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What to do?

Posted , 11 users are following.

Milvain34
Milvain34

I had a THR in 2008 and after several dislocations and then recurring infection it was removed.  I now have no hip on the R side, it has fused. This is called a "girdlestone"  and most doctors haven't heard of it.  My surgeon has found that the fusion area has cracked and I am having pain again.  He has said to do another THR or he could just go in and plate the fusion to remove the pain.  My leg is 4 inches shorter than the other, and I cannot sit or walk properly.  I use a walker and power chair for long distances.  I am terrified to go back to surgery!  But the pain is getting worse.

Has anyone had an experience like this?  I really don't know what to do.  Any suggestions, anyone?

Thanks

4 likes, 11 replies

11 Replies

  • sarah1996
    sarah1996 Milvain34

    Posted

    If you go to the thread called My story that i wrote i think you may have the same issue as me. I have my xray on there. If it us we may be able to give each other advice?
  • ian97093
    ian97093 Milvain34

    Posted

    Hi Milvain, how old are you ? What do the Specialists say they can do for you?

    Terrible that you had dislocations too just wonder how they happened ?

    You need to give us more infomation and it sounds like quite a story, so if you write it then do it in a separate file on the PC, then coly and paste it inot your reply box.

    I for one am looking forward to hearing about it, how it started, and where its going.

    Thanks for sharing it here.  Ian.

  • tony68114
    tony68114 Milvain34

    Posted

    Good evening, I am so very sorry to hear of your predicament and problems. I can however understand a little, my two THR are 27 years old and have worn out and created voids in my pelvis, l have A.S. with total spinal fusion. My Surgeon in Inverness cannot help and next month am due to see the world renowned revision specialists in Exeter, 750 miles from home. Having no hips has been suggested to me in the past but have never heard of anyone in that position. I have been on crutches for 30 years but you say you cannot even sit comfortably so my thoughts and best wishes go out to you, afraid I'm not a lot of help or comfort, Tony
    • sarah1996
      sarah1996 tony68114

      Posted

      I technically dont have a hip (im 20) but have had it like that since i was very young. Now the only thing they can suggest is hip replacement and reconstruction.

      But your hips lasting 27 years is rather amazing. Best of luck

  • CelsB
    CelsB Milvain34

    Posted

    I'm not sure I can even imagine what you're going through Milvain but I can completely understand why you would be terrified of going back for more surgery.

    The alternatives though are ongoing pain and discomfort.  Just imagine what difference having a successful THR would make to your life if that were possible.  I would certainly want to be referred to a specialist in this field but you could have a whole new quality of life.  I think you owe it to yourself to at least explore the possibilities.  Plating the fusion doesn't sound as positive but if it would remove the pain it must be worth thiking about, surely?

    Easy for me to say I know.  Mine was a straightforward hip replacement.  I think we would all like to understand a little more about your condition though if you'd be kind enough to tell us more about it.

    Cels x

  • renee01952
    renee01952 Milvain34

    Posted

    Dear Milvain,

    Warm welcome to this forum -

    I am so sorry to hear of the pain you are in ...

    What is the alternative if you don't get THR surgery? Do you trust your surgeon? 

    I wish I could help you -

    Please stay in touch and let us know how you are getting on okay?

    Big warm hug

    renee

     

  • Milvain34
    Milvain34

    Posted

    So after reading the reponses I am thinking I should get a second opinion.  I have no idea how long that might take.  Also my othorpedic is supposed to be one of the best in Canada.  The best case I am looking for would be to sit properly, as that would make life so much better for me.  (Think using toilets).  I am not too worried about walking well because I haven't for the last 8 years.  With a total of 11 surgeries on my hip since I was 12, I don't imagine that I have the muscle strength to improve much.  This also worries me as far as keeping the THR in place.  One of the replacements done in 2008 and I had to wear a body cast for 2 months to hold it in place.  The minute you put a cast on it restricts your mobility.  This defeats the purpose of being able to move.

    I will keep thinking and watching and reading on these forums.  Thank you for the input.

    • rose0000
      rose0000 Milvain34

      Posted

      Wishing you the very best, what a brave person you are. Please keep us posted as to how you are getting on, and if we can be here for you in any capacity come back. It is a great forum for support. God bless.
    • CelsB
      CelsB Milvain34

      Posted

      I do so hope you can are able to resolve your problems at least as far as sitting comfortably and controlling the pain goes.  That alone would very much enhance your quality of life.  I see what you mean about lacking the muscle strength to keep the THR in place.  Has your surgeon offered an opinion on that?  

      Do let us know how you go on Milvain.  I will be thinking of you.

      Cels xxx

    • ian97093
      ian97093 Milvain34

      Posted

      Milvain.....you have brought a few tears to my eyes reading this post...so much time recovering from the knife...I do so hope that there is something that they can do for you and that all is not so hopless as it sounds,,,,cry ,,,,,,,,,kindest wishes for a better outcome next time smilecool

      Keep us posted.  Ian.

  • lynn66084
    lynn66084 Milvain34

    Posted

    I have heard of some people who have had their hip replacement removed, and wondered how they would cope,  I wouldn't like to go through what you have, it must be very frustrating, but if they can help get rid of the pain, maybe it will be worth it.

    Good luck on what you decide.

    All the best

    Lynn xx

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