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1 year check up scare

Posted , 10 users are following.

sarah1996
sarah1996

Hi guys, its been a while since iv been here so ill do a background thing first smile

Background: Im Sarah, Im 21 and was born with congenital hip dysplasia. I had my first surgery at 1 year old, and have gone on to have 14 in total. When I was 7 years old I developed avascula necrosis so for 13 years my hip had been dead. I had 6cm leg length discrepency so for nearly all my life the right side of my body took my full body weight. I am living in serious chronic pain, every second of every day is agony for me but im still plodding on to the best of my ability

I had my total hip replacement and reconstruction on the 11th April 2016, 2 months after my 20th birthday. The surgery took 8 hours and had a high failure rate (ill insert photos below to show why). Since the surgery I have been diognosed with osteoarthritis of the right knee, joint hypermobility syndrome (in 11 weeks i have had 66 dislocation/sublaxes of the knee), inflammatory gum disease caused by the OA and am about to get tested for diabetes due to something coming up in a recent eye test that worried the optician.

Since my THR I have found that things with the operated hip have only become worse. The hip constently tries to sublaxe its self (a sublaxeis when the joint dislocates but then puts its self back in the joint, double the pain in seconds), I still have 0 internal rotation and my external rotation is harder than ever, I fear from mulitple surgeries that my muscles will never be the same. It has taken me a full year to be able to lift the affected leg off the bed 4cm in a lying position. I still cannot lift leg from a sitting position. And theres so much more but I wont bore you 

So on Tuesday I went for my first year check up. I expected to go get xrays, be told everything was fine ( mr surgeon refuses to listen to my protests and is quite an unfair man) and leave. Instead I got xrays, went in to see the DR (it wasnt my usual doctor that day) I told him all my worries, he did some movement tests then suddenly vanished. When he came back he said he had spoken to my Dr and they had decided they were going to do some tests. I got a blood test done and am waiting to have a CT done. He said, in his words "we are looking for all the nasty stuff", he mentioned infection and loosing of the joint, but wouldnt tell me anything else. But I am trying to not over worry about this as for me, set back and failure are always part of the parcel with any surgery I have, but we shall just have to wait and see what happens I suppose. But I will come on and give you an update when I get results from both blood tests and the CTscan, but that might be quite a while, as anyone in the Uk will tell you, as utterally fantastic the NHS is, sometimes you have to wait a very long time.

I truely hope that everyone else has/will had better look with their THR than I have and are moving on with their life for the better instead of numerous set backs.

2 likes, 13 replies

13 Replies

  • AlexandriaGizmo
    AlexandriaGizmo sarah1996

    Posted

    Hi Sarah if I didn't know better I would say your pre HR xray was mine, I'm so sorry you are struggling to get fixed up properly, sometimes I wonder if Ops are always the answer, I haven't had one yet so can't be sure.

    Were you able to walk on your hip before and now, neither look good in my opinion, but I'm not a Dr so maybe its better than it looks.

    • sarah1996
      sarah1996 AlexandriaGizmo

      Posted

      Hi, well iv had 13 surgeries for my hips woth no real outcome

      You just keep doing them because they are the only option (for me) haha.

      I used to walk but as I got older the pain and problems got worse. Before surgery i was using crutches and now after im still using crutches for the OA and knee dislocations and my hip is just so week I just cant go out without them. I walk unaided in the house but my trusty crutches come out with me haha.

      I hope your surgery goes well 😁

  • renee01952
    renee01952 sarah1996

    Posted

    hello darling ...

    I have been thinking of you and wondered how you were getting on ... I am so incredibly sorry to hear about your struggles ... your plate is overflowing !!!!

    Sending you love, light and healing (wish I clould do more) and  a

    big warm hug

    renee

     

    • sarah1996
      sarah1996 renee01952

      Posted

      Oh Renee, how iv missed you. How are you doing?

