Hi Everyone!

We live in the midwest and are looking for referrals for surgeons that do jaw replacement for ORN.

I would start first by asking where your husband was treated for his OC. Many ENTs or oral surgeons who specialize in OC perform this type of procedure. Or you can try at a Comprehensive Cancer Center (CCC). At a CCC you are more likely to find more doctors who have more experience in this type of major surgery.

Since our members are from all over the world, many members would not be able to help you with a physicians name for ORN surgery. Not all patients who have rads will end up with ORN. I was treated locally (at a Moffitt affiliated cancer center) for my ORN.

List of CCCs

Dont be surprised if the doctor asks your husband to first do HBO to prepare for the ORN surgery. Unfortunately HBO takes up lots of time as your husband will need 20 dives prior to the surgery and 10 after. Each dive takes approximately 2 - 2 1/2 hours. If the physician that you and your husband decide to use does not tell him to do HBO, ask them why not. ORN only gets worse if untreated and it can become very painful too. HBO helps the patient to avoid ORN down the road so it is an important step that should not be ignored.

Good luck!!!

I know you posted several months ago with your husband having hbot, debridment, so not sure where you stand now or what concerns you may have. There are different grades of ORN 1-3, with stage 1 and 2 treated conservatively with hbot, debridment, antibiotics, pentfoxyline (spell) & vitamin E, in a stepwise manner, depending on grade. There are some trials with stem cells too for ORN, which look promising.

Christine offered sound advise. I'm on the east coast, so I'm not familiar with anyone in the Midwest.

Good luck

Thank you both!

I believe he is probably stage 3, as his jaw is now broken. He is on Penicillan, Cephalexin, and Clindamycin. He also has antibiotic soaked strips that he packs in the opening where the teeth were pulled. We are heading to Cleveland Clinic to meet with surgeon soon.

What are the risks of this procedure, aside from the anesthesia?

I would like to know more about the clinical trials, do you have a source where I could research them?

Yes, fracture I believe brings it to stage 3. I had more than half thickness of ORN in the mandible, Ramus/Body, as seen on scans, bringing it to late stage ORN, and after 2 years of conservative treatment much like your husbands, and by surgery time, 3 months after being told I needed surgery for late stage ORN, my jaw was fractured, so would have required a mandiblectomy anyway. I also had reconstruction at the same time with a fibula free flap, which may not require HBOT, and due to being vein depleted in my left neck, same side as ORN, the mamary artery and vein were taken from my chest to connect blood flow to the flaps, which included calf muscle/skin due to severe fibrosis in the left neck, which would have been unable tk close during surgery after all my radiation, over 200Gy, and 5 neck dissections.

There are a number of risks for the surgery, which were about 2% with my surgeon for this type surgery, and for me he said it was 5% risk. I think the biggest risen would be flap failure during the first 24 hours or so, and lessened each day, as well as other risks. Several times a day the doctors and nurses in Step Down checked the flaps with a Doppler to hear the blood flow.

Currently I'm in a rehab nursing home for the past 3 weeks since a week after my 8 hour surgery on 9/9, so it takes time to recover, in addition the persons health status and performance factoring in, and type of help you have at home, which was close to 0 for me, so I was sent here for rehab.

As far as the clinical trial with Stem Cells, it's with Dr Marx at the University Miami. As with prior radiation, it may be more problematic, as more research:studies are needed. I read a few articles on this.

http://www.texomashomepage.com/health/mending-mouths-rebuilding-jaw-bones-with-stem-cells

Hope this helps

I hope you're recovering well, and thanks so much for supporting others with your knowledge! You have no idea what it means to me to be able to ask questions of real people that have been through this.

The conversation has begun about doing the fibula flap, both with the oral surgeon and ENT (who is referring us to a CCC for the surgery). I'm hoping we don't have to wait too long to do this. My husband is fairly healthy/active and will have help during recovery.

Did you have a PEG put in, or are you able to get nourishment through your mouth?

They put a nasal tube in for a few days, and ate a puréed diet after that, which I'm still on due to having no teeth anyway, and was on a mechanical soft diet before that anyway, aspirating as shown on the modified barium swallow I had on Friday, which isn't really new. They also put a trache in for about 4 days with a button devise after the first day, so I could speak more effectively, but once removed the stoma hasn't fully closed, so it's still open, and the biggest challenge keep having it changed, which food shouldn't really be going out, so that's another issue I'll have to find out about.

After surgery, I had no pain or issues with my jaw. It's mostly the inflammation on the neck flap, which has subsided, but may need debulking,!the thigh graft which has to scab over, and changing the fibula graft bandages, and trach stoma bandages daily. The stoma basically after each meal, so it must drive the nurses here crazy.

Another challenge was in recovery, and when getting to the step down room a day later was communicating. Knowing such from posts here, I had on my iPhone ispeak, but that didn't work out well with my vision at the time, so I was able to request an erasure board, which came in handy as I had no once there with me.

After a few days, I was anle to sit in a chair with assistance, and by the time I went to rehab I was allowed partial weight bearing on surgery leg, so use a walker or wheel chair.

I really didn't have to wait long. It was mostly me deciding to have surgery or not, and once I did, I delayed it by another month and used that time to
do as much as I could for myself, as there were all my doctors I wanted to check with, and then all the pre- op testing, MRI to check vein in legs, 3D CT scan of jaw, so I was quite busy, besides researching line yourself. I was lucky to have an ENT I had for three surgeries, plus experienced with ORN, this surgery, and use of mamary vein/artery as was the plastic surgeon with breast cancer reconstruction.

Hope this helps, and ask anything you would like if I can help.

My husband's neck is in pretty good shape so I hope the vascular system is intact. He did not have any surgery when diagnosed. His neck feels a little tight now and then, however he doesn't really complain of pain in it. His jaw is sore and almost always swollen.
Will he regain highly improved use of his jaw? Right now he can't open his mouth very wide. I prepare foods that are soft or chopped up well.

There will hopefully be no more ORN jaw pain like myself, and reduced swelling, but I don't think there will be much change in trismus to full extent as before treatment, just with what limitations ORN has caused, I had trismus before the ORN, and mouth opening is still about the same 12mm. I'm just glad it didn't get worse, and still able to eat. They watch me like a hawk here, but was able to sneak in a cup of coffee and a French crueller when i went for my test lol. All the swelling isn't down, more like the fibrosis, as it was there before. I read where doctors should be up front with their patients with this surgery not correcting everything. Several reason I had surgery was that my ENT recommended r it, so did another top oral surgeon for ORN, my health is at its best in 6 years, and all my other doctors; oncologist, radiation oncologists, nephrologist, primary gave their approval too.

I was around170 before surgery, gained 14 pounds of fluid from surgery to 184, as they weigh me here, and now down to 156lbs.

I am very worried about weight loss! He never gained back his weight since treatments almost two years ago. I've been trying to pump as many calories as I can into him. I have a feeling they will want to put the tube back in to maintain him because he is very thin. I figured his jaw movement would never be the same, but even a little more mobility would be wonderful. I wish so much that he could chew food again. I'm glad you can enjoy simple pleasures like coffee and pastries

I agree that they should be upfront with the patients. What I really want is honesty from the doctors, which I don't feel we've had. His oral surgeon said "it doesn't look very good" after he did the debridement. I went back to meet him afterward and nothing at all was said to me, the doctor had already left the room. After a couple of weeks of not hearing anything new from his checkups I made a call to the cancer center. "It doesn't look very good" means you had better explain why. Well, that got things moving.