat in some detail about SUFE. However, it might be easier to do so through emails, or even by MSN (if you have it).

My email and MSN address is pan_galactic_hoopy_froodAThotmailDOTcom (replace the AT for @ and the DOt with . of course )

Drop me a line and we can have a discussion about all your concerns.

Hi
I too had my hips pinned as a child (at about 13 years of age). I was told that it was called Bilateral Femural Upper Slipped Epiphesis? I had my pins removed at 16 once the joints had fused. Im now 29 and have suddenly started to get pain in the right hip. It isnt a constant pain but usually starts when im walking or with any hip movement. Do you know if this problem can re-occur in adulthood and after surgery? I thought the pain may be related to arthritis but im not sure as it isnt constant and only occurs during hip movement?

Hello,

I'm 33 and currently experiencing almost continuous pain in my left hip. I've seen at least three hip specialists and was recently told that I may have had undetected SUFE as a child. I do faintly remember pulling up in pain on one or two occasions when playing sport but I don't recall any specific incidents.

Now it's at a stage where there is very little cartilage left in the joint and the ball of the joint (not sure what the technical term is) is covered by a few large cysts. The cysts are created by cartilage from the joint leaking into the bone. Having looked at my last xray and the rate it's deteriorating I reckon I've another year or two until the hip needs replacing.

Has anyone else out there experienced anything similar? Does glucosamine & chondroitin actually work (it's costing me nearly £40 a month)? And has anyone else had a hip replacement around my age, will the pain stop, mobility improve?

Sorry for all the questions, any answers welcome!

i had severe bilateral sufe when i was 11. it had gone undiagnosed for a period of a few months and a minor trip over a kerb resulted in my left femur being a good 3-4cm from my pelvis completely and my right femur barely in my pelvis only for a wing and prayer. i had emergency surgery that evening and both hips were pinned into place. i had a very very slow recovery much slower than the ones ive read online. i was in a wheelchair exclusively for 4 months after surgery and it took another 4-5 months before i could walk unassisted again.
for the next few years everything was alright. i had lost the flexibility in my hips and if it was damp or cold or i had been walking loads i had to spend a few days in bed with a hot water bottle on my hips, but that only happened 5 times a year. never being a very active person my limited mobility didn't affect me that much i was just glad i could walk.
however for the past two years or so my hips have got progressively worse. i had initially thought that maybe the pins they had put in when i was 11 were too small for me now but an x-ray showed no abnormalities. i was referred to a rheumatolgoist who put me on daily anti-inflammatorys which helped a great deal though i still walked a bit like a duck but the pain had gone.however my joy was short lived as i found out i was pregnant six months ago and as a result had to stop taking the drugs. now the pain and stiffness is back with a vengeance and i have the added joy of a baby pushing down and adding extra pressure to my hips. im going at the end of the month for steroid injections (which im dreading more than giving birth) in the hope that they will strengthen the joints and stop the inflammation for my last trimester.
im scared but have almost accepted the possibility of a hip replacement. im only 21 but some days my husband has to practically carry me to the toilet because i cant put any weight on my legs. most people thing that hip replacements only happen to really old people but if there is any relief available out there for you grab it with both hands and be thankful. the way i see it is that it better than being bed bound for the rest of your life.

p.s any women who have given birth with this condition? all advise would be appreciated.

Hi, I may be able to give you first hand view of what the condition is like. I had 2 screws inserted when I was 13, 2 months before my 14th birthday. I had them removed in January 09 at 14.

Recovery for the first opperation for me was very difficult and painful. I fell over at school causing additional pain which got worse. They then decided to remove the screws which was certainly not as painful as the first op and I was discharged with physio after 3 days.

Your child as you have said is non weight bearing for 6 weeks then it will probably be partial or full. I am now 16 and my leg does not affect me that much although it does effect what most people take for granted . I cannot run at speed but I can sort of jog. swimming is quite easy and is probably the most enjoyable thing for me at the moment although I do not go swimming much.

Everyday life like going places is reasonably normal and not effected that much apart from I walk with a slight limp as hip movement has been lost.

Please do not let things that I have said make you upset as my surgeon has said that people are effected differently.

I do not know when you wrote what you have said as I have not checked but if you need to ask anything at all, I will be happy to help as there is much more I could tell you but it will take too long to explain everything.

Your child will have reasonable normality buy just remember that there is much worse out there...

wow...i can only wish you all well....
my son suffered a SUFE when he was 12, my GP had xrayed his knee and obviously it came out clear. 4 months later i took him back and was referred to the outpatients, but my son was in so much pain so i took him to casualty the next day...the hospital sent us home and told us to wait for the out-patients appointment...5 months later, (10 months after the original injury) i took my son to the appointment where they xrayed his hip and immediately called for a wheelchair, they kept him in and did an emergency operation to pin his hip in situ.
he is now 21, TOTALLY DISABLED, his left leg is TWO inches shorter than his right as the growth plate was destroyed, and his foot is now turned out almost 90 degrees. His femur has fused to his hip, therefore he has no movement in that joint and is in constant pain. We have since sited for clinical negligence in order to help with getting our home adapted as he cant get up stairs or sit in a bath.

This ailment is so common, and yet no one knows about it until it happens to them. There needs to be much more awareness for this.

anyone who read this who may feel that their child could have this, I URGE YOU, take them to your GP and DEMAND a hip xray....
good luck........

Hi metalgal-utd,

I just came across your post and wondered how your labour went? I'm currently pregnant and had a SUFE in one hip 20 years ago. I'm really hoping to give birth the natural way but not sure how possible that's gonna be! Trying to find stuff on the internet is proving tricky!

I too had both hips pinned one corrective and one preventative, this was after 6 months of attending doctors surgeries and radiographers. I was told it was probably ligament damage which would heal without treatment but then was eventually sent for frog lateral x-rays and the diagnosis was made, I was rushed into hospital and surgery happened the following morning. I was 11 when I had the corrective surgery (right) and since then have encountered intermittent pain which has become progressively worse over the years. I am now 28 and have pain on an almost daily basis, sometimes just aches but sometimes much more severe. Like many others I have been x-rayed a number of times to check the pins and joints but nothing is apparently wrong and I have been prescribed codeine for pain relief. I have recently found out that I am expecting my first child and am very worried that the extra pressure on the hips will cause problems during the pregnany- anyone with similar experience please let me know how you managed.