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osteonecrosis of the jaw

Loriwithgod
Loriwithgod Member Posts: 7

I have just found out that I have osteonecrosis of the jaw due to my Zometa infusions. I am currently taking pain killers, antibiotics and oral rinse. I'm having a hard time finding an oral surgeon who will see me. I'm curious about people's experience with this diagnosis, if treatment has been effective, and what interventions were used.

Comments

  • lw422
    lw422 Member Posts: 1,375

    Sorry that you have to deal with this, Lori. I have no experience with it but there are several pages of posts when I search for osteonecrosis. Here are the search results so you can see what others have had to say... https://community.breastcancer.org/posts/search?utf8=%E2%9C%93&search_builder%5Bkeyword%5D=osteonecrosis+of+the+jaw&search_builder%5Bauthor%5D=&search_builder%5Bsource%5D=&search_builder%5Bdate_range%5D=&commit=Search Good luck to you.

  • maggie15
    maggie15 Member Posts: 762

    I had osteomyelitis of the jaw rather than osteonecrosis (confirmed by bone biopsy) but also had trouble finding an oral surgeon to treat me. The endodontist who discovered my jawbone problem had his staff call oral surgeons asking for referrals. The surgeon who agreed to take me had an office an hour away. I also had to travel to his hospital nearly two hours away for some imaging and IV antibiotics (I live in the boonies.) Maybe your dentist, MO or PCP office staff could phone oral surgeons since they are more likely to refer another surgeon to a medical professional than to a patient. Also, check out the websites of any hospitals in the vicinity to see which oral and maxillofacial surgeons are on staff. My doctor also operated in the hospital on accident victims who had injured their teeth and jaws.

    Many oral surgeons make a good living doing extractions and implants so they don't have to deal with anything they would rather not. Also, the insurance is a pain to file since some parts of treatment are covered by dental and some by medical. I lost a few teeth and had my jawbone debrided to remove the infected bone, but I now have a bridge, look normal, and have a pain-free jaw.

    Hopefully someone else can tell you about the treatment for necrosis which, as far as I understand, is less extreme than for myelitis but takes longer. I hope you can find an oral surgeon soon and get some relief.

  • amontro
    amontro Member Posts: 184

    lori -

    If you have the time, you may want to search for my posts and threads regarding my bout with osteonecrosis.

    After being diagnosed in 2008 with Stage 4, I went on zometa in 2009 continuously through 2018. I started out with an ulcer in the roof of my mouth which later displayed a bone sticking through. After many painful progressions, I stopped the zometa in 2018 because I had difficulties and pain in my lower left jaw including inflammation of the tongue. I could not find a dental surgeon who would even touch my osteonecrosis, but I pushed forward and made many calls. Finally, I was accepted at Yale New Haven Dental here in Connecticut. They have attended me all this time and have helped me with the excruciating pains that I had been experiencing. Two months ago, my last bone fell out and I hope that is the last of it. I have an appointment with Yale day after Labor Day. They have kept monitoring me all this time and will continue to do so. The bones pop up when you least expect it.

    At the onset in 2018, oral surgeons told me that the "bones" would fall out on their own. As a matter of fact, I was so desperate and in pain that I saw an Infectious Disease Specialist. She had no experience with osteonecrosis, but she prescribed antibiotics for the inflammation and monitored me for almost a year.

    As Maggie wrote, you may have to research hospitals in your area that can support you.

    One of the home treatments that Yale first suggested is they prescribed Lidocaine which I put on a folded gauze square, and put it over the affected area so that it doesn't touch the tongue. It's tremendous relief with the pain.

    - Anna

  • fredntan
    fredntan Member Posts: 237

    hi

    I went through ONJ many years ago...i started a fb group for us....i really think its time for a dot.org...


    Bigger cancer centers and dental schools have oral surgeons experienced in ONJ.

    Conservative treatment is best or worked for me...ive found some great docs..i will send you a pm...call me

  • Loriwithgod
    Loriwithgod Member Posts: 7

    thank you. I asked my dentist if he had ever had a patient with it and he said he had not seen a person with ONJ since dental school. It's been two weeks of phone calls and I have still not found a Dr. to schedule an appointment with. One seems to be giving me the run around. So frustrating!!

