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My Mom Is Facing Knee Fusion

Discussion in 'Knee Replacement Pre-Op Area' started by jennifer02, Nov 12, 2010.

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  1. jennifer02

    jennifer02 Junior Member

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    Hello. I have been reading your posts and decided to join. I am having the most difficult of times with my mom right now.

    She had a TKR twice now in her right knee. She developed MRSA through her job (she's a nurse in a care facility) and the MRSA of course went right to the prosthetics. Naturally they removed it, cleaned it out and put in cement spacers. We were just told that they don't last and will eventually need to come out and a fusion will have to occur. My mother is a wreck b/c she is 64, should have died from this infection (it was more than just her knee it affected) and she has finally learned to walk somewhat with a walker on her cement knee with a knee brace. She is mostly in a wheel chair but is able to bend her knee and as I said, walk somewhat with a walker.

    What she and I are afraid of is that after a fusion she will be worse off. I read horror stories on fusions but I'm sure there are good sides to it. They also recommended either a fusion or I believe they said some sort of brace. meaning, nothing in the knee and a permanent brace. I have no idea how that would work out.

    She is scared to death either way. She has finally come home from the hospital after 6 months of being in there and now recouping but will soon have to make a decision. I have searched far and wide for answers and this is the closest I've seen and read on somewhat a familiar case. Any advice would be so helpful. She has gone to 3 orthopaedic specialists (including two from your clinic list) and all suggest fusion or the ladder. Its just a tough decision to make and both are so unsettling b/c doctors are so cut and dry these days that in the end we are completely freaked out about both. If any of you know any way to help shed some light on my situation I'd great appreciate it. thanks!!

    Jen
  2. Jamie

    Jamie Administrator

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    Hi, Jen...welcome to BoneSmart! I"m glad you decided to join our forum and hope that we can provide information and the support you and your Mom need.

    I moved your post to its own thread because you are much more likely to get comments this way. The folks on that thread have not been active since September, so it is not likely they would be commenting.

    First....let me say that your mother is lucky to have you to help her through this challenging time. MRSA is difficult at best and can be a real problem to get rid of. We have other members who have dealt with it or are going through it now.

    I am rather confused about the comments regarding the cement spacers. Usually they are placed as an interim measure when the old implant comes out. They aren't intended to be permanent. Then, once a person is infection free for a period of time determined by the surgeon, a new implant is put in.

    You mention your mother has had TWO implants.....did she have problems with both because of MRSA? Or were you referring to the cement spacer as one of the implants?

    Can you elaborate on why the surgeons are recommending fusion? Do you have any xrays or CDs you can post for our forum nurse to review?
  3. jennifer02

    jennifer02 Junior Member

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    Hi Jamie. Thanks for getting back so soon! Sorry I confused you. Let's see if I can break this down. Three years ago my mom had a TKR, I believe for the second time at University of Penn. She also had spinal fusion in L4 and L5 of her back (hope I'm saying that correctly) so there are, I am assuming, rod type instruments in her back.

    Because she works in a nursing home facility and deals with MRSA patients she is always at risk. Well that is what happened. She contracted MRSA in her blood stream and it flew to her spine and her knee and attached itself there. Because her knee was called the "command post" for the MRSA they removed the TKR and implanted cement spacers with vancomyician antibiotics that would help rid of the infection. Since it was not as bad in the back and because she already had surgery on her neck, heart and knee due to the MRSA the doctors felt it was extremely risky and not that necessary to go into her back and remove the rods in her back. She is on a oral antibiotic for life now to keep the MRSA stablized.

    I guess we knew it wasn't permanent but when they did this they made my mom feel like after it was all cleaned out they would put a new knee back in. Now they are saying that because the MRSA still lingers in her spine, doing another TKR will put her highly at risk for the MRSA to again attack the knee and most likely kill her indefinitely. They are pretty sure the MRSA is gone from her knee but are saying it's an 80% chance the MRSA in her spine will retreat back to the knee if replaced. The knee I am speaking of is the right knee. Its already been opened 3 times before the MRSA so the doc says the more time they go in their the worse it gets and the more the bones break down. They are recommending a fusion to finalize this problem. Either that or they say amputation could be a result as well.

