Help? I'm new here and I'm losing my mind over this osteomyelitis. My infection started in May this year after my hyoid and tongue suspension surgery. I suffered with months of oral antibiotics and pus drainage before they finally did surgery to scrape the infection off my jaw bone and remove scar tissue. I was put on 10 weeks of two different antibiotics by Picc Line, Hyperbaric Oxygen, and wound debridement. My doctor noted that my infection marker in lab work was elevated but chooses to take the wait two weeks and recheck. In the mean time my jaw hurts to touch. Any encouragement would be appreciated.
I have been there....2013.
Morphine sulfate extended release 15 mg
frozen gel packs, four of them...stay frozen longer, no drip, smooth rather than pointy
Gentle hug
Been there, feel your pain!! I've had in my upper jaw from botched dental surgery since 2013. So far 4 surgeries, last was 2 wks ago & PICC line in currently. Many courses of oral antibiotics & HBOT helped, but infection came back. Sounds like your Dr's are doing all the right things, you are lucky! I was misdiagnosed for 1.5 yrs & suffered SO much pain & frustration. Hav not been able to work..turned my life upside down.
Osteomyelitis is VERY challenging to treat even in otherwise healthy people. I'm in constant pain, now on pain management w/extended release & short acting pain meds. Make sure you get pain meds as needed to cope/sleep. I'm not gonna sugar coat it, osteomyelitis is an unpredictable bone disease, you may be lucky & get remission soon, or struggle for a long time like me. It takes a lot of patience & support from family & friends. Educate yourself & you must be proactive & advocate for yourself to get proper treatment. Dr's often disregarded me because I'm otherwise healthy, look ok & labs in normal range.
Hang in there! Eat healthy food & stay positive. Talk to friends when u feel down. I was not religious previously, but am now due to this suffering & adversity. Prayer/meditation helps me when I feel overwhelmed. Don't hesitate to reach out. I'll pray for you.
Jamie
Thanks for the prayers. I will pray for you also. I'm 48 and this all started from having surgery and thankfully that was how my diagnosis came so quick.
I also had to quit work because of the Picc Line and still going 2 hours a day to the hyperbaric oxygen chamber. Now that the Picc Line was taken out two weeks ago the jaw pain has returned strong.
I called my doctor today to get an appointment for a follow up. The original nuclear Scan was inconclusive so they are making me an appointment the same day for what ever the follow up Scan is to an inconclusive Nuclear scan. I also had blood work that showed a high inflammation level.
It is terrible to know that others are also suffering with this disease yet it does bring some comfort to know I'm not alone. Friends and family suffer the consequences of me having this disease and the surgeries that come with it but they don't truly understand the frustration.
Thanks for replying Jamie30365.
Hi Rebecca,
I am so sorry to read about your experiences due to this persistent and painful condition osteomyelitis. My daughter has been suffering since the age of 15, due to a an orthodontic issue which then followed infection which her dentist initially failed to,pick up on until the apparent swelling in her lower mandible suggested an emergency appointment to the Maxillofacial Dept. We are in Scotland and she was sent a hospital in the Monklands area.
The team at her hospital acted immediately on her first debridement followed by intravenous antibiotics and followed up by oral. We were lucky enough to get a reprieve from June 2014 until Dec 2015. Thereafter the severe pain came back in full force. Her consultant suggested a second debridement in Feb 2016 . He also carried out a reconturing of her jaw as the previous infection had left her face asymmetrical.
During this operation the nerve leading to her lower lip was compromised and the team did aim to repair the nerve there and then. I cannot fault the maxillofacial team as they did there ultimate best to reshape my daughter' s jaw.
The time in theatre and the wide opening of the jaw, caused my daughter severe discomfort as well as the numbness, burning and tingling sensation in her lip and lower area. She remained in hospital for two weeks on intravenous drugs followed by an out-patient lesson on IV . My daughter attends university 3 hours away from home, she had to have an IV line and use it each night after uni. She had 6 weeks of Ceftriaxone, oral doxycycline and Clindimycin. My daughter struggled through uni, she was constantly exhausted as she was borderline anemic. The infection and antibiotics compromised her blood count.
