I am looking for 1) advice from anyone who has had reconstruction surgery of the lower jaw with a titanium plate and dental implants/denture placed in fibula or hip bone ; 2) recommendations for an oral surgeon in the Los Angeles area, with tons of experience for a series of implant reconstructive surgeries; and 3) anyone who may be living without a tongue and/or without a lower jaw and no implants/denture, and hear how you are managing it all.

I have been to a number of oral surgeons who have all said implants are impossible. I no longer have a tongue, floor of mouth, or lower jaw. The surgeon used a titanium plate and fibula bone to form the jaw and tissue to make a tongue flap/floor of mouth. I am disfigured because of how the plate was put in. And my lower lip goes in so far that I look like an old granny, unless I keep a smile planted on my face and move my jaw over so it looks kind of aligned with the rest of my face. I also drool 24/7and walk around with a paper towel folded up clenched between my lips so a river isn�t continually pouring out. Any advice how to stop drool pouring out? I can talk but only a few people can understand some of what I say (thank G-d for a Boogie Board to write on).

The surgeon also sewed the tongue flap up to the top of the back palette, effectively closing off my throat area from my mouth entirely. A living nightmare to say the least. So the trach stayed in. I had two surgeries in mid 2015 (by another surgeon) to reopen that back area, so I finally have an opening again in my mouth. The trach remains in as a couple of oral surgeons I saw said to keep it in place in case I do find someone to perform the surgeries necessary to get implants and a denture, that I will need the trach due to swelling from the surgeries.

Finally an implant specialist at UCLA said it was possible to get implants, but that it is very complicated and difficult. They came up with a game plan which included 4 surgeries (at least), the first being opening up my chin, pulling out the plate, debulking the flap, putting plate back in, and then never got back to me after I sent them an email asking if they have ever done this surgery before and what was the outcome for the patient(s). Went to get a 2nd opinion. This oral surgeon was insistent that what UCLA outlined was not going to work. That no implant will take to this fibula bone because it�s too thin. He proposed taking out the titanium plate entirely and adding in hip bone, and then trying the implants 9 months later. There is also lots of debulking that has to take place, as well as untethering the flap that was sewn in way too tightly to the inside lower lip � which has presented a huge problem according to everyone I�ve seen. Advice, help, anyone? Thank you.

Welcome to OCF, Phyllis. You have been through a lot! i have been super fortunate to have escaped nearly all side effects so far. There are members here who have experienced a lot of what you describe. I'm sure they will provide better answers for you.

Don

Hi there,

Thanks to Karen Rose for reminding me about OCF. I'm a 4x tongue cancer survivor, starting with 1st surgery in 1992. Last surgery in May 2014 to remove the BOT flap from the 3rd surgery in 2008, remainder of front tongue, floor of mouth, and lower jaw entirely. Rebuilt jaw with titanium plate and fibula bone. Thick flap for floor of mouth. I've been told by several specialists getting implants will be impossible. Has anyone gotten implants in fibula bone?

I had one UCLA oral surgeon outline a plan using the fibula bone. Then another oral surgeon said it would be impossible to use the fibula bone because it is too thin and would need to take hip bone and add it in.

If anyone has had experience with jaw removal and getting implants, would love to hear from you. And would also love to hear from anyone who has had tongue removal and/or jaw removal and has not had implants to see how you are navigating life. Because of no lower jaw, gum or teeth my lower lip goes in very far - so can't even drink and I drool 24/7. I walk around with a folded up paper towel clasped btn my lips to stop the drool. I rarely go out because of it - I'm treated terribly in public, people move away from me fast, stare, etc. I can hardly bear it any longer. I had a great support system for my first 3 surgeries, but have had very little since this bout. Too many friends have moved out of LA, have passed away from their own cancer, or just can't handle it and ceased all contact. It's been difficult this time with only sporadic support here and there.

I have sent you a PM about this as I might have a few answers to your questions that are way too long to post here until I understand your situation better. Please check your mail

I would look up Jeffrey Hammoudeh, MD, DDS
Director, Jaw Deformities Center, Children�s Hospital.
He was one of my surgeons and is really respected and knowledgeable in the reconstruction of the jaw.
Also, there is a dental oncologist which i still go to who has a lot of knowledge on treatment an surgeries. Dr. Daniel Copps, DDS in Tarzana.

I wish you the best.

I also had a mandibulectomy with fibula rebuild at Mayo Ariz. My surgery and recovery went well and I am now trying to make my way through trying to get implants for a denture. I am told by many drs that is is very risky since Id had radiation a year ago. otherwise the fibula is supposed to be able to accept implants just fine. but blood flow to the new mandible is difficult after radiation so it is very risky. They are proceeding slowly, one at a time and watch and see. they are afraid of osteoradionecrosis.

I merged your posts onto the same thread so its all in one area for you.

Please take a look towards the top center of this page. In the middle next to the My Stuff tab you should see a tiny flashing envelope. Click on that to get your messages. Brian sent you a message with info that can help you.

Best wishes with everything!

HI Rosalie, may I ask if getting implants has proceeded. I am having a very tough time finding someone to handle my implants because of how the fibula bone and flap were done. There is one dental surgeon at UCLA who is in charge of the implant department and has gotten a DaVinci machine and wants to try it with that. It's going to be a series of surgeries. The first of which is to just debulk the flap. Then 4-6 months later, more debulking and attempting to get the attempts in. It is certainly a process, and zero guarantees for my case I've been told.
Best,
Phyllis