Hi Liz,I have read your message and really sympathise, but it sounds like you have a good team at the hospital. An important thing to ask here is do you have any loss of sensation in your face or jaw. Wishing you well
Hi again Liz,
I get honey from a local bee keeper and he told me to try and put some on the affected area, it isn’t easy and I usually ended up swilling it around my mouth! I’m sure you know this but just keep your mouth as clean as possible, I only cleaned my teeth twice, occasionally 3 times, a day but I would regularly use saltwater to rinse my mouth. My Max Fax team said main reason they thought mine healed was that I didn’t get any further infections after the one which turned out not to be a blocked saliva gland. After all the courses of antibiotics I’d had I really think my gut was wrecked and the bacteria needed replenishing. I’d definitely recommend Kefir, it’s so easy to do yourself but many supermarkets sell it now, and you can get it at most Polish shops. I make my own because I avoid cow dairy as much as I can, and make it with goat milk.
Let us know how you’ getting on,
Oh thank you for sharing your experience with ONJ, it does seem there are quite a few similarities and reading your situation it does seem there is hope. I’ll start on pre and post probiotics immediately. I’ve also bought some high quality manuka honey to try to leverage its antibacterial properties.
i will read other ONJ threads and hopefully green other tips in relation to treatment.
once again thank you for your response.
Sorry to read you’re going through this!
I don’t know if you’ve read any other threads about ONJ? I had dental work done, all healed and was well for 8-9 months and then I spontaneously got an infection, several courses of antibiotics followed but things would only temporarily improve before another infection. Then my mouth swelled up and I was told it was a blocked salivary gland, more antibiotics followed and I was then referred to Max Fax. I had x rays, and an MRI, I knew they were suspecting the cancer had spread and I was told my case was unusual because I’d only had 5 or 6 doses of Denusomab beforehand (my dentist had missed some decay under a crown at my check up prior to starting treatment) and it had initially healed so well, but my MRI was clear and it was just infection! While taking the antibiotics for the suspected blocked salivary gland I took pre and probiotics and started making my own Kefir and Sauerkraut and never got any further infection which was a relief because at that point I’d had about 6 or 7 courses in as many months! I believe replenishing my gut while having the stronger courses of antibiotics was definitely worthwhile.
I was a nurse so have seen the body do some amazing things but what followed surprised me...where the initial infection had been caused a splinter of bone to separate away from my jaw bone, and it was that which appeared to be my jaw breaking down while underneath it my gum healed, sealing off any exposed bone. That was almost a year ago and I’ve had no further problems..touch wood🤞🏻!!
So, while not exactly like your situation, there are some similarities. I hope all goes well for you and the results are positive. Please let us know how you are getting on, Kate xx
A little over a month ago I developed a pain in my face, I wasn’t sure exactly where the pain was coming from but when it started to swell I visited my dentist. He checked my teeth and found a loose back molar but because I’ve been on biophosphates for 5 years I wouldn’t allow him to extract it. There was no abscess, just a wonky tooth.
i put up with it for a couple of Days and then the swelling under my jaw came to a head and started to leak. My GP checked it carefully, examined inside my mouth and very gently pressed my teeth. Still no tooth pain. At that point he said it may be an infected salivary gland and gave me co-amoxiclav. After the course was complete it was very much better but still a small amount if discharge. I left it a few days to see if it would resolve but it hadn’t, so I contacted GP again who prescribed another 5 days of the antibiotic. Once again it seemed almost resolved so I left it a week and then suddenly (almost overnight) my neck swelled and I could barely swallow and now my face was very painful.
my GP spoke with the Max Fax team at the hospital and they suggested I come in for some tests.
i was admitted into a ward, given a CT scan, a dental scan and an ultrasound scan. Later they took a biopsy from the site of the leakage from the jaw bone. I stayed on the ward 4 days and the diagnosis is that it’s either cancer mets that have spread to my jaw or it’s infected Osteonecrosis.
im now on amoxicillin and co-amoxiclav and mouthwash. The jaw pain became worse after the biopsy and Under my jaw is still very swollen. I go back next Friday to be reviewed.
The Max Fax team seem convinced that it’s ONJ but I can’t help thinking that if it’s a growth/change in mets, it may not only be to my jaw.
has anyone else had this situation where there is no visible infection in the mouth but it was still infected ONJ?
Im pretty worried so any info you can share would be appreciated.