MY SONS JUST BEEN DIAGNOSED WITH SUFE AFTER MONTHS OF PAIN

Hello, I have read your experience and feel so very sorry for you and your son, I’m not sure if you have read other experiences on this website but you will see I have written in quite a few times. My son is also 15 and also has had a SUFE. He went for almost a year complaining of pain in his groin and we were also told it was growing pains. To cut a long story short in September of last year we were finally told what was wrong and that he needed surgery immediately. He has 2 pins put in last September and was in hospital on traction for just over 4 weeks. In April this year he had the pins removed because they had caused Avascular Necrosis (the pins had stopped the blood supply getting to the ball of the hip and therefore it started to die away). The development of Avascular Necrosis they told us was unfortunate as there is a 1 in 6 chance of that happening. He too has one leg shorter than the other and has very limited movement in his hip which is very painful. 4 weeks ago we had an appointment at Stanmore and they basically said that he has 2 options, one is to fuse his hip which would mean extremely limited movement, the only benefit would be that he shouldn’t have pain anymore and option 2 is to have a hip replacement. That is what my son has decided to do and we are going back to Stanmore next week with our decision. With a hip replacement they should get back most of his leg length. If there is any support I can give you I will, it’s a horrible time and had it been caught earlier, like your sons condition too then things may well have been different. Your experience is terrible – if you want to talk, let me know. All the best to you and your son

so sorry to read your sons experience my son is 17 he had quite a bad accident at school and the ball came clean out of socket like mjanes son we are going to ******** in two weeks jordan has decided he wants the hip replacement both boys are under mr **** he is fantastic i know its hard but there is help out there i hope you have put in for dla as you may need it with hospital visits ,the one thing we were told never feel a nuisance if your son is in any extra pain than normal dont hesitate to go to a&e he will be treated faster if you ever want to chat just let myself or mjane know so good luck

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thank you both for your replies, its nice to know i can talk to other mums going th rough the same thing, but i am shocked at both your sons having hip replacements at such a young age. And i am angry at the length of time it took to diagnose as now i have read a lot of info online about sufe i know early treatment is vital. I was also wondering about claiming DLA as it was mentioned to me by the nurses in the hospital. I hope both your sons operations go well and things improve as you have both been through so much, i will keep in contact on this site as it answers so many of my questions. my son is going for his 8 week post op review next week so i will see what happens then, thanks again for your support, donna

hi you can claim dla as the condition is :lifelong: we had a new car but it was too low for our son to get into we now have a mobility car wich my son is going to learn to drive good luck oh yes they pay for lessons as well

hi, my son kyle has a sufe this happened by turning to run, he had complained of an aching in his leg for a month before but being hes mum i thought this was growing pains, believe me the guilt i have felt since.

kyle was 12 when he had to be rushed to hospital they told me the shocking news and i couldnt believe this could just happen, they opperated and pinned both hips to repair the brake, he then was recovering then on going back for check they discovered that the pins had come loose on the left hip, so he had to go back for second op to replace the pins on that side, all was going well until recently we went back for check, where upon they now say he has developed avascular necrosis, sadly for kyle this has now rocked his world as well as ours.

so as any other mum you research and its been so good to find this site,they now plan that when we go back in 4 weeks they may do yet another opp to remove pins and do an mri scan, if anyone can give me any advice on how to cope with this id be very gratefull.

hi so sorry to hear of kyle experience my sons very simular we do feel guilty but i had jordan at doctors 2 days before complete slip and was told growing pains so dont blame yourself i have been there it wrecked my marriage your son needs u strong for him its a long journey

and as for kyle tell him there is light my son jordan gave up on life but turned it round by going to college to retake gcse as he did badly due to lack support from school he is now doing a media course he has been chosen to go to channel 4 soon to see behind the scenes as he wants to produce and direct that means another 3 years at college but jordan doesnt allow the condition to rule his life any more he wont see it now but there is a future

jordan also has one shorter leg and avascular necrosis he will be 18 in march he was 13 at time he getting new hip soon so u have me and mjane you can pm me any time good luck

hi thank you for your reply, im having trouble using this site at moment, its not letting me log in, kyle read what you said and he now knows hes not alone and their is hope,

he has to go back on the 22nd to see if it has died anyfurther so finggers crossed, as they dont know the time scale of this, does anyone?

hope to hear from you soon

and i dont know how to pm you !

