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Anyone recovered/recovering from Osteomyelitis?

Posted , 21 users are following.

melindasmakeup
melindasmakeup

I've had five surgeries and five picc lines to treat chronic acute osteo in my lower jawbone. I still have severe pain, albeit the swelling is minimal. I am not sure if I should get more testing/x-rays done or move on to a pain management specialist. Seems like osteo specialists/infectious disease specialists aren't interested in figuring out why I'm suffering in pain still.

1 like, 60 replies

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  • denise98521
    denise98521 melindasmakeup

    Posted

    I've had my lower jaw removed,, and thought it's sometimes,, tender,, because I've a metal plate instead of a bone,, it also gets painful in a harsh cold winter,, and the cold transfer from the metal plate goes into my ears I've never had a pain like it,, I hope you get well soon,,,
    • melindasmakeup
      melindasmakeup denise98521

      Posted

      Oh my goodness Denise! How awful. If you don't mind, could you please tell me about the jaw replacement surgery? I'm trying to make a decision about what to do about this pain from the osteomyelitis. My surgeon says this is my next option and I'm terrified. Did they use bone from your femur? How long was it before you got teeth implants in the prosthetic jaw? Did the replacement surgery change the look of your face very much? I've been in such a nightmare these past 15 years. I'm ready for this to end. 

      The cold weather also affects my jaw. 

  • kelly78107
    kelly78107 melindasmakeup

    Posted

    Melinda, please take some time and look into Hyperbaric oxygen therapy for your osteomyelitis.  It has shown excellent response for this indication and may even be covered by insurance, depending on wher you live.
    • melindasmakeup
      melindasmakeup kelly78107

      Posted

      Hi Kelly 

      Yes I have tried hyperbaric oxygen treatments. Unfortunately it did not resolve the problem.

    • michael71033
      michael71033 kelly78107

      Posted

      Hey Kelly

      I have Osteomyelitis just found out today, I am thinking of Hyperbaric but my stinky Insurance wont pay for it!!!

  • Clouda
    Clouda melindasmakeup

    Posted

    I had osteomyelitis in my right maxilla.  It started in 2001.  I had so many surgeries to debride the bone and also had picc lines as well as oral antibiotics. I did 40 dives of Hyperbaric oxygen therapy. The infection ate into my sinuses.  

    In 2006 I received a fibula free-flap to rebuild my jaw. The fibula replaced the bone and they used the muscle and skin from my leg to make new gums. ( I actually grew hair in my mouth for the first year after the surgery.) I also did 30 more dives of Hyperbaric oxygen therapy.

    I now have osteomyelitis in my lower right mandible.  (Not related to my maxilla) Physicians who have looked at my scans have suggested replacing my right mandible with a 3D-printed prosthetic jaw.   You can actually get them with the teeth already attached.  It is a newer operation.

    I know another woman that had very localized osteo after a tooth extraction.  Her surgeon debrided the area and then put bone marrow from her hip into the space.  It worked and she was pain free.

    How much bone are you missing Melinda?  How many teeth have you lost?

     

    • melindasmakeup
      melindasmakeup Clouda

      Posted

      Hi Clouda!

      Wow! You have been through a lot! I really admire your bravery. I have also had many debridements and picc lines.

      Your surgery sounds so involved with the grafting . I would love to know the name of your surgeons and doctors. Where do you live? I live in California. I would also like to know more about the bone marrow replacement surgery patient. Can I email him/her? And can you email me?

      Thank you!!!

      Emis Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

      http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

  • carlgt1
    carlgt1 melindasmakeup

    Posted

    I had it in my foot (right big toe, metatarsal joint) due to proximity of the bones to a diabetic foot ulcer.  The infectious disease doc seems to think it's "cured" or at least in remission after 6 weeks of oral Augmentin/Amoxicillin antibiotics, and a few days of IV antibiotics in the hospital.  I also did 29 hyperbaric oxygen "dives" over those 6 weeks to help out the healing.  

    Osteomyelitis does seem to be an area of medicine that's more like 'voodoo' than anything else; with treatments and antibiotic regimens all over the place.  Some docs seem to think immediate amputation or removal of bone is the only way; some go for more conservative treatments such as HBOT, antibiotics, but even in this area there's a large disparity of regimens.  I feel that my own antibiotic regimen was pretty week - hence you can see the bone damage to my big toe on the X-ray (although thankfully nothing chopped off).  It seems to be 2-3 months of stronger antibiotics such as ciprofloxacin and rifampin or cipro and clindamycin are normal (so my regimen of 6 weeks of amoxicillin seems a bit week).

    Also a bone biopsy to see what the infection is caused by (ie the exact bacteria/pathogen) is very important (and also wasn't done in my case).  Blood tests for ESR (eryth. sedimentation rate) and CRP (C-Reactive Protein) are very important as well -- both for initial determination/diagnoses of osteomyelitis as well as for monitoring progress and treatment (the values of ESR and CRP in your blood should drop as the infection is being removed).

    I don't know if this applies to the jaw issues - but that has been my experience the past few months fighting osteomyelitis in my foot due to a diabetic foot ulcer!

