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[THR] Particle disease ... Yikes, now what ???

Discussion in 'Hip Replacement Recovery Area' started by Casilliman, Apr 7, 2013.

  1. Casilliman

    Casilliman New Member

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    Hello board,
    I am brand new here, but a hip replacement veteran with a new problem. Particle Disease. I need advice if anyone has some.

    Quick Hx of my hip and I ...
    I was Dx with avascular necrosis in 2001, underwent a core decompression in August of that year, followed by a THR in Feb 2002 after a spontaneous fracture. That replacement lasted 10 years and one week. I never experienced 'pain relief' in those ten years, and my first OS said it was bursitis, that my xays always looked 'fine'. So ... after a decade of relentless pain, I went for a second opinion, and the new OS did more radiology studies and dx was made of a large golf ball size cyst in the acetabulum. He made me stop working that day, as he said the hip had become unstable and a catastrophic event could happen at any time.

    Nuff said, so off I went for revision surgery. He did a partial revision of the cup on March 6, 2012, with much drilling and filling of the cyst area using allograph. The surgery went well, and I had legs the same length again to boot !!

    After months of therapy I was not able to get off the cane, and I had (as before) poor muscle strength at the surgical site, and my scar seemed to have no 'meat' under it, like if you touch the scar it seemed to go straight to the bone. The OS went back in and did muscle reattachment of all three glutes this past August. (I suspect that the muscles didn't work well after the first TRH and they were atrophied from long ago)

    Fast forward to current status, 13 months post op, I am still walking with a cane, with a great deal of muscle weakness in the back and very distressing pain in the thigh ( I also had a torn meniscus in the R knee, and he repaired that four weeks ago).

    I had a bone scan last week, and the results were 'hot spots around the prosthesis, suspect loosening, and particle disease". The OS said that since my surgery was just a year old, it was possible that the hip would continue to heal, and to come back in 4 weeks to follow up and discuss it further.

    I am trying very hard to maintain a positive attitude, but it's not easy. I can walk without a cane but it is quite painful and after about 10 or 15 steps the limp gets worse, and it causes more pain in other areas such as the hips and spine. (I also have a fx L1 vertebra for 13 years, painful every day too).

    Has anyone here had particle disease? Or two revisions in the same hip? I have done as much reading on the subject as I can find and the only literature I have read about treatment for particle disease is revision surgery. I think at this point I would rather eat ground glass than do that again but what other options are there ??
  2. Jamie

    Jamie Administrator

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    Welcome to BoneSmart! So sorry to hear of all you've been through. We have had members who have had multiple revisions. The key to success will be making sure you have a surgeon who is very experienced in the revision process. It may be that you should check around a bit before proceeding with any more surgery.

    Unfortunately, if your prosthesis is loosening, the only option is a revision. Without it, the bone will continue to die back and pain will increase. I'm going to tag our forum nurse, Josephine, so that she can comment also.

    We'll be here to help you get through all this. Please continue to post with any concerns or questions you may have.
  3. Casilliman

    Casilliman New Member

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    Thank you Jamie, I appreciate your words of encouragement.
    My first OS let me down, I feel, by not looking for the problem. I went two years between OSs, because I took the first one's advice to heart, and felt like I would just have chronic pain, and that nothing was physically wrong. When I went for a second opinion I chose a new OS, my current one, who was the head of ortho for a leading hospital in the area, and came with great reviews. I feel confident in his care, and it's my body and overactive immune system that is working against me. Thank you for tagging my post to Josephine. I am new at this forum business :)
  4. Jamie

    Jamie Administrator

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    I'm glad you have a surgeon that gives you confidence. But do be sure that he is also a very experienced revisionist. This is critical for any future assessments and surgeries.

    I agree with your idea that the original surgeon dropped the ball in your case. It happens. But, the important thing is to have someone who is actively working on a resolution for you. Please continue to let us know how you're feeling and how your hip is getting along.
  5. sharonslp

    sharonslp Forum Advisor

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    And please don't eat any ground glass. You have enough to deal with! Seriously....it's not hard to imagine how the thought of yet another surgery would drag you way down. Come here and vent and find ways to cope with this latest setback....we'll do our best to help you get through it with your sanity intact. Assuming you still have any sanity left after all you've been through. Particle disease....never heard of it....off to google it now.

    Sharon

    Okay....sheesh! Another thing to worry about!
  6. Jaycey

    Jaycey Moderator

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    Welcome to BoneSmart! Doesn't sound like you have had much fun with that hip. I am sure Jo will be along soon to advise. Hang in there!
  7. Casilliman

    Casilliman New Member

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    Hello Sharon and Jaycey, thank you for such a nice welcome ! I truly appreciate the offer to vent here, but as I'm sure you understand, I have reached the point that I am tired of hearing myself complain... I know my friends and family must be. I try to be positive about the situation, but it's really difficult, especially when no one that I know has ever walked in my flats ( yet another whining topic for me... I love high heel shoes .... I was always too tall for heels, 5'9", and now that I have married a man taller than me, 6'3", I can't ever wear them because of all my hip and spine issues. Fate, what a cruel little minx you are!!) It is a gift to be able to talk to others HAVE worn my flats, so to speak.
    I am currently a student, I go to school part time three days a week, and I work every weekend as a unit clerk. I am a licensed nurse but I cannot do effecticve patient care with this level of disability. I am hoping that I can hold off on any more surgery for at least another year so that I can finish school for my RN degree. I feel that I have too much to offer, and I am trying with all my determination to stay away from disability.
    thank you all for listening :)
  8. Josephine

