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.
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,,,
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.
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.
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?
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!!!
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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!
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!!
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
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.
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.
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 ?
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.
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
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.
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.
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.
Hi Kelly
Yes I have tried hyperbaric oxygen treatments. Unfortunately it did not resolve the problem.
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
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