Jaw osteomyelitis

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.

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.

I'm having the same issues in extreme pain . Are you in the uk ?