Even though I have not posted much here. I have been visiting this forum quite regularly. Reading the posts were quite an inspiration for me to get over my own despondency during the last two years of my treatment. I had my last surgery post recurrence during June 2011 and the final post surgery cycle of my chemo in September 2011. Thereafter i have been keeping my spirits up focused on getting back my weight and quality of life as much as feasible. I have gained back my weight and now am at 165 lbs!Also my stamina has increased a lot and i have begun a exercise regimen over the last three months which involves a 5 mile run every day. Despite my other handicaps i also managed to go on an overseas vacation to Cambodia and Thailand with my wife last month. Thank you all for being an inspiration to me.
I had my annual PET CT and MRI Scan and am clean! This was a big relief. Meanwhile I had been pestering my surgeons to do something on my quality of life issues which was getting postponed so that one year is over post last treatment. Now that the scans have come clear, the doctors are examining doing another surgery. I have met up with my Plastic Surgeon, Oral Maxillo facial surgeon and my lead cancer surgeon for evaluations. Post my surgery since a large part of the tongue was removed and replaced with flap and the mandibuluctormy, my speech and eating have been severely compromised. Despite speech therapy, the improvement is not substantial which has resulted in my having to take a break from my profession. I have highlighted my quality of life issues to doctors as mentioned below:
1)Currently my mouth opening is severely restricted. This was also there earlier due to fibrosis and the resultant earlier radiation but has further diminished after the surgery. While I have been performing exercises to improve the same, the resultant outcome has not been very encouraging. The widening of the mouth both width and height of opening MIGHT improve my eating function.
2)Lip Sealing: The lower and upper lip alignment is not proper and are not sealing at all. This results in drooling while drinking and spilling while eating. My control over lip movement too is restricted. The lack of lip sealing also meant that air escape during my attempt at speaking resulting in poor speech intelligibility.
3)Mobilizing the Static Tongue: The tongue is static and the movement is restricted severely. While i have been able to mobilize the tongue to move forward/backward through exercises, the tip of the tongue being tethered to the floor of the mouth is a major irritant. If tongue is allowed to move freely, especially if it is freed and able to move vertically towards the upper palate, it MIGHT help is controlling food bolus to some extent apart from giving a significant boost to my speech intelligibility.
4)Teeth implant: Currently most of the upper teeth save the upper molors are intact. However there are only two teeth left on the lower side and even the alignment with the upper tooth is not good. Furthermore the lower teeth have more or less decayed and have lost whatever little functionality it had. The process of mastication is near non existent which in turn effect my eating.

I am now awaiting the doctors to revert back to me after the team goes through all the reports. The surgery will take place around christmas time after the plastic surgeon returns back from USA. Meanwhile i am really keen to know if anyone else has gone through similar situation and what exactly can i hope for post the rehabilitation surgery. Any tip for my next meeting with the doctor team will be appreciated. Thanks you all again and sorry for this long post!

Chandra, so sorry to read about all your struggles! You have had a very long road!

From what I have gone thru, I may be able to help with some of your questions. Reconstruction sounds like it would greatly help you with so many things. It could fix your lips, untether your tongue, and possible remove the lower teeth. It sounds to me like those teeth are more of a problem than a help with speaking and eating.

Plastic surgeons can do amazing things! It may take a few surgeries to get you where you want to be. Go slowly and have the doc do things a little at a time. You must wait a full year before having reconstruction (looks like its been 2 years for you). I have had 4 reconstructive surgeries. My doc keeps telling me they could do more but Im not about to risk the advances I have made with any chance of a complication causing a setback.

Best wishes with everything!!!