can you help

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hi mjane chell and kyle i hope you are both ok ,just to let you know jordan has written a short film and it has been chosen by college to actualy be filmed

and their will be a black tie preview .kyle keep your chin up u will get through it and u are not on your own i hope you have good friends to support you good luck

mjane have you heard anything yet i am phoning monday as jordan worried about his 18th and having to go on adult ward how is all going with you both jordan has developed knee pain again worrying as you can understand hope you all have good weekend

chell do let us know how kyle gets on i am getting jordan to help me sort out facebook as every one in my family uses it i might as well

chel take a notebook with you i have the memory thing it goes in one ear out the other it all sounds beyond me :?

kyle good luck for the 22nd :wink: hope all goes well try and enjoy half term :wink:

hi jacqui,

hope you and your son are well, its great he is making a short film about his condition, it will be great for him to tell others out there.

kyle doing fine being normal boy at the mo away from hospitals, its ony when we go back it asorbs his life again and reality hits him and us like a bad dream, im lucky i do have the support really as i would of gone mad, kyle has an older brother who 18 and hes nan my mum who just down the road from us, and in fortunate in my friends from work have been great to him and me.

im on facebook and would like to join your forum if you tell me how?

still dont know how to personal message you, lol me and computers nightmare.

i will take some notes as your right when you get home you think what did he say? at the mo having probs with getting kyle dissability they keep refusing oh well chin up xxxx

hi jacqui,

hope you and your son are well, its great he is making a short film about his condition, it will be great for him to tell others out there.

kyle doing fine being normal boy at the mo away from hospitals, its ony when we go back it asorbs his life again and reality hits him and us like a bad dream, im lucky i do have the support really as i would of gone mad, kyle has an older brother who 18 and hes nan my mum who just down the road from us, and in fortunate in my friends from work have been great to him and me.

im on facebook and would like to join your forum if you tell me how?

still dont know how to personal message you, lol me and computers nightmare.

i will take some notes as your right when you get home you think what did he say? at the mo having probs with getting kyle dissability they keep refusing oh well chin up xxxx

Hello all, my name is Joanna my story is listed on this website somewhere! My story is also vey similar to your sons's, where my SUFE also got mistreated and went undiscoverd for 18months too..

This happened when i was 12, I am now 18 and can say that everything is pretty grand! I used to be a dancer/gymnast before my sufe and was told after my op that i would no longer be able to do alot of the things i used to.. However, i have just graduated from a performing arts course with a tripple distinction! and still dance and do gymnastics like before, much to my mums dislike as it worries her all the time lol!

I just wanted to let you no, that i no how it feels what your going through! and although its hard at 1st, theres light at the end of the tunnel as they say! and everything gets better in time! Listen your own body and now your limits!

If you ever wana chat, would be great to hear from someoen going through the same thing!

Take car & best wishes to a very speedy recovery! xxx

I don't know if any of you are still following this thread...  

My son, now 12 had a chronic SUFE a year ago, after 2 unsuccessful visits to the GP.  We were on holiday when it happened and the surgeon in North Staffs has been brilliant.  We were extremely worried about the femoral head having a complete collapse due to the avascular necrosis, and the surgeon used some very avant guarde treatment, including an 'external fixator' which was screwed into the pelvis and thigh, which removed the weight of the body from the hip whilst it was healing, and my son has also had bisphosphonate treatment which had previously only been trialled in a very small number of children in Sydney!  He is still on crutches/wheelchair after over a year, but are hoping that he will be able to put more weight on his hip soon.  The external fixator was really NAFF, and we had to change the dressings on it every day or so, and he really did not do that much for the 4 months it was on, and the bisphosphonates made him poorly the first time he had them.  We feel lucky to have had such good care.  We know that he will have to go through leg shortening of his good leg in the next few years and a hip replacement when he is older, but just have all of our fingers and toes crossed that it all goes in the right direction for now.  Was thinking of setting up a small SUFE support group, as my son is desperate to meet other children that this has happened to, and says that he hasn't met any other children on crutches like him.  The only charity I know of at the moment that offers some support is STEPS, but they really only have much younger children who go to events and not those in the age group that a SUFE can occur. My details are with STEPS if anyone wants to get in touch that way.  

Hi, my name is Jo and I am here looking for advice for my daughter Becky who as a child of 11 (about 1988) had the exact same problems as your son. When I saw your message I felt I had to make contact with you.