  • amontro
    amontro Member Posts: 184

    lori -

    I hear you loud and clear. You would think it's the dark ages because they won't own up to osteonecrosis brought on by a drug.

    Keep pushing it. The more you try and put yourself out there, the sooner help will arrive.

    I've been on this roller coaster a long time and I know that faith will help you through it. You will finally find someone who can help.

    Bring up the subject every chance that you get.

    Love,

    Anna

  • XfitMama2
    XfitMama2 Member Posts: 18

    hi all.

    I’m so sorry you all have had to deal with this issue. It’s actually one of my fears and why I’m reluctant to start Zometa. Would you mind sharing what you think brought on the ONJ, ie. Did you have an oral surgery or prior dental issues?


    thanks so much

  • Loriwithgod
    Loriwithgod Member Posts: 7

    xfitmama2 My Dr. told me it was a perfect storm, I was on Zometa and also Afinitor (part of a clinical trial I was on). She thinks the Afinitor boosted my chances along with what she called "winning the unlottery". I have had no mouth trauma/dental issues but I horribly grind my teeth and was in between night guards (long story). I have bone exposed on each side of my jaw right at the roots of my grinding teeth. So now I am off the Zometa and honestly, I think that is the part that worries me the most. Zometa is a good thing. The chances of getting OMJ are so slim. It's like 1% from what I have read. The Zometa helps to strengthen the bones. That is important!!! Odds are that you will not get OMJ. But some few unlucky people do. If I was a gambling woman I would take the Zometa.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,641

    I have never had ONJ so I have no personal experience. I understand that some believe the incidence rate is higher than 1% and it may be but it is still a low incident side effect.That being said, you have to decide if the benefits of this class of drugs are worth the small chance of ONJ. I was on an older bone strengthener for about 3 years and then stopped when recommended to by my mo. Even if the adverse incidence rate was quadrupled to 4% or even 5%, it’s still low.

  • XfitMama2
    XfitMama2 Member Posts: 18

    these are great points. My MO recommended Zometa for both the bones and for reducing risk of bone mets. It’s the later that motivates me most

    Lori- I’m so sorry your dealing with this, Sending healing wishes to you.

    Ps: just got my night guard made for this very reason.

  • weninwi
    weninwi Member Posts: 745

    Lori,

    I've been on Zometa every 3-4 months x 3+ years and my MO recently extended the interval to every 6 months. On the advice of a dental hygienist, I saw a periodontist BEFORE starting Zometa. I have 3 dental implants that were found to have silent periodontal disease that I was completely unaware of. I've been able to keep the pocket depth under control with twice daily irrigation with a water pic and every 3 month cleaning at the periodontal office, but recently I developed an ulcer on the inner lower jaw. My periodontist says the tissue there is thin and thus vulnerable to breaking down and developing bone necrosis. My periodontist Rx'd chlorhexidine twice daily (I applied it with a q-tip rather than as a rinse because it stains teeth) - wait 30 minutes then use the anti-oxidant product AO Provantage (available on Amazon). Thankfully the ulcer healed in a couple of days, but my periodontist said if it didn't heal there was hyperbaric treatment. At least that was my understanding, but I didn't question her further on the details. If I ever develop bone necrosis I would insist that my periodontist and MO be in close communication.

    Wendy

  • fredntan
    fredntan Member Posts: 237

    what area of the country are you in?

    I can search in the fb group to seeif any pop up.

    Look at the dental schools and or bigger cancer centers....you want to see a Oral and maxillary surgeon there....


    You can also use the free corporate angel flights to fly to one....my doc uses plasma to help it heal...


    The fb group is called

    Living with Osteonecrosis of Jaw


    2 days after my dead bone lifted off i saw the doc that explained what happened...


    Dr Dennis Abbott...he formed a sub specialty...oncology dental...he said trauma had caused a break in mucousa of mouth....germs got in....this caused bone death...the dead bone had to grow itself out of my jaw...took over a year

    Ive been off my bone drug many years now...going into 10th year with MBC in oct!

    I walk a lot to try and keep my bones strong...so far so good

  • weninwi
    weninwi Member Posts: 745

    fredntan,

    Thank you for these details on your experience dealing with osteonecrosis of the jaw.

    Wendy

  • vlnrph
    vlnrph Member Posts: 474

    bumping