Unfortunately, the pain and constant discomfort never ceased this time. The pain continued on and off until the July. After x rays and CT scans the bone was not looking good and the soft tissue was inflamed.
The next option was Steriods to slow down the immune system. The reasoning for this was that something was triggering the immune system!! Thankfully, for the first time in a long time my daughter was pain free! Her whole demeaner was happy and lighter. The constant battle of fighting pain and working through it can take its toll on your whole outlook.
Today was a good day! We had an X-ray which showed that the bone looked less porous and more dense. The inflammation was down, there is more sensation in my daughter's lip. At times, if my daughter is overtired, stress or it is cold then her jaw starts to niggle. She ensures she has plenty sleep, she tries to eat a healthy diet ( low sugar).
We are not under any illusion that the infection has gone for good, but while things are better , my daughter is so appreciative of a pain free chapter and is embracing life.
For all suffers of this chronic condition please keep sharing all your stories, it has helped me as a parent through some dark days. I just live in hope that perhaps there will be some progress in treatments.
Thank you Rebecca for sharing
I am sorry to hear your daughter going through this at such a young age.
My second nuke scan showed that my jaw is in the healing process yet still hurts to touch and is tingling. It is scary to note that this disease can and usually is reaccuring.
I am just taking it one day at a time.
I am still suffering major fatigue and I literally sleep 16 hours a day.
In a week and a half I will have my different surgery for sleep apnea where they will only use sutures instead of a suspension device.
Then I will know if my fatigue is infection or lack of sleep related.
I am praying for your daughter.
I'm so sorry you are in pain. I totally understand the feeling. I've had osteomyelitis in my jaw too. For over ten years unfortunately. The doctors didn't catch it early enough so it got out of hand and I have been struggling with it for over 10 years now. You're very lucky to have it treated as soon as you did otherwise you could be in for a long haul. Stay away from sugary foods chewy foods and anything that could raise or inflammation levels. Toxic stress will make it worse, stay positive and focus on relaxing and taking care of yourself. Sounds like your doctor has a solid treatment plan in place for you. I've done hyperbaric and picc lines as well. I've had five debridement surgeries.
Not sure where you live, but if you are near Indianapolis, contact Dr. William Adams. He is an endodontist. He did surgery on my jaw (bone graft) for osteomyelitis of the bottom right jaw bone. First he does debridment to remove all the crumbled bone. Then he does the bone graft. He combined cadavar bone with my plasma to form a paste which is packed in the place of where my crumbled bone was. Over time it grows back and is healthy. I was put on nerve blockers for pain which worked wonders. Good Luck to you!
II just recently had surgery performed by Dr. William Adams for osteomyletiis of the jaw bone for the lower front mandible with a bone graft. Can I ask what your recovery was like each week afterwards as far as pain, throbbing of incision areas and spots where they removed the infected bone and inserted the bone graft? What nerve blocker for pain did he give you that worked? I'm having trouble managing it. No one else I talk to seems to know anything about this type of problem/surgery. I live in the Indy area as well. I'd welcome any and all information. It would be great to have some additional support from someone locally who went through exactly what I'm experiencing. Hope to hear from you.
I am so sorry that you are going through this. I hope you have a great supportive family/friends.
I did not have to have a graph of the bone. They were able to scrape the infection off the bone. The surgeon scraped until he came to healthy bone that bled.
The recovery was extremely painful even with taking percaset (sp), building a tolerance to that and then to Norco.
It has been five months and it still hurts, yet the Nuclear Scan showed no infection.
Even though it still hurts to touch I can lightly rub my finger along my jaw and feel where the indentation is.
I live in Alabama.
I also have a chin now that looks horrendous from all the surgeries and incisions bursting open. I see a plastic surgeon next week to see if there is anyway to make my neck and chin look normal again.
I don't know if this helped in any way but I will be supporting for you and try to answer and Questions you have or just be here if you need to scream, shout, and vent because we all need that someone who even remotely understands what we went through.
