My name is Joanna Kindred i am 13 years old,I had SUFE d...

Hi Joanna, I am the mother of Tasmine Castle aged 11 who was diagnosed yesterday 10/2/05 with SUFE after 6 months backwards and forwards to GP/Hospital for physio/X rays of painful knee and ultrasound of thigh muscle. Tasmine was diagnosed with muscle strain/maybe ligament tear by GP and has slowly deteriorated since last Summer 2004. After finally being referred by our GP, Tasmine was diagnosed by Mr Hope, Paediatric consultant and is now being referred to Royal National Orthopedic Hospital for surgery within the next 2 weeks. Like you my daughter has always been active playing netball in the school team, swimming with a local Squad weekly and is now basically immobilised. I would really like to know what to expect over the coming weeks with regards to the surgery and after care. Take care of yourself, Sam Castle (worried mum of Tasmine Castle, aged 11 years 2 months)

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Hello Joanna and Sam

In 1984 when I was 10 I was eventually diagnosed with SUFE after much deliberation. My symptons started with a pain in my left knee followed shortly by a limp. My GP was very thorough but I went through the motions of having X-rays ( on my knee, as obviously I had deferred pain ) and visiting physiotherapists, one of whom said my mother was neurotic and the pain was in my head !!!. The limp steadily worsened and I remember collapsing at school, which in hindsight was the best thing to happen as I was rushed to hospital and then diagnosed with SUFE. My left hip has been pinned with seven pins and the right one with three as a precaution. I recovered quite well, although I was on crutches for a while and used to tire easily if I had to walk a long distance. I too used to do a lot of gymnastics and dancing, but I gave up the gymnastics afterwards.

Now 20 years on I am absolutly fine. I can be prone to weight gain and I find it a bit uncomfortable if I get a bit podgy on the old hips but it gives me an insentive to go on a diet (most of the time anyway!!!). The only sport I avoid is skiing and the only reason for that is fear of falling over. You will be absolutly fine as I have been I am sure. Just take one day at a time. This time next year I promise you will feel differently.

Take care Joanna

P.S I gave my mother premature grey hairs Sam but I can assure you I recovered quicker than she did. As a mother myself now I can sympathise with you. I was very worried about giving birth but I had no problems at all apart from the normal!! pain. I hope your daughter recovers quickly.

I hope I may have helped.

Claire Marsay (nearly 30 !!! )

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Thank you so much for replying i arrived at royal national hospital on 24/3/04 and had my operation on 25/03/04 i was lucky enough to have the world renowned mr nejad as my surgeon and he performed a miracle on me i had both hips pinned and thigh bone re-aligned in a 3hr op, i was in hosp for 2 weeks nearly and on crutches for 8 weeks after this i could actually walk properley for the fist time in 11 months without a limp. i have had problems with backache and further problem leading on to a condition of my knees called osgood schlatters disease, but i have been seeing a chiropractor regularly who is helping me to restore my spine back to normal .dont worry about your sports you will soon be back i used to do alot of sport gymnastics and dance but just take a day at a time and you will do it. Keep the good spirits high and determination going as we are very rare. I can really understand what you have been threw as i was battaling with hospitials! you have come this far no so dont give up ! it has been great to now that other people have this condition, and i would love to stay in contact with you and maybe one day meet you, keep going strong joanna.x

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Hi Clare/Joanna,

Thank you for posting your responses regarding SUFE. My daughter has now had her operation at RNOH under the great care of Mr Nejad and team. Tasmine had an 80% slip and had a femoral osteotomy with single pin. She is now on crutches and was discharged on 7/3/05, 11 days after her operation. She is currently having hydrotherapy weekly at our local hospital and is doing really well. We are now looking forward to our 1st outpatients appointment at RNOH and for Tasmine to walk normally for the first time in about 10 months without pain. Tasmine longs to get back to her sport and is finding the restricted movement a bit depressing. Hopefully by the summer we can enjoy life again. If you want to get in touch and maybe meet up lets do so. We are from Hertfordshire. Take care all of you, best wishes Sam Castle (relieved mum of Tasmine)

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Hi Jo

Please don't worry about your hips being big. I have always been prone to weight gain, and what I find, is that if I put on to much weight around the hip area, they ache more than usual.

As for your dancing, you should see me bopping around my local nightclub on a saturday night and you would never know my condition. Just take things very slowly to start with and you will be right as rain. If you want to keep in touch or need any advice then I am only an e-mail away, and yes I do live in this country, in North Yorkshire.

Take Care

Claire xx

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Hi everyone!!!

Tasmine, It was a year ago on the 25th March this year that i had my operation, and now i am back at dancing and doing p.e, it is a long process and you have to keep strong dont worry your be back to all the things you love. I am due to see mr.Nejad on the 18th april for an out patients appointment , like you i felt deppressed that i couldnt do the things i wanted, you have to keep your self busy so it doesnt effect you to much, when i was on crutches my mum hired a wheelchair for a day at Lakeside a shopping centre near were i live and i went shopping. Dont worry about how people look at you , they dont no you and dont no what you have been through. I would love to meet you, keep smiling jo.x

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hi everyone i am joanna's mum jan, its been great to read your comments and getting replies really gave joanna a real boost on one of her down days. she has done so well but it has been a worrying ,stressful two years in all since she first had the injury. Its been a year since her op and she is getting back to her dancing but not as much as before. she is always positive and always helping others and not moaning herself even though she still has her aches and pains, thank you and keep in touch, jan.

