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.


Dx 1992 sccS1 l lat tongue. Surgery
Dx 1994 sccS3 l&r lat ton. Surgery & 40 rad tx.
Dx 2007 scc BOT S4. Cisplatin&Erbitux, 35 rad-no effect. Major surgery. Flap attached to front of tongue. Diff voice, PEG. Metas to rt lower lung - easy surgery to remove 4 small tumors.
Dx 2014 - SCC S4 remainder of tongue,flap,floor of mouth. Full glossectomy, lower jaw mandibulectomy (even tho no cancer there - yep, you betcha I'm angry over this). Trach remains. PEG remains.