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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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  • Hawkswing
    Hawkswing melindasmakeup

    Posted

    I have had chronic osteo in my left femur, unfortuanatley my fenur broke and I had to have surgery to remove infected bone. I have had an external fixator on for last 16 month which has recentley been removed. I have grown most of the infected bone back but worry that it may recur what signs do I look for ?

     

    • xxthisismelxx
      xxthisismelxx Hawkswing

      Posted

      That's what I'm afraid of also. The chances my infection will come back.... possibly even in a different spot than it originally is.

      I asked my IDC specialist, he said it's very unlikely. But then again, it took me almost 5 months of appointment, after appointment, after appointment, for them to finally even do imaging to see what my pain is coming from.

      I really hope once the infection has ran its course thru all of our bodies, it goes away!

      Osteomyelitis has been THE MOST painful, annoying, expensive, time, energy and emotionally consuming of ANYTHING I've ever had in my life.

      Sometimes I even wish I had cancer, or some other condition. They have poked and proded me, taken blood, ran every test imaginable.... And they still don't know what strain or bug or whatever I have. So all of my treatment has been generalized.

    • Jackie235
      Jackie235 xxthisismelxx

      Posted

      Did they look into a fungal infection? Mine was a combination of a bacterial infection and a fungal infection.  I totally relate to the mental ideation of, “would I be better off with cancer?”  I asked my oral surgeon if he had as many problems with his cancer patients, in regards to regrowing bone, and he said no.  This has been such a frustrating journey and I do have a lot of fears about it coming back.  What helped was getting something that helped address my anxiety.  My worries and stress made my swelling and pain much worst, so addressing the mental health was extremely helpful.
  • chelleyah77
    chelleyah77 melindasmakeup

    Posted

    Hi Melinda,

    I am recovering from chronic severe Osteomyelitis, I had broke my fib/tib and plates were fixated, then after 3 months of complaining of feeling unwell , sick , tired and feverish , my plates broke with the bones in my leg , I had to have my 3rd surgery in severe agony , a metal rod was put down my tibia bone , swabs taken, infection of the bone from Staphylococcus and Psuedomonas bugs, I went on a PICC line for 6weeks of IV direct anti biotic treatment , then started orals for 3months , my infections have gone, however they could reoccur as the rod is resilliant to the bug because of the coating film on the rod , and my bones have not united together and ate still damaged and fragmented , which means the rod has to remain in my leg another 2 years or permanently , I don't know yet, but like you , being ignored is why I got Osteomyelitis, if They had of listened to me at the beginning it may have been at the early acute a ages , however it dwindled on and on the Drs specialty st said that it was all in mind and there was no infection they visually couldn't see one so to them they refuse to look for one which made me feel like I was losing my mind , I kept going to ER and every time they sent me home , they just made me feel like a desperate junkie asking for stronger pain killers because I couldn't stand the pain , and they wouldn't allow me endone, I was dilerious , then my plates broke 15 weeks after my initial surgeries and recovery, then I was behind the 8 ball. I know how you feel

  • jamie30365
    jamie30365 melindasmakeup

    Posted

    As a fellow osteo of the jaw sufferer, Just want to share word of encouragement & solidarity with all of you brave people. Have learned a lot from these discussion groups & that I'm not alone. Uncanny that what we should have in common; getting cured is instead insensitivity or outright dismissal by the medical establishment or delay/misdiagnosis of treatment. Maybe they make more money keeping us sick, I can't seem to make sense any other way.

  • monica22527
    monica22527 melindasmakeup

    Posted

    I really wish I’d seen your message a long time ago.   I also had osteomyelitis in my lower jaw. I had all my teeth, gums, and most bone removed in my jaw and now wear a prosthesis. I too suffer from chronic severe pain. Fortunately I have had great care by a large treatment team but continue to depend on opiates on a daily basis.   How did you get your osteo?   Where were you treated?  I wish you all the best. 
  • alryk
    alryk melindasmakeup

    Posted

    I have so many issues going on right now between my upper and lower left jaw it’s crazy. My lower jaw I am dealing with some swelling that came after a procedure I had in my upper jaw so drs don’t know how that procedure would have caused lower jaw swelling- anyway for a while now- I have at times sensitivity under the wisdom teeth area that I had removed years ago like 19 yrs ago. It tends to be like weird possibly one pain or pressure on the bone but doesn’t last long. I have areas in that side of the jaw that feel tender to touch. Along the 3 teeth. X-rays show teeth are fine. Even area where wisdom teeth it doesn’t look like any bone loss - but I know things take time to appear on X-ray. Not looking for trouble! But I don’t feel like this is normal. I had a ct scan and mri fine. Am scheduled for another mri scan then I will demand a bone scan to rule out if all comes back normal. 

