Poorly diagnosed condition

Bones, joints and muscles
1

As a pediatric physiotherapist, with a special interest in juvenile hip conditions, it is interesting to hear everyones experience of this often poorly diagnosed condition. I'm sorry to hear quite so many people out there have had real problems with the medical team coming up with the correct diagnosis. As many of you have noticed the literature is fairly hard to come by unless you have extensive access to medical journals.

The reason that I am posting on this forum is to hear from anyone who has suffered SCFE and who would be happy to describe their original symptoms. Many of you have said that knee pain is often the first sign something isn't right and this fits with the majority of cases of SCFE I have seen. I would be really interested to hear what everyone else out there feels?

2

In reply to your post...

When I was 13 i noticed i started walking with a slight limp and could turn my leg back to front. Obviously this wasn't right so I went to the doctors to get checked out. The doctor told me it was a trapped nerve and sent me away with some pain killers. A few weeks after that I fell down the stairs and couldn't walk on my leg so I was taken to A&E. As the pain was in my knee that's the area they x-rayed and sent me home as obviously there was nothing wrong with the knee. Went back to see a different doctor and thereafter was referred to a consultant at the hospital. he diagnosed me straight away with SUFE. Had my first operation in 1999 to pin the hip back in, and then a week later had to have another operation to change pins as they were digging in the pelvis. Had another operation a year later and that didn't work. for 8 years i had severe pain in the knee and hip, walked with a limp due to having one leg longer than the other. Have a slight curvature in the spine due to the way i walked. Had very restricted movement in the hip area which resulted in not even being able to put my own socks and shoes on. I am now 21, last December (2007) i had another operation which was a total hip replacement. my leg length has now been corrected, pain free and I am able to do so many things I was unable to do before. After reading peoples posts on here it upsets me that quite a few people are worse off than me and they have been told they cannot have a hip replacement.

3

Im Alexandra from Australia. wow, my experience sounds very similar to you, in terms of the symptoms you suffered. I first realised something was wrong when my left leg was turned out when i walked. I had severe knee pains and my limp progressed. I was diagnosed with torn thigh muscles.

X Rays were also taken of my 'sore knee', nothing looked wrong so i was sent on my way. My Mum knew something really bad was wrong because my left leg was now shorter than my right, causing my limp to be very obvious.

I was taken to the Royal Childrens Hosp, within 3 minutes of the doc looking at a total leg x ray, i was diagnosed with a SUFE. 1st op pin in, 2nd pin out and growth plates in right knee taken out to corrent leg length,4th cut femor and corrected the allignment of my leg, held together with a 6cm plate, 5th plate out, 6th dye injected into leg, revealed cists (not sure how to spell) in the epyphysis,and arthritis. 7th Chiped away parts of the epyhysis to hopefuly give me some flexibility, to make it smoother. Now held in place with 2 screws.

7 operations later, i still have very limited movement, struggle to put socks and shoes on my left foot, and I am not able to have a hip replacement untill i am in my 30ies. I currently have 2 screws holding my femor in place. Very sore. Im so sick of it all. I am now 20. I am STILL very limited to what i can and cannot do.

Im so happy for you that you are pain free and have a new hip. I hope I will be like that sooner than later. Alexandra

4

I am so sorry to hear about your hip condition and cannot believe they will not give you a hip replacement until you are at least 30! I did not realise how common SUFE was until I came onto this site. Although apparantly it is more common in overweight teenage boys and in the left leg, oh and i happen to be a slim girl and it was my right leg. What are the chances of that.

I can relate to how you feel when you say you are sick of it all, i used to feel so paranoid when i walked as i just thought people were starring at me. it doesnt do much for your confidence!

I can't start to explain how strange it is to have a \"normal\" hip again and hope you will get to have yours before you are 30! as embarrassing as it is to tell people i've had a hip replacement at 21 i really don't care.

Take care and I hope you get sorted with your leg very soon. Katie x

5

Thanks Katie and Alexandra,

It's interesting to hear your stories. when you were first walking with a limp, aged 13, Katie did you get any pain? I'm glad to hear things have worked out well for you.

