"OCF Down Under" Platinum Member (300+ posts) Joined: Mar 2008 Posts: 404 Likes: 2 | Hi Brian,
I would like to reiterate Christine�s comments. I had nearly all my tongue and floor of my mouth removed due to cancer from what originally appeared as a tiny ulcer. That was, and still is incredibly difficult. However, the aftermath of having nearly all my mandible jaw removed due to Osteonecrosis (ORN) has caused irreversible damage and major quality of life issues for me that are much worse than having my tongue removed. It is difficult to explain the damage osteonecrosis (ORN) can cause. Surgery for ORN is brutal.
The damage from having my jaw rebuilt and reconstructed with bone from my hip is with me every moment of the day. Titanium plates & screws holding my lower jaw together, my lower facial bone structure disfigured, muscle damage, nerve damage, drooling, chin/neck flap, removal of lower gums and teeth. The list goes on. If required, HBO treatments are nothing compared to the consequences.
Anything recommended by your medical team to help improve or prevent bone damage, and therefore lessen the chance of surgery should be followed.
Karen
46 yrs: Apr 07-SCC 80% entire tongue removed,T4N1M0 Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs 30 x rad,6 x Cisplatin, 30 x HBO Apr'08- flap Recon + ORN Mandibulectomy (hip bone to reconstruct jaw) Oct'08 1 Plate out-jaw Mar'09 Debulk flap Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
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