Hi
I am due to have surgery for osteonecrosis of the jaw in July and was wondering if anyone else has had surgery and could advise me on what is involved. I know that they will have to take a bone from my leg but just wanted to know if anyone else has gone through this.
Many thanks. Love to you all
Anita
Hi Anita
I’m not aware anyone else has mentioned on this forum about surgery for ONJ so you may not get any/many replies. I know a few ladies needed intense courses of antibiotics when they had problems but I’m unsure if any had to have surgery. I wish you luck and hope it solves the issue. Hopefully someone will be able to add their experience but I didn’t want you thinking no-one had seen your post.
Nicky x
Sorry Anita I can’t answer your question but I am very interested in why you need this surgery and in Nicky’s response to you.
i am being encouraged to consider starting bisphosphonate infusions given every 6 months to protect my bones from Arimidex. I was concerned about osteonecrosis but was told it is very very rare and as long as I start off as dentally healthy I am unlikely to encounter problems.
Are there many people on here who have regretted the decision to have the infusions? I do know that the risks differ for people who take the bisphos tablets by mouth
Be glad to hear views from my forum friends
thanks
JJ
Hi Anita,
I have had issues with my jaw following dental work and for a while it did look like I was going to have severe problems but thankfully it eventually healed. When it happened it started with just a tiny bit of bone popping through, almost like when a baby cuts a tooth, but it quite quickly developed into a gap in my jaw with exposed bone, this got infected despite doing regular salt mouthwashes, oil pulling and eating really well. After 5 or 6 repeat infections in as many months requiring antibiotics I was really concerned about my gut biome and took a course of probiotics and started making kefir, it may have been a complete coincidence, and I certainly think I needed those antibiotics, but after that I didn’t get another infection and things very slowly started to improve. A piece of bone had separated in my jaw and it eventually healed underneath that splintered piece, so I imagine that area must be weakened…amazing what the body can do though!
I had to stop my Denusomab for around 10 months and during that time my bones definitely weakened but thankfully I’m back on it now, but 3 monthly whereas previously it had been monthly. I’m still seen by the Maxillo Facial department, who have been excellent. I did ask what would happen if it didn’t heal, and surgery was mentioned, as I can see this being something that may occur again so I wanted to know what they could do.
It was my Oncologist who said to stop Denusomab, Max Fax weren’t as concerned about me continuing with it and just said they would deal with any consequences, so I think they must see more patients with onj than we maybe realise.
I hope your surgery goes well, please let us know how you get on.
Kate x