Alexandra, was there any \"trauma/incident\" that started all your symtoms off? Again it is interesting to hear that you had knee pain - its a common place for \"referred pain\" from the hip.

If anyone else has any recollections of when they first noticed the symptoms of SFCE, i would be really interested to hear them

6

Not that I can remember. It wasn't until I fell down the stairs and knocked the hip right out that I started to get pain. If I hadn't of fallen down the stairs apparantly It would have been a lot easier to correct the hip and probably would not have needed a hip replacement. But these things happen I suppose! It was only picked up on by my mum as she noticed I was walking with a limp and I could turn my leg back to front.

If you want to know anymore then just ask and I will try to answer best I can.

Thank you, I'm pleased I'm all sorted too.

7

Hi guys, Alexandra again,

There was an incident when I began to know something was not right. I was 11, I was at school participating in sports, when i jumped over a hurdle, i landed awkwardly, and i felt a weird click sensation in my hip, my whole leg was sore for the rest of the day, then my knee (referred pain) became very sore all of the time.

I was a ballet dancer then too, very flexible, but my most flexibly leg was the right, my SUFE occurred in my Left, so I guess ballet had nothing to do with it.

Im so happy for you Katie, that you no longer have to worry about your hip and pain. I have my 2 screws in now (7th op) but I really want them out soon, because my op swelling is going, when i sleep on my left side, i can feel pressure on the screws, feels really yuk!!

I am so glad i found this site, its so nice to talk to ppl that totally understand my condition and share experiences with others =D Im Australian, and i googled SUFE and found this site, love it!!

All the best Katie, and i hope my incident/experience helps you too, with your knowledge Mike. Kind Regards Alexandra.

8

hiya my name is star and now im experising the same thing but i have been to hospital again and my bone has died at the top so im not allowed to put any wait on it and im getting my pin out next week and i will tell u more wen i find out more xxxxxxxx from star laker xxxxxxxxxxxxx

:? :oops:

9

I'm not sure if I'm glad to have found this forum, with such sad stories of multiple surgery :cry:

I'm just on the begining of what I think will be a long journey along the SUFE road with my daughter (if your experiences and my research is anything to go by).

It's been a long time and a lot of pain to get to a diagnosis. 10 months ago, my daughter, then 10 (now 11 and a half) had a fall, grazed her knee, nothing major. A few weeks later she started complaining of pain in her mid thigh, left leg, especially if she had been sitting down for a while, getting out of the car for instance. She described it as a cramp-like pain. Then she started limping.

Took her to our Doctor, who sent her for a hip x-ray. This was reported as normal :x So he sent us for physiotherapy, and she was treated for an inflamed tendon. She improved enough to be discharged.

Then in February this year, it flared up again. Back to doctor and physio. Physiotherapist thought it was due to a growth spurt that the tendon had stretched again.

By the begining of May, there had been no improvement, and seemed to be getting worse, limping worse, foot turned out to the side, unable to weight bear.

Physiotherapist put her on crutches and thought another x-ray would be a good idea as it was nearly a year since the last one and 'there might be a problem with the growth plate'. Good call by the physio smile

Unfortunately, events overtook us after my daughter slipped and fell on a wet floor, and couldn't move at all, and in so much pain.

Fast forward to Accident Centre (thank god for Entonox, she looooves that!) and emergency surgery the following morning for a severe unstable slipped epiphysis.. acute-on-chronic. She's had a cannulated screw inserted and is on crutches and toe-touch weight only. She's just started hydrotherapy.

The surgeon was angry it hadn't been picked up 10 months ago, as there were early signs on the original x-ray. There were also concerns that no one acted on the second x-ray taken 2 weeks before she fell as that showed a severe slip. I told him that she never had any symptoms in her hip, always her thigh and knee. He said that's one of the main symptoms.

I'm kicking myself that I didn't know this, otherwise I'd have been pressing for different treatment 10 months ago. Now she faces further sugery to bring the leg further into line and there's a risk of the blood supply dying.

GP was also concerned and angry and wants me to make a complaint to the hospital (difficult as I work there as a ward sister!). I am concerned about her prognosis and long -term future, so I will be following this up.