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Hi Jan, Joanna, Clare and everyone else affected by SUFE. Tasmine had her outpatients appointment on 25/4/05 and Mr Nejad was extremely pleased with her recovery after only 8 weeks. Tasmine can now lift her leg up at a right angle to her body and also out to the side with no pain. Before the operation Tasmine also had about a 4cm leg length difference but that has now been reduced to less than 1cm. Tasmine had another Xray and it showed that the Osteotomy had healed but also showed the Femur had thinned due to lack of weight bearing. Tasmine can now walk full weight bearing with 2 crutches and will eventually after more strengthening physio lose them both. Tasmine is so happy and pleased with herself. Mr Nejad has said that she can now go swimming and also ride her bike. No contact sports are allowed yet though!! We have another appointment for 4 months time back at RNOH. If any of you would like to meet up, how would we go about it. Would we have to leave our email addresses with this website?? It is really great to speak to patients are parents who have experienced the wrath of SUFE. Take care all of you, Sam (Tasmines mum) & a very happy Tasmine XXXX

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Hi everyone sorry it has been so long!

I am so glad to hear that you are trainning to be a dance teacher!!! GOOD LUCK, I started dancing when i was 6 and am now 14. Im back at dancing now and love being there but im not doing as much as i would like to. A used to do Gymnastics, ballet, tap,modern,jazz. But now am only doing ballet tap and modern. My dancing school Showbiz Studios are doing a show ( we do one every year)in july the thing is they are using dances from the last show so obvisloy im not in much im only in two dances. I often get very upset with myself for not being able to do certain things. In the opening for our show we have to ripple up from the floor, sometimes i can do it and sometimes i cant , i often get annoyed that i cant do the things i used to, at dancing i used to be very flexable doing splits and bridges, touching my feet to my head but now i cant do any of it did you have the same problems? are you more flexable now?

I wish you all the best of luck in your choosen career. You have really helped me see that i can do it. At one point i thought about giving it up but then new that giving in was not the answer, today i was filling quite down but you hav made me fill loads better THANK YOU SO MUCH!

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Hello everyone,

Just to let you all know that Colette went to the hospital for her six monthly check up and excellent news, she is now on a 12 month review! Such good news. Everyone was so pleased with Colettes progress, least of all Colette herself - afterall shes the ones whose done all the hard work. They did advise her not to go trampolening but not necessarily because of her hip but because of the large number of accidents involved with them. The only thing they have told us is to keep a close eye on Colettes other leg as until she has stopped growing there is still a chance that she could need that hip pinning. Fingers crossed however that at the moment she is showing no signs of this at all.

Good luck and best wishes to everyone

Take Care

from Colette and her mum Heather xx

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Hya everyone !

Ive just read your stories and thought i would post mine !

Im now 23 and at the age of 12 i suffered from a SUFE. I hade been getting pains in my right leg for 3 months but thought that was down to doing extra dance lessons ! Then one day i tripped and then couldnt stand or move - i ended up going straight to the hospital was put into traciton and had surgery later that night. I had 3 pins placed im my right hip. I was kept in hospital for a week and was on Crutches non-weight bearing for 3MONTHS !!! It was horrid !!

I really thought my dream of a career in dance was over (I know how you feel).

I recieved no Physiotherapy or help to start walking after the 3months.

BUT - I am currently training to be a dance teacher (mainly working in ballet and theatre dance) so Joanna - you can do it !

I still find my hip has 'off days' when i find it really hard to walk and carry on - but if i rest it then im ok !

I dance everyday from work, all weekends and am involved im numerous shows and just want to let you know theres no reason (although im sure Dr wouldnt agree !!!!!) why this has to have a limit you in any way!

Just be careful and listen to your body !

xx

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Hya again !

Sorry i forgot to put my name with the last post im Claire !!

Glad i could help you ! I can understand how you feel about not being able to do things that you could before ! Even now i still cant turn my leg in (during modern dance !!)however, if you decide to do exams you can still get top marks (so long as your examiner is aware) !

Your flexibility will come back in time but it might not be the quite same as before - which isnt a bad thing it makes your dancing unique and you should feel very proud for getting back into dance !

I totally sympathise with the floor work - i havo soo much trouble ! Especially with sitting in attitude and rolling around !! I have a great teracher though who sets choreography around me !!

Just be careful (know your limits) and dont be afraid of stopping or not doing something !!

Im training at my local dance school so they know all about my problems which helps !

Im so pleased your feeling better !

My mum was so pleased when i started back dancing - she makes all my costumes and really missed it the year i couldnt do our show!!! hehe !!

Keep smiling

Claire

xx

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Hi clare,

Its Jan, Joanna`s mum, just wanted to thank you so much for using this website to put your notes and advice on. For Joanna to hear from another DANCER with this condition, was really a boost not only to her but to me too. Joanna had to miss out on her dancing schools last show, as she was still recovering from the op, next week she is in this years show for three nights! She is not doing as much as she used to, but at least she is managing to do tap and ballet, and modern. Gymnastics has had to stop, but on her surgeons suggestion we have taken up Pilates body conditioning and swimming. Unfortunately, this week she wanted to go on her friends birthday trip to the ice skating rink! but I couldn`t risk it as we go on holiday just after. So felt the neurotic worried mum again, which I`m sure all you mums can understand. Continue to keep in touch everyone, and take care of yourselves. jan x

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Hi Jan !

Anything i can do to help either of you just say !

I understand how frustrating and worrying it can be for you both and i think my mum can relate with your feelings well !!

Good luck in your dance show Joanna - im sure you will be great just make sure you enjoy yourself you have worked so hard to be where you are today !!

Where abouts is your show on at ?

Claire

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Hey everyone!!!!! Well done Colette with all your determination, all the hard work pays of in the end. Keep your head high. I just thought i would share with you , that im finding my legs are getting alot more back to normal, im doing alot of things 12 months ago i wouldnt have even dreamed to do again. I have realised that things can only get better, and this is only the beginning of a new me. Take care Joanna .x.x

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