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Has anyone experienced severe nerve pain after surgery for osteomyelitis?

Posted , 4 users are following.

melindasmakeup
melindasmakeup

I've been having severe nerve pain in my jaw where I had a bone debridement surgery for Osteomyelitis. I had been on I.v. antibiotics for a long time and supposedly in a "remission" of sorts, but still experiencing severe pains in my jaw and also muscular jaw pain. I don't know what to do except keep taking Vicodin. I am hoping the nerves will repair themselves and improve in time. It's been 6 months since surgery...

0 likes, 10 replies

10 Replies

  • donna68767
    donna68767 melindasmakeup

    Posted

    Hi Melinda, sorry to hear about your situation. How did you get osteomyelitis, how long have you had it, did you have antibiotics before the debridement ?. I had acdf surgery in Aug 2013 and got osteomyelitis in my neck. I have had iv antibiotic drugs and a pet scan did show some improvement but my surgeon does not want to go back in and it worries me that it will just keep coming back. I am constantly in pain all over my left side including my jaw, meds include tramadol, solphodol, duloxitine and morphine and nothing really helps and I don't get much sleep. My hospital have offered me a pain programme to help deal with the pain, joke!. I have been told that my nerve damage is permanent and they have told me I now have central neurpathic pain syndrome which is for life, I don't know if your nerve damage would repair?. Hope you are not suffering too much today, speak soon Donna xxx
    • melindasmakeup
      melindasmakeup donna68767

      Posted

      Hi Donna. Yes I've had five surgeries and five picc lines for antibiotic therapy. The surgeon doesn't want to do anymore surgeries and I'm at risk for getting a jaw bone replacement surgery. I'm praying I won't have to though. I am also on duloxetine, Vicodin, Advil, and have tried Tramadol but it's too strong for me
  • donna68767
    donna68767 melindasmakeup

    Posted

    Hi Melinda, not good, sounds like you have had a bad time. Did your osteomyelitis come from dental work with it being your jaw, mine is in my neck so it does affect my teeth and jaw but my left side upper body is worse all of the time. I really hope you don't have to have the replacement surgery but would that mean you would be rid of this nasty infection for good?. I am constantly waiting for mine to flair up because it hasn't been rid of properly, still in between consultants and appointments but I am not having that I have to stay in this sort of pain for good because of their negligence. Speak soon Donna xxx

     

    • melindasmakeup
      melindasmakeup donna68767

      Posted

      Hi Donna

      Yes it was due to their negligence during a wisdom tooth extraction surgery. Bacteria got in somehow. I

      I am sorry to hear about your pain. It is such a burden to carry. But I hope you will find relief soon, one way or another. Eat healthy and avoid stress!

  • Clouda
    Clouda melindasmakeup

    Posted

    Melinda, where is your osteo?  Maxilla or mandible, right or left side?

    When was your last debridement? Did they culture the tissue they took out?

    • melindasmakeup
      melindasmakeup Clouda

      Posted

      Right side mandible, yes just had a debridement in November 2014. They did culture the tissues and it was coagulate negative staph and actinomycetes
  • Clouda
    Clouda melindasmakeup

    Posted

    Why do they think you are in remission?  Are you still on antibiotics for the Actinomycetes?

    Actinomycosis can make tunnels (fistulas) through tissue and bone.  Have you ever had a conebeam scan.  It is like a ct scan but very thinned sliced so that the fistulas show up.

  • julia87346
    julia87346 melindasmakeup

    Posted

    Hi,

    I too have chronic osteomyelitis of the jaw bone, as a result of wisdom teeth removal. Luckily my infection has been put under control, though I still have sclerosing of he bone and lots of pain including nerve pain.

    Donna-I was put on tegratol for the nerve pain. It is usually given to people with epilepsy but has been used to treat trigeminal neuralgia (nerve pain of the nerve in the jaw-but I assume it can work anywhere). It assists in blocking the transmission of pain from the nerves.

    As well I was recently suggested to try hyperbaric oxygen therapy to cure the osteomyelitis as we have run out of options. I'm only 19 (had it for over a year now), so the large amounts of drugs are taking too high a toll on my body!

    I am having to wait until September to begin the treatment, but hopefully it will work!

    Good luck!!

    • melindasmakeup
      melindasmakeup julia87346

      Posted

      Hi Julia! Your story sounds identical to mine. My osteo started after wisdom teeth extraction as well. I also tried tegretol but the drowsiness was too intense for me. I tried hyperbaric oxygen treatment a few years ago with no improvement. But maybe it will work for you! I'm glad you were diagnosed early because it will be easier to get rid of it. I had my infection for 9 years before the doctors figured out what it was. So I'm still dealing with it. I've had it for 16 years now, and have been getting surgeries and medications for the last 7 years. I hope you are close to being rid of it. Have you had any debridement surgeries yet? Any picc lines? What antibiotics have you taken? And do you know what type of bacteria it is?
    • julia87346
      julia87346 melindasmakeup

      Posted

      Hi,

      Yes luckily they did catch it 'early'. I pushed and saw 3 different surgeons in 3 different countries until they all agreed and diagnosed me.

      I had 3 debridement surgeries-with the latest one having left me numb on part of my face (luckily relieved a tiny bit of the pain).

      I took clindamycin, ciprofloxecin, erythromycin, cephalexin, plus a few more that I cannot remember (also I'm allergic to penicillin and sulpha which are usually the more common antibiotics given).

      I also recommend for the pain and swelling taking simple NSAIDs (naproxen). In the USA and Canada Aleve is a good brand name! It helped reduce my swelling a lot and manage my pain better. Had to stop taking it due to the risk of long term use

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