“Aseptic Lymphocytic Vasculitis”- ever heard of it?

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Well, neither did I but yesterday I saw a brilliant Rheumatologist who finally correctly diagnosed what’s been going on with me 6 months out of my anterior replacement. I had my left hip super cap x 5 years ago and my right hip anterior approach replaced 7/3/2017. Complications included debridement 5 weeks out and 4 weeks IV antibiotics. My pain continued to increase- Sed Rate and C-reactive protein just elevated x 4 weeks ago. MRI revealed inflamed muscles...a tap of my hip was negative for infection. At my wits end, “see me in 6 weeks’ with no plan of attack I was seen by a Godsent yesterday. He diagnosed me in no time- and although I know it sounds crazy since I will probably need a revision, I feel a weight has been lifted. I am providing this to all of those on here who have unexplained pain and are told to go home and wait.....I’m not by any means saying this is what may be wrong with you, but I’m a physician and never heard of this....NEITHER DID MY SURGEON! So don’t let them tell you there’s nothing wrong or no more they can do... persevere. Keep fighting. I will keep you updated and support you in any way I can...

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10 Replies

  • Posted

    Lynne, it's better to have a diagnosis and treatment plan, whatever that plan is, than to be in limbo, hurting and debilitated. Yes, when we are not ok, we must keep on encouraging professionals to figure out what the problem is! Wishing you all the best in what is to come for you. 

    Is your prosthesis metal-on-metal? From what I read after googling, it looks like this is much more likely with MOM.

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  • Posted

    I've had 2 debriedments and the hip joint removed and filled with cement and antibiotcs. Sed rate is 10.5 so on antibiotics for another 2 wks followed by aspiration of the hip. Can have replacement as soon as no sign of inf. I had never heard of it before and frankly, feel like i have PTSD from ot. Pain is awful. Just hope it goes away after the surgery. What do you take to relieve pain? Nothing works on me. Been going on since Aug.

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    • Posted

      Nothing makes the pain go away- the doctor yesterday chastised me for not taking enough/stronger pain relief- right now I am taking Vicodin 10/325. Drinking wine on top of it as well 🤪🤪 along with naproxen... still having pain

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  • Posted

    Dear Lynne

    Yes however daunting the prospect of a hip revision is and I know for myself, at least you have a plan and can see a way forward rather than waiting and in pain.

    Do you have a time scale for the surgery yet?

    All the best.

    Richard

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    • Posted

      No. I live in Milwaukee and was given names of only 2 doctors comfortable doing replacements. My husband thinks a Center is better prepared. I have an appointment here in town 12/18, but have already sent my info to Mayo Clinic, but have yet to hear from them. I will call on Monday. This needs to be acted on sooner than later
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    • Posted

      Dear Lynne

      When I needed a hip revision earlier this year I made big efforts to find a surgeon with a proven track record for doing them successfully. Although it delayed the surgery I'm quite certain that it was the right thing to do in my case.

      I believed that a revision was potentially more difficult than a primary and did not want to reproach myself that I had not done as much as possible to ensure a really successful outcome which in the event it was.

      All the best, Richard

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  • Posted

    So can we say if we have unexplained pain an MRI would show if a revision is needed  or there are muscles problems? 

    How is an infection of the actual replacement diagnosed? 

    I’m new here and do not understand some of the lingo. 

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    • Posted

      You must remember, I am <1%. No MRI or any other test can be 100%. I am providing my status for all of you to learn from. My MRI was performed because my ESR and CRP ( blood tests, become familiar with them) for some reason elevated, I have not had a normal post-op course from the beginning ( this is my second hip so I know what happened the first vs. second time). When my MRI showed some fluid, I had to have the hip tapped under radiology, to make certain the blood tests were not due to infection. Infection was ruled out, so now the surgeon had no idea. The Rheumatologist did this diagnosis. 

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  • Posted

    Jope you get sorted soon Lynne. Also find out what type of implant they are using with the revision. Ive got ceramic with a titanium stem. Works beautifully x
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