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Girdlestone

Discussion in 'Hip Replacement Pre-Op Area' started by angelbskts, Jan 31, 2019.

  1. angelbskts

    angelbskts new member
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    I am actually here trying to gather info for my daughter. She is 29 and has been wheelchair bound since surgery for hip dislocation when she was 11.

    For a long time she has complained of pain in the right hip and that it always felt dislocated. Well after 2 falls last July we found out that she has severe osteoarthritis and the right hip is dislocated. So badly that the implant they put in for the dislocation 18 years ago has migrated from what is the normal spot up into her pelvis! They had done bone grafts but evidently they didn't hold.

    Saw a new orthopedist today and he said the only thing they can do is the Girdlestone procedure and that she will have a "floppy" leg that will be quite a bit shorter than the other one (it is already 2 inches shorter).

    He said that we could do a replacement but that it would fail in short order due to nothing to connect it to with no actual hip socket. We are all devastated at the further disabling of her.

    Anyone have any other info or ideas of what we can do. This our 2nd opinion on her condition. I hope it is ok that I am posting on her behalf.
     
  2. Pumpkln

    Pumpkln FORUM ADVISOR Forum Advisor

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    @angelbskts ,
    Welcome to BoneSmart, glad you joined us!!! :welome:

    Yes! It is OK for you to be posting on behalf of your daughter, you are her best advocate.
    I am going to tag our Forum Nurse and Director, @Josephine , to address your concerns about the girdlestone your daughter may be facing.
    If you have any recent x rays, it would be helpful if you can post them.
    A few tips on posting xrays

    Please post all your daughters hip surgery procedures with dates. Having the dates will help us properly advise you and your daughter. A moderator will add the dates to your signature for you. Thanks!
     
  3. Josephine

    Josephine FORUM ADMIN, NURSE DIRECTOR Administrator

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    I am appalled to read this. It's 2019 for pity's sake - not 1935!

    No way is it appropriate to do a Girdlestone procedure. I've seen replacements done on 'mangled' hip for years. You need to search for a good hip surgeon who will be prepared to do this for her. It's very doable. I've seen numbers of them done over the years. An appropriate implant, specially designed for her and probably custom made as well. It's patently obvious those surgeons haven't a clue how to approach this so stay away from them!
     
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  4. angelbskts

    angelbskts new member
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    I do not have the most recent xray but the one I have is 3 years old and even it shows that the right hip is markedly different than the left. The top of the femur is now up into her pelvic area. She had bilateral femoral derotational osteotomies when she was 3 years old (1992). Then when she was 11 (July 2000) she had the placement of what they called "granny pins" to correct hip dysplasia and also bone grafts on the right side to build a hip socket as hers didn't form.

    She has been in wheelchair ever since then but was able to walk with a walker and drive a regular car (no hand controls). She also had tendon release on her knees when she was 13. She is now 29. She had 2 falls transferring to her bed this past summer. The first time she was able to help us get her up but the 2nd time she wasn't and we ended up having to call 911 to get her up as we just couldn't lift her.

    She has a rare form of spina bifida called terminal myelocystocele. Her right leg was already almost 2 inches shorter than the left. I haven't measured to see what it is now but I believe it is even shorter.


    catherine hips 2016.jpg
     
  5. maryo52

    maryo52 FORUM ADVISOR Forum Advisor

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    There is another person on this forum with knee issues who is seeking several opinions. I don't know much about hips although I can see what you're talking about from the X-ray. It's painful to look at! You are being a good advocate for your daughter, and I get you're pretty good at it. Sometimes it's baffling knowing who to turn to. One of our forum moderators can help you with names of surgeons in your area who specializes in difficult joint issues. Would that be helpful? @Jamie
     
  6. Jamie

    Jamie ADMINISTRATOR Administrator

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    I can help you find some options of surgeons to contact. Obviously you're going to need someone with some specialized skills so it may be that you must drive a bit to get to a doctor. Hopefully that won't be a problem for you. Tell me your zip code and I'll see what I can do. Be sure and tag me (type @Jamie in your post) so I'll see it quickly.
     
  7. angelbskts

    angelbskts new member
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    My zip code is 74501. traveling is difficult for her due to the pain and the fact that roads here are not the best. but we will see what happens @Jamie
     
  8. Josephine

    Josephine FORUM ADMIN, NURSE DIRECTOR Administrator

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    Yes, those hips and the history, look exactly like the hips we used to operate on 'in my young day'!