    But one doc mentioned taking the spacers out and having my mom wear a knee brace without anything in her leg, meaning no knee. My mom has almost settled into the fact that she will never work again, never garden again and most likely never drive again but for her to think about never walking again even with a walker is just about devastating to her. She was a very active 64 year old who still worked full time. We are trying so hard to try and make the right decision on what to do. We are also scared to under go another surgery b/c she is at risk each time. The spacers were put in in April of this year. By Jan I know we are going to need to come to a decision. I just feel like we are missing something. We have no peace yet on what to do.

    I do have x rays. I'll have to get them from her and see how to put them on here. I hope I answered all your questions right. Thank you so much for answering me. THis has all been so scary and traumatic for her and me but especially for her.

    thank you again

    Jen
  4. Josephine

    Josephine Administrator

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    Hello, Jen. I have to admit that your mother's case is an extremely complicated one and I'm not at all sure how it alters the risk factor with the metal in her spine. These surgeons she is seeing or has seen - are they specialists in dealing with infected revisions? Can you tell us which hospital?

    Trouble is, just getting the names out of a directory doesn't always mean they are the best man for this kind of job. You need to quiz them and ask if they specialize in revisions, especially infected revisions. It doesn't inspire me with confidence that they are talking about these cement spacers as if they are an alternative to a proper implant. Plus, a fusion can be just as much a problem in the face of infection as a replacement and there's less of the hard, outer bone to make the fusion a good one. All in all, I think you need to find yet another surgeon but this time, one who really knows this problem back to front and inside out.
  5. brs0660

    brs0660 Forum Advisor

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    Jennn...you and your mom have had a rough time!!! I have no wisdom to add, but will be praying for you both!:pray:
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  6. jennifer02

    jennifer02 Junior Member

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    Josephine, we have been to both University of PA, the Rothman Institute (also in Philadelphia) and the orthopedic surgeon who took out her TKR to put the cement spacers in her knee with the antibiotics to help clear the MRSA. He was the original guy and he works out of the hospital (Abington) in PA that she was admitted to. The first two are the other opinions we went to.

    The one surgeon from University of Penn is Dr Booth. He had many books out and has an amazing rep. He was also the doc who designed the female knee replacement and put it in my mom years ago. We went to him and he was confused by the spacers as well b/c he would never have done that. The other doc at the Rothmen Institute had no idea what to say and was no help and after our long wait in the waiting room appointment was only in about 5 minutes. Very disappointing.

    Our plan is to wait through the holidays and go back to Dr Booth. I have no idea what he could do b/c when we first went to him he told my mom to recoup and come see him in a few months for she had just gotten home from a long stay in the hospital.

    My mom is so exhausted and cries each time she talks to a doc b/c its all so overwhelming. I just pray for clarity and answers and wait. Thank you Barb for your prayers. I am thankful she is alive but I hate to see her this way.
  7. Jamie

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    Yes, yes. dear Jen....this must be VERY difficult for you both. It's a very serious and complex situation, but I agree with you that you have not found the right answer yet. It is out there and you must keep searching!!!

    We have a member who had MANY bouts with MRSA and has found an excellent infection specialist. But he is in Texas......is there any chance your mother could or would be willing to travel to another state? Or do we need to search for someone in a specific area close to you????

    Hang in there and we'll do our best to help you!!!
  8. Josephine

    Josephine Administrator

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    Just been reading your posts again, Jen, and am wondering what are these horror stories you have heard about knee fusions? I'm just curious as they are done so rarely these days.
  9. jennifer02

    jennifer02 Junior Member

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    I guess i heart that with a fusion she wont be able to walk, drive, sit in a car, airplane, be uncomfortalbe, wear shoes to make her equal out in length that i hear only make you trip b/c they are awkard, tons of pressure on your spine when you are walking. Her doc does talk about it like its such a common thing to do. At first we went home thinking, ok great. sounds good. Then i gave report to people and they all were horrified so i did what any dumb person does....i googled it. ha! the internet is amazing for info but you don't always find the right answers or the ones you want to hear. When i voiced my complaints to my mom's doctors non of them reassured us that these things are rare, rather they just nodded as if to say, yes she will be completely debilitated in all those ways above. They all kept saying "oh that is a long ways away and down the road.....so mom and i were thinking YEARS. now a few months later the doc calls and says "um your cement will have to come out soon and you need to consider either a fusion or an amputation." Actually He didn't call, we had to call him. All three specialists say another TKR is out of the question. Too risky and i do have a peace about that. I feel they are correct in that b/c she still and might always have this MRSA.