      Yes things are very difficult but im still plodding along. Still doing my GCSEs because when I was telling you last that I was trying to get back into class for my exams,I unfortanetly was 4 marks off my grade when I sat the exams. So now im doing my English and maths and its slowly killing me haha. First exam is next Thursday! Scary haha

    • renee01952
      renee01952 sarah1996

      Posted

      awww ... sorry about missing the mark, darling ... good for you that you continuen to study though -

      how are your babies (lizards)?

      good luck on Thursday ! 

      angel blessings

    • judith12644
      judith12644 sarah1996

      Posted

      Hi Sarah, so sorry about your exams, must be so hard to concentrate when you are struggling with your hip. All the best for Thursday, Judith
  • maree32074
    maree32074 sarah1996

    Posted

    Hi Sarah 1996

    Just when I was feeling sorry for myself after my 3rd hip operation, I read your story and it puts things in perspective.   My last hip was done in January and was the result of a faulty hip (metal on metal) resulting in metal poisoning, pseuder tumor and numerous other things.  I will get on top of my situation in time but your never ending story has me realising how hard it is for some people.  I wish you all the very best and hope they find out a solution to your problem.  I live in Australia but think you are UK. Keep us updated on how things go. We are thinking of you.

     

    • sarah1996
      sarah1996 maree32074

      Posted

      Dont ever feel bad for feeling sorry for yourself! We are all climbing our own mountains and its hard!!

      Im so sorry about the metal poisoning, iv heard a lot of horror storries about the metal on metal ones. How are things now? Are they improving at all?

      Haha yes im in England, hope all is well in sunny Australia 😁 x

  • steve86482
    steve86482 sarah1996

    Posted

    Wow. You have been through way to much. I was going to suggest a second opinion and further testing to see what the cause is and get it corrected. I hope they make you feel better and soon. No way would I keep you waiting for the help. Best of luck to you
    • sarah1996
      sarah1996 steve86482

      Posted

      All of my current issues ars caused by the hip dysplasia, and at this stage its just to late to save anything in my opinion. But I am trying to get referred to a different hip doctor as mine is horrible and gives me anxiety attacks before my appointments with him. But i may also be getting referred to a knee surgeon so hopefully that happens and we can figure out a solution for these crappy knees haha 😂 thankyou 😁

  • lors23
    lors23 sarah1996

    Posted

    Sarah does not deserve any of this and has been through so much in her young life but she is an insparation to me ...my best friend who no matter what life hands her she can always cheer me up when l am going through my issues but in comparison its nothing to what she has and is going through. I hope and pray that life becomes better for her. l hate it that she is going through all this at 21 and if l could l would take it all off her so she could live a normal life.

    Keep being strong my peanut

    Love ya xx

  • denise79180
    denise79180 sarah1996

    Posted

    Holy crap. That's mega unfair. So sorry for yr struggles. I have hip dysplasia and joint hypermobility syndrome. I'm 52 and have had 1 hip replaced last year. Next 1 soon I hope. I have had to deal with pain and crutches since age 20 but nothing compared to what you are dealing with. Is it possible for more opinions from surgeons? Send yr X-rays etc to surgeons from all over. Get advice and see what you think.

    Stay strong and positive. Good luck and keep us posted.

    Denise

  • maree32074
    maree32074 sarah1996

    Posted

    Hi Sarah

    Its been a painful battle but I am moving forward with recovery.  From the faulty hip I ended up with metal poisoning and dont know what damage it has done to my organs, I had a fracture in the pelvis, hernia, massive pseudo tumor and there was no bone behind hip when it was replaced. I now have a massive plate that was fitted as well as bone grafting. The bone was donated of course. I had the vascular surgeon do the work first scraping and cutting away the tumor then the orthopaedic surgeon do his work.  It was extremely hard at first as I had to go off medication for rhemotoid arthritis which is in my fingers, hands and arms and this caused swelling in my hands and fingers so I could not get out of bed for a few days as I could not hold anything (frame etc).  The physios got me doing bed exercises.  I was on non weight bearing for 8 weeks with crutches then weight bearing for 4 weeks and am now down to one crutch.  I am still on my back in bed as I had incison on front and side and they are still sensitive as well as nerve and tendon damage which hopefully will improve with time.  I still do physio at home. I  find it hard getting in and out of the car.  I had a temporary stent removed last Friday and this has also improved my condition.  I am looking to the future but cannot help but feel robbed of some of my life with pain and suffering.

    I get really annoyed when people tell me that hips have come a long way with technology and I should be better than I am and of course knees and shoulders are more painful!!!@  (this from people that have never had surgery)

    I do hope you improve because you have had more than your share. All the best.

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