My sons SUFE operation, walking within 2 hours ?

My son had both hips pinned, they were not bad only just slipping lucky it was caught in time after over a year of doctors telling me it was growing pains??? I just hope him walking so soon is a good thing not a bad thing ! One hip was worse than the other but I decid to have them both done as it was a 30% chance the other one would slip more after the first one being done, he was meant to stay over night but he was up and walking after 2 hours so I thought best to have him at home with me where I could care for him 24/7. I'm in London , England so maybe things are different in different countries?

I have his 3 month follow up in June and I will hopefully be seeing his surgeon as the appointments we have had so far have been with the consultant team, they have been useless!! I have demanded that I see a surgeon this time.

I'm just shocked but the difference in treatment, my son seems to be the only one in this forum that was up in 2 hours after surgery?? Not sure if I should be worried ?? Or maybe I was very lucky and caught it before it was very serious ?

Thank you for your reply

Hi Gerry

Sorry to hear about your treatment, we are also in the UK near Birmingham, and have had excellent care through the Royal Orthopaedic Hospital where they have consultants who specialise in SUFE.  If you check out facebook page SUFE Slipped Upper Femoral (Capital) Epiphysis and send in a friend request then please carry on asking more questions there.

Kind regards

Hi Jaqs

Sorry to hear about your son, we are only 2 yrs 9 months into crutches/wheelchair until a possible operation in Switzerland this year, to re-shape femoral head and triple pelvic osteotomy or he remains in wheelchair until he is 18 - same as your son, at the worst end of the scale.  You mentioned that it is 14 years since it happened to your son, so he's had his hip replacement has he?  I just wondered if he is having problems with the replacement? Would you be interested in joining our facebook page? SUFE Slipped Upper Femoral (Capital) Epiphysis.  Kind regards

It's seems my son is very lucky, hope it's nothing serious with your son. I am so happy and thankful that my son is on the road to recovery and that he continues to get stronger every day. It's very early days for us and it seems you and many others have had a very bad time with the development of avascular necrosis, it was discussed with us before surgery but we were told it was a very 'low chance' of this happening and that he had more chance on a total slip in both hips than for this to happen , wishing your son well and all the luck.

Hi yes a new hip at 18 years and until last Saturday all was fine no pain walking fine but now we need to go back to Stanmore because of sudden onset of pain across both hips and both thighs

Oh dear, so sorry to hear this, I do hope that you get to the root of the problem soon.  Please do keep me informed and join the facebook page SUFE Slipped Upper Femoral (Capital) Epiphysis or there is a children's charity called STEPS and my details are with them.  It is such a terrible thing to have happen to our children, and any information that can be shared may be helpful to this small community of sufferers and their families.

Hi, you said your son had a hip replacement at 18 and its been good.

I had a bad SCFE when I was 11 and I will be 18 in a few days.

I have had the first surgery and had two pins put in. Almost a year later I had to have another one put in. About 3 years ago I had the pins taken out. A year or so later I had my bone carved and turned to try and make it as normal as possible and try to give me more mobility with it. I was really limited with the mobility. I stayed off of my leg for months. Not using your leg for months sucks for the muscle.

In September 2015, 17th, I had a surgery to turn my bone a little more and put a medal plate and two screws put in. Again I was on crutches for a bit. I went to my checkups and was told after a while of 50% weight bearing with crutches that I could put all my weight and walk. I still needed to build muscle back though. But after a while I didn't need the crutches. I noticed that I could do more stuff and move a little better. Though I still had a limp (had it since the first surgery) and I still couldn't play sports or run. But I could walk a bit better, sit down and stand up more normal, it was a bit easier to get in and out of cars, get up and off the ground easier.

So I thought things were going good. Then I go for a check up and they say the pin broke. That it was a bad screw and they didn't know. So I had to have the surgery done again. This time they sent me to another hospital afterwards so I could do physical therapy. It helped some. I was on crutches again for a while. I get off crutches and everything is going good. I'm off for a few months until the doctors say the bone isn't growing back how they want. So August 2016, 25th I had a bone marrow transplant from my right bone to put into my left hip (my left hip is the one with SCFE). It went good so i went home the next day. I'm non weight baring for 6 weeks or until the doctor says.

So its soon to be almost two years since I've not had to use crutches.

Honestly I would like to have a hip replacement. I wish I didn't. But my hip is just not good. It's been operated on a lot and nothing ever works. I always have to get another surgery done and not be able to walk. It just hurts. And its really holding me back. I dont go out at all anymore. I haven't even been into WalMart for more than a year. My anxiety is horrible it has been for 4 years and I've been really depressed. And my leg is a huge part of it. Probably the main part. I've gained a lot of weight from not being able to workout. I'm either on crutches or ill work out for one day and its hard to move for the next week or so. I was supposed to be graduating a year early but because of all the surgeries I'm graduating a year late. I dont even have my permit to drive. I've just missed out on my teen years because of my hip.

I want to know what your son thinks of the hip replacement, the pros and cons, what hr can do now, hoe it feels, how long will it last, does he workout.

My name is Alyssa.

Hi Alyssa

So sorry to hear about all you have been through. 