    I am willing to travel but i'm sure insurance doesn't cover out of state places, and b/c philidelphia supposivily has two top list places insurance would insisit going there. I guess it would really depend more on how much it would cost and how and if insurance would work with us. We are also in the middle of finding a lawyer b/c in the very beginning when she first went to the ER not knowing why she was in tormenting pain they turned her away and sent her home and refused to exam her by anything other than a "look over". the second time we brought her back, they put her in the corner of an ICU level, closed the door and bascially left her to die until i showed up and raised hell. ha! this was the first hospital. we then transferred to Abington (right outside of philly) when she was semi stable. but thats a whole other issue.

    Ugh i feel like the "debbie downer" but it does feel good to actually vent these issues. I guess i also wonder what are good questions to ask the one doctor that we consider above the other too. We want to go back and see him b/c he said to rest up and come back. Or do i just can them all and start from scratch again.

    Thank you all for reading and posting. sometimes i feel so utterly alone.
  10. Josephine

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    Well, all of that is, to one degree or another, true. But we used to do lots of fusions when I was a young nurse and patients seem to adapt to them pretty well over time.

    She will be able to walk and sit in a car, of course she will. As for driving, you haven't said which leg it is but there are plenty of adaptations you can get on cars that make it possible for the disabled to drive - how do you think paraplegics drive?
    Yep, the internet is a mixed blessing on occasions, isn't it! But I think those doctors went quiet because they didn't quite know what to say nor appear to make any promises that might come back and bite them in the (ahem! :whis:)
    That's a dreadful ultimatum! And a tad too soon to be making it that cut and dried. I think you just haven't been to the proper kind of surgeon - I don't care how much of a good 'rep' they have, it matters squat when they mess things up like this.
    Well, once you've found a promising surgeon, you'll have to talk to them about it and see if there's any arrangement you can come to. Jamie might be able to offer some suggestions there.
    That's also awful! What a terrible time she's had. But, I wouldn't mention that to any surgeon you go to!
    Well, there's a list in the Library in a thread called "How to choose a prosthesis and a surgeon" that should give you a few ideas.

    Were I in your shoes, I would be giving serious thought to 'canning them all and starting from scratch'.
    Please don't worry about that. You have a place now to come and vent and worry in. And we'll all do our best to help you through this. That's what we're here for. Okay?
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  11. Jamie

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    Jen, I really agree with Jo's suggestion that you not give up on the search for another doctor just yet. Your mother ALWAYS has the option of the fusion, but if something else could be done it would be worth a try.

    First thing to do is to contact her current insurance company (or review the policy) and see if a meeting with an infection specialist and an orthopedic revision specialist out of Pennsylvania is covered.

    Also, send me a private message with your mother's zip code and the names of the doctors you have seen (also list where they practice). I'll see what I can find close to you (if anything). If not, as I mentioned before, one of our members had really good success with doctors in Texas and I can find out who and where they are.

    It likely would be cost prohibitive for you to go to them without some insurance coverage, but you never know. It's always worth asking about. You would be liable for your airfare and hotel costs. That would be the case even if insurance covers the medical charges. Most insurance companies do cover costs out of state. The only time I know that is a problem is if you are in a prescribed network where out of network doctors are not covered. Hopefully that is not the type of insurance she has. By the way....is your mother covered under Medicare? That makes a difference too....whether she has Part A, Part B or both.

    I'm glad you found BoneSmart so that you have a place to come and talk about all this. It will seem much less daunting once we start chipping away at it in small steps. We'll be here for you and will help as much as we can!! ((((HUGS))))) to you both!!!
  12. jennifer02

    jennifer02 Junior Member

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    Thank you Josephine for that info. I also get that feeling that we should start from scratch. My mom just has to be mentally and physically prepared to do that ya know, but I think she might agree as well.

    I am so glad i found this site. Jamie thanks for redirecting my post into a new thread. I had done a google search and that other thread was where i landed. thank you for creating this one for me.

    One thing that was mentioned to us from one of the orthopedics we saw was to look into getting a second opinion from a infectious disease doctor. Our current one we have we love and she's great but it was suggested to see others. Is it worth it? I will definitely look into revision specialists.

