My husband had
1. radiation 5 weeks, (Stage 1, 1 cm )right tongue base four years ago (no surgery, no chemo)
2. this year, with the recurrence, (Stage 3, 6cm), mandibulotomy, left neck dissection and removal of 34 lymph nodes (1 cancerous), partial pharyngectomy, partial glossectomy, left tongue resection 50-60% removed, crossing the mid-line near the base of the tongue, and replaced with a thigh flap. Everything healed well within a month. He has some left arm limitations, and has lost 25 pounds.
He has no flexibility in his tongue, and he has copious secretions requiring suction every waking minute. His nourishment comes from a J-tube.
His fluoroscopic swallow test shows no rise in the tongue to press food against the pharynx, and with postural change, bolus drops down and is difficult to move off the epiglottis with repeated and strong hyoid swallow action. He was told in November to "try clear fluids" by mouth, although he would also be permitted to take soft cold food, like ice cream, to retrain the swallowing mechanism. Many warnings about aspiration, of course, and a series of exercises.
Since surgery in July he has seen speech language pathologists for a total of less than one hour. (we are in a rural area, but could travel for more therapy)
He is frustrated with his lack of progress, especially in view of "success stories" which one tends to hear.
What professional services did you have, with what frequency, to recover diction and swallowing after similar procedures?
We look forward to "meeting" you all and sharing experiences with people who really understand his challenges.
Helpmeet in Canada