    How long were you in pain before you were diagnosed? Was it years? I think you said it was... and did you go to drs and they just dismiss it? Did u lose teeth? I see you’ve had a ton of procedures and it may be either nerve pain now or if it’s not gone you may be looking at the drs taking partial bone out of jaw? I am fighting like mad to keep being taken seriously. There is a holistic dentist that deals with cavitations and I read people having infections where their old wisdom tooth was. But not so sure if that’s what it is... I feel like the swelling is area is a factor and could be something else. 

  • Jackie235
    Jackie235 melindasmakeup

    Posted

    I suffered from osteomyelitis in my lower left jaw bone and have gone through the whole round of PICC lines myself.  I’m going on surgery 13 and I would highly recommend moving on to a specialist to treat the chronic pain.  I’ve found my pain specialist to be my best ally in between surgeries.  Anytime I felt swelling or a significant increase in my pain I went back to my oral surgeon to make sure the infection had not returned. Good luck and keep advocating for yourself!  You don’t need to live in unmanageable pain, after everything you’ve gone through.
    • Teresamarie
      Teresamarie Jackie235

      Posted

      Hi

      Yes I’m new to the group so here goes...

      I was diagnosed with osteomyelitis 6 weeks ago. The culture turned out to be actinomycetes odontological.  It all started with an extraction of tooth 30 in the lower jaw.  After several rounds of antibiotics and debridments the oral surgeon finally sent me to an ID doctor.  Within  three days I was scanned, had surgery with Maximo facial specialist in the hospital setting where they did the cultures of bone and tissue. 

      I started iv Invanz and am now almost finished with 6 weeks of daily iv. Monday I see my ID Doctor, Maxiofacial doctor, and pain management doctor. 

      My question is how do I know if the infection is now to the point I only need the oral antibiotics (ID doctor says for at least 6 months) or stay on infusions? My jar is still very sore in one spot .....  Your ideas are most welcome.

      ~Teresamarie

    • alryk
      alryk Teresamarie

      Posted

      How long did it take to get diagnosed? Was it an obvious infection where the drs took you seriously?
    • Teresamarie
      Teresamarie alryk

      Posted

      The original oral surgeon just felt it was an infection. Once I saw the maxiofacial doc he immediately felt it was osteomyelitis. ID doctor concurred. I had a ct which also suggested osteomyelitis. After reading the reports here I feel lucky, I was taken seriously once I saw the specialist.

      There was a big lump in my jaw on the tongue side that had pus draining out of it. During surgery they excised the lump ,debriefed, etc. Hurt like all get out. So, all in all I’ve been dealing with this since April 20, 2018.

    • xxthisismelxx
      xxthisismelxx alryk

      Posted

      I had osteomyelitis in my spine, it took my drs almost 6 months to diagnose my condition
    • alryk
      alryk Teresamarie

      Posted

      Ok- I had a tooth extracted and I feel terrible above the extraction site and it’s been 7 weeks since I had it pulled. Because it’s healing nicely no one thinks there’s an issue. I did not have the symptoms you had. I have pain and swelling. Had a recent dental CT scan and it looked fine and had an MRI yesterday and am awaiting results. It sounds like you got your diagnosis in the acute stage which is good! 
    • Teresamarie
      Teresamarie alryk

      Posted

      Yes. They got it in the acute stage so far. Now the test will be once I’m off iv and onto oral.

      What was prescribed for you? This is all so new and scary for me....

    • Teresamarie
      Teresamarie xxthisismelxx

      Posted

      Hi, my goodness osteomyelitis in your spine? Yikes! Did you have surgery? Since I’ve had this infection my right hip has been very painful when I put weight on it. Could that be another area of osteomyelitis?
    • alryk
      alryk Teresamarie

      Posted

      I have not been diagnosed yet. I have tried to seek advice from others as I am scared that I do have osteo. I have a couple of areas in my face that have pain and swelling. Been passed back and forth from ent and dentist. Not being on proper treatment. Pain getting worse. It’s not easy to get diagnosed if you do not have the obvious symptoms. I have had scans and mri’s. Just had my second one yesterday. Next will be nuclear scan. It is very scary! Had a tooth out recently and it made things worse! I was on 2 rounds of meds no help. I am disgusted with this situation. I hope all will be ok. 
    • Jackie235
      Jackie235 Teresamarie