    Technically speaking, that right hip isn't actually dislocated, the joint is just malformed and misplaced as dysplasic hips often are. This was just the kind of hip the surgeon I worked with back in the day. We would do at least one or two every two weeks. Even then there were specialised implants we could us to restore the deformed joint.

    A suitably experienced surgeon (such as the one I worked with) would take on this operation with great savoir faire and his patients would invariably walk out of the hospital a couple of weeks later (but do remember we used to keep our hip patients in hospital at least until the stitches/staples were removed!). I even knew one young lady in her early 20s, who came back to do her nurse training! Jolly good nurse she was too!
     
  9. Pumpkln

    Pumpkln FORUM ADVISOR Forum Advisor

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    I notice you are a little over 3 hours from Dallas/Fort Worth. You might want to look into Gerhard Maale MD in Fort Worth http://dfwsarcoma.com, he specializes in complex joint reconstruction and joint salvage. His practice includes both adults and children, so he should have a good understanding of your daughters hip problems and spina bifida. Does she also have a Chiari malformation?
     
  10. Josephine

    Josephine FORUM ADMIN, NURSE DIRECTOR Administrator

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    It's very similar to a Chiari malformation but she shouldn't be side-tracked into considering a Chiari pelvic osteotomy. She needs a total hip replacement!

    Chiari malformation.png
     
  11. angelbskts

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    She doesn't have chiari. She actually is a very rare case. when she was born there were only 8 reported cases of her condition in the world and she was the 8th case. Now there are a lot more but mostly in Vietnam as she is an Agent Orange baby. I really don't think she could handle traveling 3 hours though. :(

    Are there other drs you would recommend that aren't 3 hours away @Jamie ?
     
  12. Josephine

    Josephine FORUM ADMIN, NURSE DIRECTOR Administrator

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    Can you give me a name for it?
     
  13. angelbskts

    angelbskts new member
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    Terminal Myelocystocele
     
  14. Josephine

    Josephine FORUM ADMIN, NURSE DIRECTOR Administrator

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    Oh yes - you said that earlier!
     
  15. angelbskts

    angelbskts new member
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    This is her most recent xray from July 2018. I personally don't see a big difference so in my opinion the first ortho we saw should have noticed it and said something.

    catherine hips 2016.jpg
     
  16. Josephine

    Josephine FORUM ADMIN, NURSE DIRECTOR Administrator

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    I responded to this comment in an earlier post and my opinion hasn't changed but I will repeat it: there is no earthly reason why your daughter can't have a total hip replacement though it would have to be a custom made one. It seems to me that some (younger) surgeons aren't able to grasp the concept of using a custom fit implant if it's not right off the shelf! I do hope you find one who is more open minded and willing to do well by your daughter.
     
  17. angelbskts

    angelbskts new member
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    Would you believe he has been in practice for over 30 years? I am still appalled at the whole thing. No plans on doing it at this time. She said she would rather live with the pain right now. Since our family dr gave her a muscle relaxant it is more tolerable and she is finally able to sleep at night which helps a lot as far as her depression issues that it has been causing.
     
  18. Josephine

    Josephine FORUM ADMIN, NURSE DIRECTOR Administrator

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    30 years in practice is a youngster in my book!
     
  19. angelbskts

    angelbskts new member
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    May be but for here it is a long term
     
  20. Jamie

    Jamie ADMINISTRATOR Administrator

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    I saw no acceptable surgeons in McAlester but if you could drive to Oklahoma City, this is who I would recommend you meet with. No guarantees that he is the best person for your very specialized need. We may need to look farther than Oklahoma City. I checked out Tulsa and also saw no one that I would recommend for you.

    Oklahoma City, Oklahoma

    Dr. Paul Jacob
    Orthopedic Reconstruction Joint Institute
    Oklahoma City, OK
    405-424-5426

    Dr. Maale is a possibility in Dallas. There are other surgeons in Dallas as well. I know three hours seems like a long drive, but that may be your only option for someone with the expertise to treat this problem. You might look into a medical transportation service to make things more comfortable.

    Please let me know if you decide to see this surgeon in Oklahoma City. I'd like some feedback on your meeting with him.
     

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