P.S. - Antibiotics can also cause fatigue, kind of like chemo does & will take time for body to recover. Take a good quality probiotic is essential, I think at least twice as long as however long you took antibiotics.
Sorry, that last reply was to an earlier reply that didn't go thru for some reason. What I wrote was that I too had some very painful recoveries, tolerance issues to meds & post-op pain many months after. In my case due to infection.
Take negative nuclear bone scan w/grain of salt; 30% are false negative as in my case & friend who has necrotic lesion in her lower jaw. Jaw bone apparently had poor tracer uptake.
Probably good you didn't have graft, less chance for secondary infection (as in my case). Graft material provides a substrate for infection to grow & evade body's defenses & antibiotics to reach. The mandible is also less vascularized than upper jaw which increases those problems. My last graft was synthetic (Novabone), not sure if it's failed yet. My previous failed graft(s) was combo of cadaver & bovine. Multiple surgeons have told me these materials are cheap & not good. A 95 yr old dead person's bone doesn't seem like it should be surgical material. A person's own bone is best, but is secondary surgery site w/risk of complications. I haven't had this yet, but if my current graft fails, it's my nxt option.
I've also battled extreme fatigue, pain & body aches at varying degrees. Treatment always helps to an extent, but always comes back in relation to infection. Best improvement I've had was after last surgery in November along w/10 wks of IV antibiotics.
I'd hold off from any reconstructive surgery till you're pain free, IMHO. Hang in there, this is a tough disease, unlike cancer (thankfull I don't have) you don't get much sympathy in general or understanding/coordinated care from the medical establishment. I've been treated at a world renown hospital, seen top specialists in the field & it's been an uphill battle most of the time.
It's taken a major toll on my life (can't work or purse personal relationships) and so far taken 4 yrs of my life. I try to remind myself it could be much worse, but the constant pain, up's & downs of failed surgeries can take a toll. My faith is only thing that's gotten me thru, especially after my mom passed in Dec, day before Christmas.
Hang in there & God bless 
Jamie
I just thought of something.
I did 40, 2 hour sessions in a hyperbaric oxygen chamber for osteomyelitis.
I started that when I still had a Picc Line.
Has that been mentioned to you at all?
Obviously I can't say if that was the reason I recovered quickly but after all you've been through I would look into that option.
I'll be praying for you.
Thxs, I already did 60 dives of HBOT last yr, albeit while on oral antibiotics not IV (should have been on IV in retrospect, but that's another screw-up by my doctors). Even if I had it probably wouldn't have worked either since the infection had already become chronic due to lack of timely diagnosis. This last round of IV I asked both my surgeon & ID doc to authorize more HBOT, but they didn't think it was needed. Funny how they can't explain why I still hav pain either. It's a miracle I even got IV antibiotics, it literally took months of me bugging all my doctors & changing doctors until I got traction. The only treatment for osteomyelitis is surgery & antibiotics, and I've just done both. I still have pain & no doubt in my mind I still have infection, but no doctor will authorize any treatment while I'm subclinical.
Trying an alternative/unorthodox treatment now, nothing to lose. Praying it works.
Call me. I left u my number.
Thanks Pat, I appreciate it!
I'm interested in learning more about the hyperbaric oxygen chamber. How long after you had surgery did you begin doing the 40 sessions? What kind of doctor did your surgery and I assume he/she also gave you the Picc Line and sent you to do the hyperbaric oxygen chamber sessions? Did insurance cover the hyperbaric oxygen treatments? I'm a little over 5 weeks post op and am having pain, more burning at times, that seems to move around some from the incisions on outer gums vertically or just under my front teeth. I wonder why some doctors do really strong oral antibiotics and others do the Picc Line.
Did you end up seeing a plastic surgeon about your chin? I did have a cadaver bone graft, so my chin is very tender and itches a bit at times. I was just curious if you would have had a graft if your chin would not have an indention. My doctor told me not to touch my chin to let the nerve endings and new bone regenerate to the bone graft, so I only lightly scratch it if really necessary.