    Josephine Forum Admin and Mother Hen Administrator

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    Well, first off, please be assured that we never tire of people complaining! We are the ever open door and ever ready ear to people who want to complain and vent as we know what it's like to be in situations like this.
    Doesn't it really do your head in when they keep assuring the patient that all is well when something like that is staring them in the face?! "None so blind as them that won't see" comes to mind!
    "particle disease" is a radiological diagnosis not a clinical one. The clinical diagnosis (so far as I am aware) is giant cell granulomatous response or aggressive granulomatosis, an invasive degeneration leading to osteolysis or bone die back all of which are precursors or directly indicative of loosening. (LINK) It is also my guess is that the acetabular cyst was an indicator of this situation.
    Possible, maybe. I wouldn't hold my breath on it though.
    I've known a few people that have had 3 and even 4 revisions on the same hip though each succeeding revision failed to reach a good outcome in all but one case who surprised us all by being really good! Sad fact is that if the implant is loose and you do nothing you are destined to a life of pain and even fracture if the bone gets so frail if gives way. You are in a sorry position and I really feel for you.
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  9. Casilliman

    Casilliman New Member

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    Thank you for your kind and supportive messages Josephine, I sincerely appreciate your input. Yes, it was very frustrating with the first OS, one visit about 18 months after the surgery he said "hmm, well maybe I dropped my car keys in there". Nice, huh ?

    When I did see the second OS for his opinion he told me then that the cause of the cyst was loose particles from the first prosthesis, that over time wear on the parts can cause this, so you hit the proverbial nail on the head. When he read the radiology report, my heart just sank because I knew it meant that the particle problem was still a problem.

    During that 10 years between surgeries, I was as active as I could stand be with the chronic pain, working full time, and picking up extra shifts when I could to save up for a long overdue vacation. I even had a year of gym time and lost 50 lbs. (which, in the past 13 months of 'down time' most of it has found it's way home ...)

    Now I have to decide if I should continue going to school, or thow in the towel and cut my losses. I have spent the past three years going to classes part time around my job, fulfilling my prerequistes. I was supposed to start the nursing program this past January but I postponed it due to the knee surgery, plus, you can't do clinicals if you are walking with any aide (like my handy dandy cane). Each hip surgery I have had has put me out of work for a year. If I have a revision, I'd be out of the program due to absence, or . If I don't have the surgery, I am rolling the dice. Maybe I should reconsider another profession, but I do so love being a nurse. It's not just what I do, it's who I am.

    I am truly grateful to have found this board. It's lovely to meet you all, and feel understood. I will let you know how the next Dr. visit goes. ( April 29th)

    Wishing you all a blessed evening!
  10. Jamie

    Jamie Administrator

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    Hang in there, hon!!! No need to give up on your dreams just yet. Keep talking and weighing all the options and the right path will become clear to you. We're here for you!!! So....talk away!!!
  11. Josephine

    Josephine Forum Admin and Mother Hen Administrator

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    I love to hear you say that! That's my thinking also.

    As for the training vs surgery, you can't put this off because of study, it will only get worse and trust me, the worse I know of you do not want! So please make this a high priority. Your training will have to wait.
  12. Casilliman

    Casilliman New Member

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    Good evening Ladies, (and any gentlemen that may be reading this thread)

    Thank you for your posts Jamie and Josephine. I am putting any decisions on the shelf until my next Dr. appointment. The idea of him going in AGAIN and doing all those unsavory things to my body, and all that pain afterwards, makes me physically sick to my stomach. Also, both hip surgeries put me out of work for 12 months, and both times I lost my job because of it. I just now started working two months ago, and it gave me back a little feeling of self worth again, even though it's not as a nurse.

    I do have some questions, if you don't mind ...

    Is it common, well, in this type of situation anyway, for an OS to do a second revision right away after a scan like mine or would one wait a bit and recheck again at a later time? I recall after my first surgery, the school of thought was 'make it last as long as possible because revision surgery is more involved and less successsful'. And as you said, each one is typically less successful than the one before.

    Would they use something other than allograph to replace the damaged area of bone? Is there anything other than allograph to use ? Does allograph have anything to do with the granulomatosis or is it more likely a continuation of the original disease process further progressing in the bone?

    Could I buy some time going back to crutches and less weight bearing ? Park my bottom back in the wheelchair perhaps ?

    Is crawling under a rock and pretending nothing is wrong an option ?