Unfortunately, her right leg is starting to ache like the left did to start with, so I'll be contacting her surgeon to check that as well. I've got everything crossed that it's not happening to that hip too, but don't hold out much hope.

10

Hi there,

I suffered from a SUFFE aged 12, i'd had general leg ache and a limp for 3 months but one evening fell over and coulnd't weight bear or move my leg so headed to A&E. They were amazing, with in one hour i'd had my hip x-rayed and was in traction !

Had two screws inserted the next day and was forced to stay in bed for 3 days, after this was non weightbearing for 3 months and wasnt allowed to do any sport for 12 months.

Didn't have any physiotherapy at all and now aged 26 have a few problems. Cant put socks or fasten shoes, as it hurts to put weight through my leg i tend to lean and after doing this for so long find it so hard to straighten my back (kinks slightly!)

Been to Drs but they wont think about doing anything until in 30's ...... 3 and a half years to go !

11

Hi I see you are wanting a bit of info on any pain/symptoms present in SUFE. at the start of september my daughter complained of pain actually in her left hip i thought she must have pulled a muscle when playing netball. deep heat, keep it moving as per norm. start of october still adamant her hip hurt inside took her to doc he diagnosed pulled muscle but if no better go back. went back two weeks later he referred her to ortho consultant urgently. attended outpatient appointment had xray refused to let her leave as 'dangerous' to weight bear. she had bilateral screws put in the following day and is now on crutches. cannot play contact sport (to include trampolining) for at least 18 months so is gutted especially as we had bought her a trampoline for her birthday next week!!

consultant surprised she had actually complained of hip pain as it is usually referred but hers presented itself in the hip, hope this helps.

em

12

It's in a way, comforting to know that other people were misdiagnosed as well.

I'm in australia by the way!

I felt a snap in my hip one day a few months before my 14th birthday and thought the muscle had torn. I went to the local gp when pain worsened after two weeks. She referred me to a physio who treated me for a torn muscle. I think she realised something wasn't quite right, as she sent me to have an ultrasound on my upper leg where I felt the pain. They saw some swollen muscle tissue and therefore concluded that I had torn a muscle really quite badly. I was amazed at how much it hurt considering it was only a muscle.

Then, a week later as I was walking up the stairs it slipped the whole way out. When I arrived at the hospital the staff thought I was faking the pain?! Weird.

Then they took me to have xrays and realised that the head of the femur had slipped out and had been out for hours now . They thought the top of my bone had died, but after the operation realised that it was still alive.. what a miracle.

They put two titanium screws in my left hip and now I also have one in my right hip because the other side started to slip. They're all still there! Apparantly they're never going to come out, is this the same for anyone else?

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on nov 17th 2005 i rec a call as i got to work my son had been pushed over and was upset as i managed a store i had to get cover it was almost two hrs before i got to him i did ring several times i was told he was ok

as soon as i saw his face i knew he was far from ok i asked for an ambulance they said it not policy we tried to put him in car but the screams made me cry we insisted on an ambulance they had to get permission for some reason shock i dont know i forgot my mobile in my bag stupid ,eventualy an ambulance turned up jordan had to be knocked out with entinox before he could be moved when on stretcher i can only describe the position as a boomerang

in trauma the nurse had a go at me for not gett him there sooner and started on about blood flow he did apolagise when told the circumstances

jordan was xrayed this showed a s.u.f.e but his had come right off broken through growth line he was in traction for 2 days then op to pin in dec he was in severe pain an xray showed the pin was destroying his ball joint it was crumbling away they also said he had developd avasculer necrosis

pin remomoved smaller one in place in april 2006 we were told he would be in a wheelchair until 26 then a breakthrough we went to outpatients in may and met dr ally he told us about a valgus osteotomy that could be done at royal national in stanmore he had worked under mr nejad there

jordan was refered and in sept we met mr nejad in nov he removed the pin as it was doing so much damage and in april 2007 he had v o done

he was walking again .He lost leg length and has to hve shoe raised

he is such a good young man never complains last monday 15th june2009

we were told his hip looked bad there is no gap on growth line he has stopped growing best of all he can have his hip replacement as soon as he is ready and they can get leg length back

the worst thing bis lack information i want to start a suppot group up as i gave up work but do not know who to approach i know i realy needed someone who understood my health has suffered my marriage of 34 yrs has broken up and i know so many people feel the same way sorry a bit long winded jacqui