Are you still experiencing pain? If so, do you think its the infection that has returned or nerve pain related or .....? It sounds like you believe the hyperbaric oxygen chamber really helped your recovery. I'm interested in learning anything that can help me out. I go back to my doctor for a follow-up next week and am gathering my questions.
I hope you got some answers from the plastic surgeon. Prayers to you and everyone going through osteomyelitis.
With your graft that failed, did you run a fever or what determined it didn't work? How long after surgery did you know it failed? It stinks having to wait 6 months to see if it took or not. Just trying to gather info, knowledge is power.
Prayers for you and everyone else with osteomyelitis.
Michele
A lot has happened since I last posted.
My doctor is an ENT and the Picc Line was done on his orders along side infectious disease doctors. He did not order the HBO treatments. My home health care was the one that recommended the would center because the incision was not healing. It was my would care doctor who recommended HBO. My ENT never once mentioned that that was an option for me. Some insurance companies cover this while others don't. There are five criteria that need to be met to be able to use the chamber. I met them all but my insurance wouldn't cover it so the would care director allowed me to do it at no cost to me.
I did see the plastic surgeon but he would not do anything for six months. Then he said I would still be in pain for the rest of my live.
I also had the revised hyoid surgery and I was over the top excited because it worked, but three weeks post op I had to go to the ER and have the infection drained and was admitted for three days of IV antibiotics and sent home with two oral antibiotics. So now I have to pack the hole they made to drain things and follow up in a week. If it is still infected then I'll be back on a Picc Line.
I'm not sure what determines oral vs IV antibiotics though.
I think my pain in my jaw is nerves and even though it still hurts the pain has lessened some.
I hope this has helped.
Never had a fever, ever even with a post-op Enterobacter +4 infection w/puss oozing out of my gums. Classic osteomyelitis presents with no fever, normal blood work, this is why it's frequently undiagnosed till chronic. I've been dealing w/this for 4+ yrs, most doctors are morons. There is no standard treatment protocol, it's basically voodoo medicine where they end up chasing symptoms. That's why my advice was to get to a hospital w/ID & OS, best chance you would get HBOT. You should hav had w/Osteomyelitis in mandible, major oversight by your surgeon. Sorry to sound harsh, but I think using cadaver bone graft is crazy & even worse to put in a mandible w/osteomyelitis! These doctors do stupid things & we pay the price. WISH I knew then what I know now, which is not trusting these doctors know what they're doing.
After 5 wks you shouldn't hav much pain, that BS your Dr told u about "nerves regenerating" is what they all say to appease u. Mine said same to me. I'd get post-op CT scan STAT if u don't hav & get 4 other opinions. Voice your strong concern graft is infected/osteomyelitis refractory, ask about a bone biopsy w/culture & PCR if culture negative and/or nuclear bone scan (not while on antibiotics) in 30 days if symptomatic, basically rule out infected graft. Devascularized graft is a growth substrate for biofilm formation by 6mo, leading to eventual graft failure. Dr will likely balk at this. Most scans & all other diagnostic tools don't show infection despite what most doctors tell you.
I knew something was wrong after 6 wks post op, stupid Dr kept telling me everything was normal & the usual BS to get rid of me, like "give it time to heal". Unless u hav a fever or puss oozing out of your head they think all good. 6 mo later was told everything was normal, despite my complaints of pain, all the while osteomyelitis was happening & late diagnosis why it's been so difficult to cure. It took 1.5 yrs later & 20 different surgeons to finally properly diagnose me w/osteomyelitis after telling everyone I had an infection & them telling me I was fine. So yes, they are morons, even the so called "top" specialist. A head & neck surgeon of all specialists diagnosed me, took him 10sec., he's my hero. I knew the graft failed after 6 mo because i could feel it, but it's virtually impossible to get them to remove something they are all to happy to put in.
Sorry to be so negative, but it's true to my experience. I hav no more patience for their incompetence. I've had to fight doctors & insurance companies for 4 yrs, it's hell.
If you feel something's not right, really assert yourself & listen to your gut instinct even when doctors tell you otherwise. You know your body best.