    Any other suggestions are always appreciated. thanks again so much!
  13. Jamie

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    Yes, I do think you need to see an infection specialist in conjunction with the revision specialist.
  14. RestAssured

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    Hello Jen!:D

    You and your Mom are not alone in your fight of that dreadful MRSA and revisions! I am the one from TX that has a great revisionist!:wink: The thing about him is he only accepts the hardest cases, and I know that your Mom would definitley qualify! Don't expect him to be a real "chatty kathy":wink: but before he walks in the room, he knows your Mom's case inside and out! He will be honest about what can be done, and he is willing to do surgries when most doctors have given up hope on saving the leg. If you ever need to talk to me I am always around. They didn't know if they would be able to save my leg, but now, they can't find any infection!

    Take care and tell your Mom that there are doctors out there who can do miracles for her!
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  15. Jamie

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    Thanks for the post, Sonja. I have sent the details to Jen in a private message and she may be contacting you to talk.
  16. lawdog

    lawdog Junior Member

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    God Bless you and your Mom!
  17. skigirl

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    Jen, I am so glad that Jamie is helping you because she is wonderful in finding specialists. I think too that it would be worth a phone call to the specialist in Texas that Sonia uses--he could probably help you find someone in your area--and, even a consult that is long distance with him might give you some options that do not exist right now.

    Many docs now do long distance consults--you send them the xrays, lab tests, hospital records. They exam the case and can often make suggestions from afar. Also, if it is a case of saving a leg, then the distance becomes less from my point of view.

    I relate to your mother's feeling--I am a pretty active 66 year old and would not like to be talking about a fusion right now---I would explore every option before I went into such a permanent path. Now is the time to gather information---I think your mother's depression might lift a little if you involve her in the search---it might give her a little hope. I cannot imagine what six months in the hospital would do to me either--that is such a daunting task.

    MRSA is such a huge risk, I can see that it will change nursing if it continues to be this devastating. I think your mom might benefit from communitcation with Sonia---it is a relief to find someone else in the same predictament. Kelly
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  18. Jamie

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    Excellent post, Kelly!! You have offered some wonderful suggestions that I had not thought of! :thmb:
  19. jennifer02

    jennifer02 Junior Member

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    Thanks Kelly! I never thought about doing an over the phone consult. I am however going to call every orthopedic that bonesmart recommended on their list within driving distance and ask each one if they specialize in revision and infection until i can narrow it down to a few, then we will go see each one. I am also going to try and find infectious disease doctors that deal primarily with MRSA. Their seem to be a few MRSA infection disease centers within a reasonable driving distance from us.

    The bottom line is, the cement spacers in her leg will have to come out in a few months. What will go in there is the question. Now since she has osteoporosis and has had this knee worked on 3 times in 15 years the bone structure i'm sure is very broken down. We are afraid they will go in there and see how bad it is and have to take a different route. Because she will always have MRSA (every doctor we have seen says you never get rid of MRSA, if just lies dormant and that some of us can carry MRSA and never know it or have it attack us, ugh i don't even like thinking of that) So because she will always have it all the doctors we've seen so far are against putting in a new knee for they feel its as high as an 80% chance the infection will go straight to it. But my thing is, isn't their risk the infection will hit the fusion. isn't their metal involved in a fusion? and what about a stabilizing brace instead of a fusion. take the cement out, sew it up and put nothing in there. But can she walk on that? I told mom all about this site and what you all have been saying and advising on. She is far from computer savy so I do it but i show her everything and print it out for her to read. So for now she feels she needs to take it easy with the leg so the cement won't break so she can make it through the upcoming holidays. so for now we will start on our homework. I will def. look into talking to this doc in Texas via phone. I love all your suggestions, input, stories, and prayers. God's definitely at work. Looking forward to what He has planned for this.
  20. Jamie

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    Jen, the reason I have been impressed with this Texas doctor is that he and the infection specialist he works with felt they COULD rid Sonja of the MRSA...even though she has had many bouts of infection. So I'm glad to hear you are going to talk with him.

    I think your idea of talking with closer clinics is great too....you may find someone similar closer to you. It's a daunting task, but is sounds like you are ready to go at it. Hang in there and don't get discouraged!!
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