So my son is nearly 14, and he had his SUFE at nearly 11.  He has been on crutches for over 3 years.  We are just deciding what surgery to do, as he does not have full movement in his leg and has a big problem with muscles - like yourself, so he cannot walk as has lack of muscle and also part of the femoral head is blocking the movement. 

Are you on facebook?  I started a facebook page SUFE Slipped Upper Femoral (Capital) epiphysis to share ideas etc about this hip condition.  Hope you will join us.

It sounds as though you could do with having a hip replacement, so that you can get moving again, start swimming and to help with weight management as the more you weigh the harder it gets (I know, I suffered with weight gain).

Do not give up, and I would push your othopaedic consultant to have a hip replacement so that you can get more mobile and loose weight and you can then start to work and will feel better in yourself and less depressed.  

Having an early hip replacement means that in older life you will be less mobile as you can only have a small number of replacements, but surely you want to enjoy life while you are younger?  Also, you want to get those muscles working again while you can, or they will waste away and then there will be insufficient muscles to make the hip repacement work well if you wait until you are older.

Ruth

Hi there

This is wonderful that your GP recognised the symptoms and referred you to the hospital straight away.  If you've had a few SUFE's in your Rugby club, then parents and coaches are hopefully well aware of the symptoms and know to have it treated asap.  The long term issues which occur are down to the children not being referred soon enough, and once the damage done, it is irrepairable.  

TBH actually the GP had a fair idea but the Xray took weeks to come back. it was sheer luck that as a senior professionally licensed rugby coach i stood him down from full contact rugby till i was sure. Accordingly the profile of kids that are most likely to get this is "large" kids, male, going through a growth spurt and puberty and also probably of  particular ethnic backgrounds...so rugby is right in the front line here.  

Mmm, that is interesting, another lady has been in touch with me through our SUFE facebook page.  Her 15 year old son was a rugby player and his SUFE was undiagnosed,  after only 2 weeks, his SUFE went to a chronic state, so he is in the same boat as my son - crutches until a hip replacement at 18.  I wonder if some awareness of the condition could be promoted with rugby/sports coaches (if not already done so) - whilst I realise it is not in their re-mit as a coach, It would be great to increase the awareness of this chronic condition to as many sporting professionals as possible, to try and avoid such a disastrous outcome in  young children (mine was only 10).  Let me know what you think.  All the best.

Awareness is not promoted via the RFU. i believe it is worth approaching them. Bear in mind the RFU also run sports Physio qualifications and courses. The RFU has been very active in recent times with thier concussion awareness courses so there is some precedent here. I have just had a rummage to try and locate a contact for you but no luck. probably best to search through the RFU Rugby England website..goodluck.

Hi

This is really interesting as my son had just started playing rugby at school .

. Jacqui

i believe IF there is a relationship between a SUFE and rugby it is not the nature of the sport but rather rugby attracts larger kids who are more susceptable. The kids in rugby that i know who have had this are on the extreme edge of what there skeletal frame can handle . They have all had growth forecasts of 6ft 8 plus and been heavy. Not all rugby players get this at all. Indeed many kids get this who dont play rugby. But the larger kids at the edge of extreme skeletal growth who are also going through puberty and a growth spurt are more susceptable. To turn this on its head. If i had not been a rugby coach and working within this enviroment i may have encouraged my son to play sport and his hip may of totally collapsed.

b

Hi, totally agree with you on this, I don't think (nor do the experts) that there is anything to do with sports/Rugby, but it has something to do with the build of the child and their stage of puberty/growth spurt.  But also, this can happen to tall/skinny boys, as well as girls, but boys seem to be more prone to the condition than girls.  As I say, if more sports coaches were given some advice on this, (as GP's are still failing many kids when it comes to recognising the symptoms), then it would save the handful per year which fall through the net.

Many thanks, have just seen your reply - will think on this.

i sometines think that its possible to screen kids at an early age by undertaking a growth forecast and looking for extreme growth or looking for kids over say 95% growth centile .... just a thought from a layman.

b

I myself think as in case of say meningitis we should be given warning signs ie knee hip thigh pain my son had a growth spurt but was also very large shoulders at 13 we were buying 40-42 inch chest for him butwas not overweight. Had we known the signs my son would not have lost teenage years in a wheelchair I do get angry and now may be other hi going

Great news , I was beginning to think I the only one who's child is making progress after this operation !! Glad things are going well, We have a 3 month check up next week and hopefully he can't start doing some exercise. Wishing you lots of luck for the future

Blooming fantastic..... may i respectfully suggest that a lot of care is given to help and consider his rehabilitation . Time is a great healer. getting back into things to early can cause lots of secondary issues back, kness, ankles etc etc as well as emotional stuff .... but glad it all looks good.

We have just been given the all clear to go back to sports and football!!! Totally amazed I am though very worried since it's only 3 months since his hips were both pinned ! He is usually pain free has some healing twinges now and then but I know my instincts were right and that pushing for an emergency appointment probably save my son( even if he don't see it that way!) he can do everything he did before , running, kicking just no jumping for 3 months. Hope everything works out for you all x