My husband was treated for cancer on the base of his tongue 8 years ago. First, surgery, then 7 weeks of chemo and radiation. No sign of cancer now. The last two years he's had problems with tooth issues and last year had to have 2 abcessed teeth extracted. Before and after the extractions, he had hyberbaric treatments. In the last two months, the bone in his jaw has been deteriorating despite continued antibiotics and now we've been told that he needs jaw replacement surgery. We are terrified. Has anyone had this surgery and what has been the outcome.

It is interesting that my husband is on almost the same time-line. Wisdom tooth, extracted 7 years post-tx. for BOT cancer. Now being watched due to early stage osteoradionecrosis (ORN). I am also terrified and frustrated with the lack of medical guidlines for this problem. Was your husband on long term antibiotic treatment or only during flare-ups?

The advice we have received is that a sequestrectomy/debridement would probably be attempted prior to jaw reconstruction. Has that been discussed in your case? I see you are in Chicago so you are probably at a major center. Otherwise, I am also always looking for help with this. I am so sorry to hear that others are going through this.

Lottie

Debridement hasn't been discussed. It's something I certainly would bring up with our surgeon. My husband had 20 hyperbaric treatments before the teeth were extracted and 10 after. Then he was put on doxycycline for about 3 months, then off for a month. Then the oral surgeon hit us with the news that things weren't healing and he needed jaw replacement surgery. John developed a cyst on his lower jaw about 2 months ago that they say is proof of more jaw deterioration. A special x-ray was taken that showed the full deterioration. Now he is on clindomycin for 3 weeks.
The oral surgeon feels that the surgery needs to be done very soon. However, our head and neck surgeon told us this isn't something that needs to be done immediately:that this is a huge decision, that we should take time for John to put on some weight because he'll have to have a feeding tube and a tracheostomy. The surgery and recovery sounds just brutal, and, at 70 years old, it's not going to be easy for my husband who I feel has already been through hell.

I'm just feeling totally overwhelmed. I've been doing some research and wonder if more hyperbaric treatments wouldn't help to rejuvenate the bone.

We're at Northwestern and trust our head and neck surgeon implicitly. I feel the oral surgeon is trying to rush us into this thing.

I'm anxious to find out if there are any experimental bone treatments that could help rather than jaw reconstruction.

Thanks so much for replying. Keep me posted on what's happening with you.

Please take a look at my 2011 and more recent posts related to my ORN. I fiddled while my jaw burned from 2011 until my partial mandibulectomy in October 2014. I finally switched to an oral surgeon who advised that no amount of ABTs would halt the ORN. He performed my mandibulectomy and I elected not to have reconstructive surgery. I have used a feeding tube only for all nutrition and hydration since 2011, and I'm past cosmetic concerns, so the reconstruction decision was easy for me. My surgery was easy with just one night in the hospital and no recovery issues. Healing was pretty complete in a couple of weeks.

You may want to inquire about mandibulectomy without reconstruction and whether your husband is a candidate for this simpler approach. I underwent 120 dives between 2010 and 2014 and the ORN was not arrested.

Thanks, Zenda. Why did you elect not to have reconstruction? Is the reconstruction the worst part of the surgery? I get that feeling from your comment.

My understanding is that reconstruction is most arduous for the patient. Reconstruction success can also be elusive. Check the post archives here at OCF for information from those who have had mandible reconstructive surgery.

My ORN was grade 111 and I had non-healing fistulas and finally a pathologic fracture, either of which made me a candidate for mandibulectomy. Initially, conservative treatment of my ORN including debridement and HBO was appropriate, but 3+ years of non-healing fistulas seems a bit much. I was 67 at the time of my surgery.

In addition to my permanent need for a feeding tube and my lack of concern about a mandible drift without the reconstruction, I am not a fan of heavy-duty surgery, so the choice of no reconstruction was right for me. Yes, my remaining mandible does skew to the right, but my smile has always been a little wonky anyway, and I can still smile.

Make sure all questions are answered by the oral surgeon to your satisfaction. Your husband may want to get an opinion from a second oral surgeon. The proposed surgery may be more or less extensive than mine, which was the removal of a portion of the right mandible and the four teeth on that section. As you know, unless ORN is stopped by surgery or other means, it will continue to advance, causing more damage.

Thank you, Zenda. I now remember that you previously posted about your decision. It is a good reminder to check the archives.

Has the ORN been completely halted since partial mandibulectomy? It's over one-year ago, correct? What about pain/infections? I'm assuming that has stopped.

Coincidently, we spoke to NYC oral surgeon this week. I will post on separate thread when I know more, but wanted to mention that advice was signs of recurring infection should not be ignored (antibiotic therapy & possible debridement after several episodes). Also, mentioned that speed of deteriorate is difficult to predict.

Lottie

Hi Lottie! My partial mandibulectomy was in October 2014, and I have had no pain or infection related to ORN since then. My last panoramic X-ray was last summer, and there was no sign of ORN. I am now dealing with an abcessed molar on my left mandible and doing 20 HBO dives before extraction of the molar. My oral surgeon is concerned about osteomyelitis, as am I. Conservative approach is the Marx protocol of 20 dives before and 10 dives after extraction. My 2005 radiation was external beam and I had plenty of scatter.

All the best to you and your husband in the new year.

Most of my mandible jaw, lower gums and teeth were removed in 2008 due to ORN,12 months after my original cancer surgery and 8 months after radiotherapy/chemotherapy finished. ORN started in and around a jaw split surgeons cut to remove a tumour from my tongue and floor of mouth. During surgery this jaw split was refastened with small titanium plates and screws before sending me into 6 weeks radiotherapy/chemotherapy.

Antibiotics, HBO and attempts at scraping away dead bone didn�t work for me and the pain was excruciating from infected bone � my mandible was falling apart and needed to be removed and reconstructed. ORN spread both sides of the jaw split killing bone, gums, surrounding soft tissue and 13 teeth. My mandible was rebuilt with hip (crest) bone and new flaps made from my hip area also. Since the mandible removal/reconstruction I�ve had teeth implant posts inserted surgically into my artificial mandible and many cosmetic surgeries trying to improve quality of life issues. I no longer have a chin and my lower face and mouth cavity is permanently messed up and my speech isn't clear, but thankfully I can still swallow thick liquids like soup or smoothies.

Best wishes to you and your husband.

Karen

Karen, Zenda & marmc,

We have so many members who have gone through greatly difficult challenges. The initial worry of surviving the cancer becomes replaced with trying to manage these horrendous treatment side effects.

I am amazed and humbled at how others manage to continue with dignity, enjoy life, and support our forum members. Thank you. I hope we all gain strength from each other.

Lottie