      Posted

      Hi Teresamarie,

      My osteomyelitis developed  sometime after I had a tooth abscess on molar #17, which was extracted (Back most molar on lower left side) it took about a year for it to develope into osteomyelitis and I was on and off oral antibiotics.  During this time I had an abscessed tonsil removed as well and eventually 3 other teeth (18, 19, and 20 and most of my lower left jaw) what finally cured the osteomyelitis and infection was IV ertapenem and daptomyocin, and an anti-fungal medication I took for a month ( I was on IV antibiotics for two months) they took me off all antibiotics for 6 weeks and then took cultures to see if the infection was gone.  It is normal to be on some form of antibiotic for 6months-1year after you are cleared of osteomyelitis.  The key to my recovery was to be my own advocate.  Anytime I had swelling occur, or escalated levels of pain I would goto the ER at the hospital where my oral surgeon worked and made sure nothing else needed to be changed in my antiobiotic regimen.  Trust your oral surgeon and ID doc, and just make sure to contact them if you have any changes.  Best of luck!

    • Teresamarie
      Teresamarie Jackie235

      Posted

      Hi Dana

      Thank you for your kind words and explanation of where you are. You must have been out of your mind! I’ve only been dealing with this horrible infection for four months and have only one tooth involved.  I will keep your advice of being an advocate for myself. Right now I feel there is still infection in my jaw.....it hurts to touch the side where they took off  a mass on my jaw. 

      Could this infection have spread to my hip? That is so painful since this infection started?

    • Jackie235
      Jackie235 Teresamarie

      Posted

      I’m sorry you’re having pain in another area,  and I don’t know if those two are connected rolleyes I’ve only had problems in my jaw.   It’s good to follow up with a general doctor while going through surgeries  in case anything else comes up!
    • denise98521
      denise98521 Jackie235

      Posted

      Hi could you tell me what is osteomyelitis

      I've had my lower jawbone removed due to dental pin infection but was told it was a staphylococcus but from what I see here I have these symptoms please advise as I believe I'm not being treated property by doctors in my area

    • Jackie235
      Jackie235 denise98521

      Posted

      Osteomyelitis is an infection that has spread to the bone.  Mine spread from an abscess tooth into the bone of my lower jaw.  Are you looking into malpractice? It was my Endodontist that told me to go see an oral surgeon and that was the person who debrised my jaw.  This includes scraping out all badly infected bone, and then I was put on a PICC line, IV antibiotics for a few months to get rid off the infection.  Does that help?
    • denise98521
      denise98521 Jackie235

      Posted

      Yes dana I've also realised I've misunderstood my surgeon as I thought he said I'd now suffer from mysto porosis??

      But I'm sure I've misunderstood him??

    • denise98521
      denise98521 Jackie235

      Posted

      Thank you dana I'll get on it today as I also have a hip problem since surgery on jaw, constantly in pain with headaches as my jaw was altered they put in a metal plate but removed all gums teeth and now I've false teeth that I can only eat soft food mostly I now drink my food

    • Jackie235
      Jackie235 denise98521

      Posted

      Denise,

      That sounds extremely uncomfortable.  Did you say that they removed your entire lower jaw? I’m interested in how they have already equipped your mouth with false teeth! What is it like? How is your jaw-alignment?  If your bite is off that could be causing the headaches.  What a journey. I’m so sorry, that sounds very scary.  You can always get a second opinion.  I wasn’t having much success with my first oral surgeon, so I went to another who turned out to be a better fit for me.  It’s very important to trust your doctor, and if you feel this is not the case you have the right to get another referral to a different oral surgeon.  Sounds like you’re a realist and just want a solution to improve your quality of living.  You have every right to this.

    • Teresamarie
      Teresamarie Jackie235

      Posted

      Just saw my oral surgeon who felt everything looked goo with my jaw!!!! Yeah!!! N ext I see my ID doctor. I’m going in with crossed fingers that PIC line comes out today.  The doctors feel that the infection is not in hip but ordered ultrasound and scan.

      Hopefully I’ll be able to get on oral antibiotics now!  💊

    • denise98521
      denise98521 Teresamarie

      Posted

      When I saw the comment ability hip it shook me as I have a pain there, going to see doctors this week
    • Teresamarie
      Teresamarie denise98521

      Posted

      Well my PICC line is out and I’m now on oral antibiotics for at least six months to one year.  I’m taking pen vk 500 mg 4 times a day.  My fingers are crossed 🤞 hoping for a good outcome.

