Xynobix,

You are doing AMAZINGLY well for someone having 75% of tongue removed. I had (I'm guessing) about 85-90% of mine removed (subtotal glossectomy) in Feb 04 with radiation AFTER surgery. Had forearm flap like you + a PEG tube which I still have and use for the major part of my nourishment. Due to slow healing of the neck area due to rad and several subsequent cellulitis infection in the neck, didn't start therapy until December 04. After a year of swallowing therapy, two endoscopies with dilation to stretch the esophagus, daily massage and stretching of the mouth, I am able to swallow with a 2 ounce syringe. I have a sense of taste so there must be some portion of a workable tongue because I can make it wiggle ever so slightly.

I understand the discomfort about eating out because I have to sit there while everyone else eats. I have to use a syringe at the urging of my therapist because my "tongue" is sewn to the floor of my mouth in the front so it doesn't move. I am assuming you have some degree of motion in yours. So I'm further assuming that your flap is not tethered (sewn) like mine is. 10-15% shouldn't make that much difference. My ENT gives me the impression that my flap will always have to be "tied down" so this limits my ability to speak as one might imagine and I can't control any food in my mouth to swallow it even though my swallowing mechanism is working fairly well now.

I posted to Brian Hill in the General Board (SUBJECT "Getting Through It") about putting a section for people who have had major tongue surgeries regarding flaps, mobility, speech and eating issues. I have search Amazon and the AMA jounals and find precious LITTLE on the subject of how "glossectomites" like us cope with issues. The tongue is such an integral part to everyday living that I feel there should be more attention given by the medical and theraputic communities to the special issues - oral hygiene peculiarities, speech, eating, types of surgery for flaps (drgree of mobility), psychological coping in social activities, etc.

I apologize for rambling and getting "preachy" but I'm really happy to see someone who had so much tongue removed doing so well. Keep up the good work and watch the oral hygiene. I use a tongue cleaner after each oral intake which I try to get in 15 ounces daily.

Jim Haucke