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sorry doctor saw him on tuesday before accident at school and diagnosrd growing pains i have been told since this was the sufe

15

sorry he had knee thigh and hip pain for 3 months

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Hello Jacqui, I can understand all what you say and do feel for you. My son is nearly 15 years old and last September he was finally diagnosed with SUFE (and by that stage it was quite bad). He had an operation to insert 2 pins and they were taken out in April this year. He was in hospital for nearly 5 weeks in September and his right let is now shorter so he walks with a bad limp, thats when he was walking, we are at the stage now where he is back on crutches because he is in so much pain and his hip clicks now. He is having a CT scan next week and from then that will determine what they are going to do, I think our consultant is also going to refer us to The Royal College of Orthopedics.

It's been a horrible time, of course for my son but also for all of us. My son doesn't want to go out on his crutches and so his social life and everything has been affected, no doubt your son is the same.

It would be good to keep in touch and give each other support!!

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hi did you mean royal national stanmore i think mr nejad is a star .

my son doesnt have a social life either i think they worry about trips falls and being knocked over as my son was originally

the leg lenght can be dealt with r n o h take our sons trainers and raise the sole on them if you are offered this black is best as white shows to much yes i would like to keep in touch it gets very depressing as a parent i feel i should have been more alert i know others feel like this to

we need a support group i am going to write to my local hospital and see

if i can drum up some supprt

i am from guildford surrey

look forward to hearing from you again

i hope all goes well with his scan

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Hi there, yes, I do mean the Royal National in Stanmore. I am pretty sure our consultant said he may refer him to Mr Nejad so hopefully he will.

We are from Essex, not far from Chelmsford. We've been up to A&E today as since our son's operation in April to have his screws removed his scar has not healed properly. We've taken him back and forward to our doctors and last week a nurse pulled a very long stitch out from his scar but last night I found another one poking out! That's why the scar cannot heal because the stitches are not disolving - so it's another course of anti-biotics! He does have insoles for his shows but as he has been back on crutches they are not really helping him.

Thanks for the good luck wishes with the scan - I will let you know how he gets on, I doubt we will hear anything straight away, we will probably have to wait for the appointment with the consultant which I think will be 2 weeks after the scan.

So have they said when your son will be able to have his hip replacement? Although we know it is major surgery we are all for it if it means that our son can be pain free and able to walk properly - do you feel the same? The sooner the better I think.

All the best to you and Jordan.

19

hi ,they have said jordan can have it any time as his hip so bad

even after valgus osteotamy mr nejad did .I just wish our local hospital

had refered him straight after accident .Jordan is in a great deal pain today and his knee is hurting as well so am keeping an eye on him

he got his new car two weeks ago as is now 17 my ex driving it for now

we found a car with seats at near to hip height helped mind you without

dla and mobility allowance we would have not been able to afford it

at stanmore they put new soles on bottom of shoes as this does away with leg length differance but he is still aware of people around him when out he gets embarresed other than that he is now a realy happy go lucky

person

i just cant believe we are not told about s u f e as our children approach 11 or 12

our world has changed so much sorry i am having a bad day today

20

Poor boy (I know he is 17 but he's still a boy (dont tell him that!) and your boy too), sounds like he has been through so much and to get better which hopefully they both will soon just takes so much, it's definately not a quick fix, it's a terrible thing seeing your child in pain and so limited as to what they can do. It does really take it's toll, I am always worring and just really concerned about his future and you're right, although thankfully it is very rare, there could at least be some information for parents when children reach 10 or 11 then if the signs were there people are more likely to realise something is wrong much earlier. Through no fault of our own they are suffering a lot more than they would have done if it was picked up early.

I know how you feel though you've been going through it a lot longer than us. sad