      My hip is still painful 😖 but will be looked at Thursday. All the docs felt my hip pain has no relevance to the osteomyelitis. I sure hope they are right!

      Along with this  I have adrenaline insufficiency and now my thyroid is acting up. Anyone else have a thyroid problem?

      Wishing all those out there with this horrible pain may have a moment of peace.

      Teresamarie

    • mike90353
      mike90353 xxthisismelxx

      Posted

      Hi I also had it in my spine and was not diagnosed right away either, I was sent home from the emergency room after they gave  me morphine and the physicians assistant chalked it up to favoring one knee over the other since I just had surgery in one. The next day I was taken back by ambulance and tests were done showing my white cell count up and my temp. What was your outcome?
    • denise98521
      denise98521 mike90353

      Posted

      My doctor refuse to even take me seriously I now have back hip an knee problem they keep saying it is ware and tare due to age won't even send me for scan, they did rescan my scull recently " to protect themselves but I'm left in constant pain

      I'm fighting for help can't beat the system??? But I'm going this week to insist!an no is an will not be accepted by me hope you are OK my whole lower jawbone removed now have to drink my food can't eat lost 28 lbs now at less than 6stone I'm a tall woman 5'7"

    • mike90353
      mike90353 denise98521

      Posted

      Do you think the jaw infection was related to the back, hip and knee pain?
    • jess0548
      jess0548 denise98521

      Posted

      I'm so sorry about everything you have gone through.  It sounds very similar to all of my struggles.  I'm calling my orthopedic surgeon about my hip again today.  This all started in my jaw 4 years ago, but I also have a hip replacement.  My hip pain started during a high fever before I was officially diagnosed with osteomyelitis of my jaw / maxilla.  After several scans, and draws from my swollen hip replacement which only showed elevated white blood count.  My doctors keep scratching their heads and sending me to physical therapy.  Last week I threw my back out and my physical therapist said it is all due to my bad, swollen hip.  I'm demanding another draw this week, it is pitiful that we have to fight so much just to get heard.  I've been slowly watching my hip get worse for years, but I keep being told, you don't want an infection in your hip.  You are right I don't want it, but there is something going on that is causing extreme pain and swelling.  I'm so tired of having to fight to get treatment.  I hope my Dr listens today, don't think I can handle another 6 months of this hip pain.  

    • denise98521
      denise98521 jess0548

      Posted

      After seeing this I am going to insist on a scan of hip knee, so sorry your in such pain I've been trying for 12 year to tell my doctor but to no avail the pain is so off the chart

      And no will listen to me other than my oral surgeon

      Hopefully you get a decent outcome

    • denise98521
      denise98521

      Posted

      Ps I've been sent to dietitian, physical therapy, everyone except a bone man, go figure??? I'm lost as what to do next

    • denise98521
      denise98521 mike90353

      Posted

      I believe this to be in my opinion! But getting someone to listen has been a dang nightmare
    • jess0548
      jess0548 denise98521

      Posted

      I wish I could get you into a good bone doctor to get your hip evaluated ASAP, but my doctors aren't listening to me either. 

      What I've found out is my osteomyelitis is a low-virulence infection.  It takes forever for it to reach a point where it actually shows up on exams.   A year ago my orthopedic surgeon sent me to physical therapy scratching his head at my pain and swelling, and said if I still have pain he would consider a new fluid aspiration in 6 months to a year.  Last hip fluid aspiration showed my white blood count was elevated at 4xs the normal rate, but it did not grow any cultures. 

       Well it's a been a year and my swelling and pain have only increased to the point I need a cane to walk, all while going to weekly physical therapy sessions. I even went for a second opinion and they sent me right back to my original orthopedic surgeon because my case was too complicated for them. 

      I hope you keep fighting until someone takes your pain seriously.   It's so very tiring being in extreme pain, but hitting brick wall after brick wall when asking for help.  Good luck!!!

    • denise98521
      denise98521 jess0548

      Posted

      Like you I'm at physio, dietitian, and my blood white count up but keep telling me it's because I'm vegan?!! Seriously the hospital said I'm the most ill person with the best oxygen levels in my blood so he was very confused he's looking for anyone anywhere with my symptoms, but my hip and knee never hurt till I got this dang virus thank you for your kind words I don't understand why our medical people can't see it last year I couldn't get off the floor for 7month's also had fever all that time could not keep food down,

      Went down to less than 60 lbs I'm 5'7" and should be at least 130 and that's still skinny

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