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Slipped Femur Capital Ephyphisis-30 yrs later

Posted , 4 users are following.

JEEPGIRLY69
JEEPGIRLY69

I was dianosed with Scfe when I was 10.. had surgery, four pins placed and removed one year later.. At 42, i am having severe pain, movement problems, etc.. has anyone had further procedures after their initial surgery and how did it go/what was the procedure. 

I do not want to have a hip replacement and am wondering if there are other options out there, what other peoples experience were

0 likes, 10 replies

10 Replies

  • trolly-dolly747
    trolly-dolly747 JEEPGIRLY69

    Posted

    Hi

    My son is 12 and had an acute SUFE 18 months ago, he is still on crutches/wheelchair, but has Avascular Necrosis, and his hip is very damaged and we are hoping that by taking the weight off his hip through partial weight bearing (and some other treatements including bisphosphonates), to save his hip, that he will not need a replacement until he is in his 20's or 30's as he is too young and has too much growing to do to have a replacement at such a young age.  

    My son's consultant has already told us that he will have to have a hip replacement when he is older, so I guess that this could be the case with yourself, I don't think that long term things have moved on very much since you had your SUFE, the prognosis is just not good. Have you been for any X-ray?    From what I can gather from the consultant - once the hip is damaged through a SUFE (even a small slip) that hip replacement is inevitable at some point, I think it is a case of how long can you manage for.  Sorry to not be very positive, but of course everyone is different, and you could visit a consultant and be told that you do not need a total replacement. 

    Are you in the UK or US?

     

  • laura04216
    laura04216 JEEPGIRLY69

    Posted

    hi ladies, i have had 2 SUFE both left and right hip, had both hips pinned, removed, i didnt have any bother but for the last few years ive been getting alot of pain daily. I am now 26, it really affects my day to day life. i had a hip arthroscopy 3 years ago with some relief. I have since had 2 lots of x-ray guided injections with relief of up to 8 weeks. I have had numerous cortisone injections but nothing seems to work. I cant walk for long periods of time and this time round its effecting me driving, all this is in the left leg where the slipp ws left for a period of 12 months without being treated. My right occasionally aches in cold weather but I dont have any other side effects.

    The left hip is deformed the femoral head is shaped like an egg and catches against the joint itself.

    I know there isnt much information around as it is very uncommon but looking out for some hope really.

    The surgeons wont give me a hip replacement because of how long they last and are trying to preserve my natural hip.

    any tips much appreciated.

    laura

    • trolly-dolly747
      trolly-dolly747 laura04216

      Posted

      Hi Laura

      Are you in the UK?  

      All I know is that they will only carry out a hip replacement as a last resort due to the length of time that they last. The consultant who operated on my son (in his 50's) also had a similar condition as a child and he is in pain with his hip, and needs a replacement, but he just carries on for as long as possible with his own hip (says a lot for early hip replacements doesn't it?!!)

      I think that over the next few years a good amount of progress will be made with hip replacements.  There was something on the news the other day, that hips will be 'made to measure' soon, so that they will mould to the socket shape, which may make them last longer I guess.   If you want to chat further, I can be contacted through the STEPS UK charity for Lower Limb Disorders.  If you e-mail them, they will give you my contact details.  I think I will start a website or blog for SUFE as there is very little specialist information out there, and often people want to just chat to those with a similar experience, find out what progress has been made - if any.

      Best wishes

      Ruth

    • laura04216
      laura04216 trolly-dolly747

      Posted

      Hi Ruth,

      yes Im in the Uk, I have been told that i wont rerecieve a hip rreplacement as i still much to young. I had a severe slip on the left hand side which has caused me alot of damage i went to a chiropractor yesterday as a ddesperate resort he tells me my left leg is so deformed it has caused my leg to me 1.5 inches longer!!! i go back to my doctors constantly and he offered me more drugs such as morphine not a solution to my problem!

      I would be interested in starting a group or blog with you ruth I would like to make people more aware, I have the personal experience as been suffering with this disease for 16 years, i am also a community nurse and I jave just done a detailed dissertation as part of my university course where a doctor urged me to get published. I feel quite passionate about sufe as it seems there is no awarness and young children are left undiagnosed and im living proof they dont no what to do with the hips in adult life!

      i will private message you my email

      laura

    • yvonneb63
      yvonneb63 laura04216

      Posted

      Hi Laura please include me in the groupmplease im in the same position and in glasgow
    • trolly-dolly747
      trolly-dolly747 yvonneb63

      Posted

      Hi

      We haven't started anything yet!! - But there is a facebook page I've started called: SUFE Slipped Upper Femoral (Capital) Epiphysis.  We have an appointment for my son in June, so I'm going to ask the consultant what his recommendations are for people like yourself who are suffering, but too young for a hip replacement, see if there are any improvements to the hip resurfacing/what pioneering work is being done on hips at the moment.  If you 'd like to get in touch with me direct, you can e-mail STEPS children's charity and either they will give you my contact details or I can give you a ring, hope this helps, will keep you posted.  Ruth

    • yvonneb63
      yvonneb63 trolly-dolly747

      Posted

      Hi Ruth

      i will certainly join your facebook page mines was mis-diagnosed as a child and when it did get diagnosed I mond the doctor giving my mum hell ansshe had taken me to odctor after doctor and was told it was growing pains and im going back to the 70's where i got traction for 3 months then the op then nothing so hopefully for your son things have moved along but i now have osteo arthrtis and apperently because of the pins that they put in it is dangerous to do a hip replacement due to the fact it can split the femur which would cause the leg to be unuseable, and as a mother you will be worried well hopefully things are more advanced .

      anyhelp you need with a group or charity please do not hesitate to ask

      Yvonne

  • yvonneb63
    yvonneb63 JEEPGIRLY69

    Posted

    Hi Jeepgirly69 I had same op only had pins in at 12 and got them out when i was 16 my hip was undiagnosed for 4 years and had a severe limp now i have severe osteo arthritis put on a lot of weight and surgeon says i need hip replacement im too young but because the pins were in as long even years on when they replace the joint there is a igh chance of the bone splitting so doesnt want to replace it so i have just had my medication reviewed which im now on morphine i would love an alternative alos but apperently these are the choices wonderful so please let me know if you find anything
  • laura04216
    laura04216 JEEPGIRLY69

    Posted

    hi ladies bit of an update, i had my appointment with the surgeon, he said my hip is so sevrely deformed he will have to do a hip replacement, where i have had my pins out previous for some reason the bone hasnf healed and it has left holes in my left hip. he said he would ideally like to leave it 5 years or so but it is so damaged it will just get worse.

    i also have had buritis which is where the hip collects and hold inflammatory fluid! this was very very painfull!

    so i am now awaiting my hip rereplacement still taking strong pain killers daily and i am noticing my range of movements is decreasing quite quickly and i cant walk or stand for long periods.

    I will hear 2 weeks before the op and will need about 12 weeks off work, veen speaking with physio and apprently younger ppl are classed more at risk of dislocation so i will have to be mindful of that and rest.

    Surgeon has told me i will need another replacment im just hoping technology gets better etc as the years go by,

    i just cant wait to live a nornal pain free life!

    i will join the facebook group

    laura xxx

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