    I suppose I am grasping at straws, and I really don't want to put off school again. I have done it twice, but Josephine, you are right. I would rather schedule surgery if I do need it, rather than have an emergency situation happen.
    My last revision was not a happy experience, (not that many people's are ...). I scheduled the surgery to be done during my spring break week. I had surgery on a Tuesday, went home on Saturday, and I was at school on Monday morning, in a wheelchair, to take an anatomy lab practical exam. I must say, I never missed a day of school, but, alas, nursing school is a different animal.
    On my eldest daughter's birthday this past October, she, my youngest daughter, and I all went for matching tattoos. (they are 27 and 23) On my right foot (my impaired leg) is an anchor with rope and the phrase "Refuse to Sink" so that I would always be reminded that 1) failure is not an option and 2) they stand beside me no matter what. So they have told me, If one of us starts to sink, the other two yank 'em back up. How's that for a 'support system' ? :)
  13. Giraffe44

    Giraffe44 Member

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    Crawling under a rock isn't an option--too uncomfortable. Coming on here where there a lot of sympathetic people is a good option. I can't say anything to your specific medical problems other than to encourage you to hang in there. You're young and you can't sink--just swim carefully.:flwrysmile:
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  14. Josephine

    Josephine Forum Admin and Mother Hen Administrator

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    I don't think you fully grasp the gravitas of your situation. If you do have metallosis or local tissue reaction, then you need to get that device out of there ASAP, because it may be destroying soft tissue as we speak. I know this sound scaremongering but didn't I say before
    It's not the bone that's at risk with this, it's the soft tissues. Please don't hang around, get yourself to a really good revision surgeon ASAP.
  15. Casilliman

    Casilliman New Member

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    Thank you for your kind words and for understanding my desire ( albiet unrealistic) to go hide... and for the adorable flower :) it brightened my day. And I actually did go sort of swim with my grand daughter (age 4) this afternoon. In the therapy pool at the gym. Time with her is the best part of my days.
  16. designergirl

    designergirl Senior

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    Be strong, take a deep breath and please get the help you need. It really stinks that you are having to go through this. You have been through a lot and you are strong, you can do this. Sending healing thoughts and prayers your way.

    —Susan
  17. Casilliman

    Casilliman New Member

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    Actually, yes I do grasp the gravity of this situation. And, yes, you did say that I need to address this ASAP. I came to this forum after spending untold hours looking up particle disease, osteolysis, allography, and possible treatments ( some websites do mention medication for some types of bone loss secondary to chronic inflamation ). I brought my last flicker of hope here with me too.

    Having surgery now will most definately put an end to my education that I have worked so hard to achieve, and my aspirations for continuing to work as a nurse, or work at all for that matter. All I will have left is a rather large tuition repayment book and no income to cover it.

    I do feel that my OS is a really good surgeon,and I will see him in 19 days. I have compiled a list of questions for him too, beginning with 'how many of these types of surgeries have you done" I do also plan on getting a second opinion if he has limited experience.

    I appreciate your time in answering my questions, and for all the support and encouragement I have recieved from this group. It was nice to have met you all.
  18. Annette

    Annette Member

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    Since I will soon be a candidate for hip revision surgery I've just re-read your posts and others comments. My situation involves a crack in the cement causing loosening of the prosthesis. I'm also trying to "buy time". I'm not sure that's the wisest approach.
    I am hoping you'll keep us posted after your upcoming OS appt.
    All the best,
    Annette
  19. Casilliman

    Casilliman New Member

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    I wish you all the best too, Annette, and thank you very much for your kind words. My parts were never cemented, so I don't know what you are going through exactly, but I can most definately relate to the dread of another surgery. Are you having much pain ? Have you scheduled your surgery yet?
    I saw the OS today, he is sending me for a needle aspiration of the acetabulum under fluroscope to assess the fluid to determine inflamation vs. infection as the cause of the increase in pain and the findings on the bone scan. I am also getting an injection of steroids while he's in there (yay, lucky me). I will find out next week after the test whether or not the problem is my auto immune disease or if it is osteolysis.
    I also declined the invitation for nursing school this summer today. That was really hard to do... again ... it's like watching the tail lights of the last bus out of town drive away without me.
  20. special lady

    special lady Guest

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    Good morning Casilliman,

    I'm truly sorry your going through all this with your hip, I know exactly the frustration, disappointment, fear, anger, apprehension, and sadness your feeling, then to top it off the pain your hip is causing you. I've had six surgeries on the same hip. The most important thing I've learned is a revision is only as good as the surgeon that does it. You don't want a OS that is good at THR's and does revisions too, you most positively want a "Revision Specialist" that specializes in hip revisions...not knees & hips, only hips.

    You don't have to give up on your nursing education, part of the reason for my recent revision was due to particle debris which caused the cup to loosen, the needle aspiration your OS has you scheduled for might not confirm this, which doesn't mean you don't have the debris/particles or loosening. The needle aspiration didn't confirm the particles/debris in my hip. I'm telling you that you don't have to give up on your nursing education because a revision can be very successful....and you can end up feeling very well after the problems are taken care of by the right revision specialist. I can already tell there's a huge difference in my hip even with the post operative pain I'm still experiencing 12 days after.

    Hang in there, and I wish you the best!

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