    • melindasmakeup
      melindasmakeup carlgt1

      Posted

      Yes I have had those same blood tests in the past and they did show elevated levels in the beginning but went back to normal after a few years. I’ve also done numerous bone debridements and antibiotics and hyperbaric. Unfortunately I still have pain . Most likely nerve pain that comes and goes but usually sticks around for a couple weeks each month. Advil slightly dulls the pain but I can still feel the searing burning sensation of the damaged nerves in my right jaw near my chin
  • xxthisismelxx
    xxthisismelxx melindasmakeup

    Posted

    Hello everyone, I know it's been a while since the original post was made, but I've been researching more and found you guys.... People that can understand my pain and frustration.

    Long story short, I started having really bad mid-back pain in October. Multiple trips to the doctors, immediate care, emergency room, only for them to tell me I have a back sprain/strain. But I know my body, that's not what is wrong. So February rolls around and they finally say "well, maybe we should order some imaging". Low and behold an X-ray leading to an MRI, to a biopsy on my vertebrae. That finally gave them the diagnosis of osteomyelitis, which then messed up the height of the 2 vertebraes, then bulged 2 vertebraes below that. 

    It has been a nightmare trying to get any doctor to believe how much pain I am in, and of course no pain management specialist or neurosurgeon would touch me until the infection has cleared up.

    Had an MRI last week that showed the infection has decreased a lot since the last MRI, so that is good news, but the stupid bulged discs are what's killing me.

    UGH!! 

    • melindasmakeup
      melindasmakeup xxthisismelxx

      Posted

      I’m so sorry  mel I hope you’ve gotten some relief since you’ve posted this. I’m still struggling with nerve pain. It’s a tough journey 
  • Susie4016
    Susie4016 melindasmakeup

    Posted

    You have been through so much in your journey.

    Does this mean you are getting some answers and finally may be on the way to addressing your pain?  Thinking of you.  Susie

    • xxthisismelxx
      xxthisismelxx Susie4016

      Posted

      I'm slowly getting there, it seems like each specialist I try getting an appointment with is at least a month out. I'm in so much back pain I can only sleep an hour to an hour and a half at a time... I'm still working full-time, at an office, sitting in a chair all day and that's crappy for my back. My PCP says he "can't" give me more pain meds or higher doses or anything. Every doctor is like "try exercising more" It's painful to walk, let alone just sit and breathe.

      I'm just a whiny baby through all this I had a PICC line for 8 weeks with antibiotics, I thought that would clear everything up. Well it cleared most of the infection up, it's the discs or something causing all the pain.

    • Susie4016
      Susie4016 xxthisismelxx

      Posted

      Dr. Freymiller said all my infection is gone and will put one post back in my mouth during July.  It goes in my bone, which is a concern, but I trust him. I do think, however, that I am going to get an estimate for a partial before I put myself through that again.

      I haven't gone through half of what you have gone through.  You're not a baby.  You've had a rough time.  I'm glad most of the infection is gone.

    • melindasmakeup
      melindasmakeup Susie4016

      Posted

      Hi Susie

      I’m still having pretty severe nerve pain off an on. It seems to be hormone related for some reason. And I’ve notice stress can cause a flare too. So far physical therapy is the only thing that helps. Thanks for your message! I love the support we get here. Much more support here than Amy of the doctors I’ve seen

    • jess0548
      jess0548 melindasmakeup

      Posted

      In 2014 I was diagnosed with a low-virulence osteomyelitis infection in my maxilla.  I had 8 weeks of IV antibiotics and hyperbaric that we thought cleared up my infection.  Only it has returned very slowly and I know have those nasty oozing oral lesions again.  I have been told by ENT doctors and Infectious disease that I need another debridement and bone biopsy for an osteomyelitis infection in my maxilla.  But after seeing 5 oral surgeons, I cannot find one that will touch me because my labs are always normal!  Ugh, this is just frustrating!  I've been fighting this infection since 2014.  The pain and sleepless night definitely have a huge effect on my every day life.  

    • melindasmakeup
      melindasmakeup jess0548

      Posted

      I can’t believe your doctors aren’t doing your surgery even though you have the oozing lesions! That right there should be a huge indicator of active infection. Lab tests are VERY unreliable fpr chronic long term osteomyelitis. Nuclear bone scans are the best indicators as is the presence and persistency of swelling/fever. 

      Sometimes it’s only nerve pain from all the trauma and inflammation from surgeries. 

    • alryk
      alryk jess0548

      Posted

      I don’t know much about your situation but what’s messed up is I have read other peoples stories and this one woman had a sinus infection in the maxilla and the mri report showed lucency in the sinus and she was put on 5 months of antibiotics and it cleared hers up. Another woman had a sinus jaw infection and was on 8 months of meds. It seems that 6-8 weeks doesn’t work for anyone! 

      Did you try a holistic dentist? They believe in cavitations and and my dr is very willing to open up sites to explore. I haven’t done that yet as I am back n forth between sinus and teeth drs and the ball keeps getting thrown back n forth.  It’s a joke you can’t get help- hope you eventually get some

    • alryk
      alryk melindasmakeup

      Posted

      Do you get scans often? I have been so radiated this past few years and especially recently. What’s worse is I am still not sure what’s going on and will have to get a nuclear bone scan. Did you bounce around to different drs before you got diagnosed? Every time I go to a new dentist dr I ask if they can use the cone beam ct scan I just took and I get told they may not be able to read the disc or they want their own. It’s so frustrating! 
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