My Becky only wanted one thing for her eleventh birthday, rollerblades!!! So the family clubbed together and bought a pair for £100, it was a lot of money then.

She went to a roller disco for her birthday party and her world was perfect; that was in the October. By November she started to complain about pain in her left knee, I assumed it was over use of her boots so I put a limit on usage and I did the usual of pain relief, bandage for support and spray on Reljex.

By the end of the month she was in constant pain, crying and walking badly. I went to the doctors he moved her knee around then said 'growing pains' he advised rest and come back if there was no change in a couple of weeks.

This appointment was in early December, this time Becky was really suffering and we lived in a first floor flat; I bought a z-bed and she slept at my mother’s at weekends. The doctor again examined her knee and could not find anything, but he ordered an x-ray he could see how upset and the pain she was in.

As an afterthought when filling out the x-ray form he said 'let’s get her hip done as well it could be referred pain' I had to call the hospital for a date to get the x-ray, and as it was near Christmas I had to take one in between that week and the New Year.

Becky said they kept saying 'just one more' and they took lots of them, I had to wait outside and I put it down to her maybe moving and not able to stay still in one place because of the pain. I even joked telling her to smile for the camera.

It was a week later my GP called me at work and said where was Rebecca now, by this time schools had gone back so I said at school. He then said to me he was going to give me instructions that I had to follow; I needed to get to her and prevent her from putting her foot to the ground.

He did try and tell me what the problem was but he said to go and get her and bring her to him. I must say I was shaking and rushed off to get her. By the time I had gone the five minutes to the school I was crying, fortunately I was a Governor so they knew me and they went to get Becky giving me time to compose myself. 

Staff members helped to get her in the car making sure she did not put her foot down. The Doctor was so apologetic when he said what she had wrong and he felt he should have noticed it and acted upon it. He said that he had got us an appointment for the next day with the best orthopaedic ‘hip’ man in the South of England and that he specialised in this condition and working with children.

He also said that the surgeon had told him that most GP’s only ever see the condition maybe twice in their career. What he said was he just wanted to get the second one over and done with!!

We went to the hospital the next day and saw a lovely surgeon; he explained that epiphysis had slipped badly and at the moment it was hanging on by but if it went it would shatter he pelvis. He then showed me the x-ray, it was really frightening to see; he explained that the pear shaped pointed end of the epiphysis had pushed all the way into her groin direction, and how it was still holding there I have no idea. He said she is one very lucky girl.

He gave me two options, 1, take her home for three days returning on Sunday with crutches and no foot to the floor or 2 go on the ward and wait until the operation that would happen on the Monday.

I took her home with me, family and friends had an opportunity to see her and we were so careful. I tried to keep it all calm and we borrowed a wheelchair and we went shopping for books, nighties that sort of thing. She had her operation and 2 weeks later went in for a prophylactic pinning on her right hip. The pins were only in for almost 2 years, when she was discharged I was told that she only had 50% rotation on her left hip and 75% on her right; he said she would have to possibly have to have one or both hips replaced at about 40 and that he also said there might be complications with her hips if Becky had children.

Now Becky is just 36 in October; she had her first daughter Chianna in 2001 which did not present any problems. Not long afterwards I noticed she was walking ‘wrong’ she said she was not in pain but to me her left foot was shorter making her right foot was being dragging along. Looking at her shoes was a good indication there was a problem.

In 2011 Becky had Angelica her second daughter, still fine. In August 2012 Serenity arrived, all no problems with pregnancy and delivery; but I could tell her walking had got much worse, especially when she was tired she dragged it more. After 2012 she did start to complain about her hip hurting her.

Then in April this year she had girl boy twins, Harmony and Aragorn, she moved from a flat to a two level house with lots of stairs and eventually gave in to my trying to get herself sorted and went for an x-ray. The result is she has been told her hip looks like an old lady with osteoarthritis and is waiting for a referral to see a surgeon.

No doubt the babies have not helped, but I am not surprised, in a way I’m relieved as it was predicted, just not this soon.

I will see if I can find any advice and support for Becky as she is saying she might wait until the twins are another year older; my answer is not printable!!!

What has happened to your son disturbs me as it seems you and other families are still not being diagnosed correctly or soon enough, I never believed in growing pains, it’s just something that can explain away almost everything!!!

I wish you and your son a speedy recovery, you sound really focused on getting him right, but as a young man he has had to make some tough choices.

Best wishes,

Jo