After a year and a half there is continued gradual improvement regarding my vocal cord, swallowing and numbness in my face.
My voice has returned to normal according to other people. It does not sound normal to me but I attribute that to my SSD. It initially took 8 months for my voice to start improving, but once it did start, the improvement was noticeable each month since.
Most of the time I can swallow normally if I am careful in how much I try to eat. Swallowing carefully is something I have adapted to, I do it without thinking now.
One area of my face, the right corner of my nose down to the right upper lip, is normal now. My lower lip and chin are not as numb as before, but are not yet normal. The front area of my tongue is returning to normal, while the middle section still feels burned. I've been advised that since I have improved through the 18 months so far, it may be possible to continue improving.
I had a large tumor subtotally removed. It took 7 months to get over the bobble headed feeling I had. I was jogging at three months, but did not feel normal doing it until 4 months later. From that point the remaining areas of problems began a slow process of recovery. I felt better every month.
If recovery seems slow, remember that in some cases it can be a long process.
Because I have residual tumor, 3% to 5% to save the facial nerve, I may need more treatment in the future ( gamma knife is my surgeon's choice.) I found three studies from medical schools that followed subtotal removals and found the mean time to regrowth was 4+ years in all three of them. Not all subtotal removals resuted in regrowth.
A recent study of subtotal removals by the Univ of Florida med school followed only people age 65 and over (I was 65) at the time of the surgery. The Florida study found 2/3's of the people had no regrowth in periods of follow up for 7 to 9 years, if I remember correctly. The implication is that older people have fewer instances of regrowth of residual AN tumors.
There are current clinical trials underway under the guidance of Dr Peter Chang at Stanford with cooperating neurosurgery centers around the country to treat large AN's ( >3.0 cm.) The protocol is subtotal removal to preserve neurological function and use radiation as adjunctive therapy in cases of regrowth. I read a paper from Harvard med school that indicated this protocol may become the treatment of choice for large AN's.
I was very fortunate to have a surgeon with extensive experience in skull base tumors and his own minimally invasive method of accessing the C-P angle. I was unfortunate in that I had significant involvement of the tumor with the lower cranial nerves which led to the complications in my throat and larynx. But all in all I have recovered well and have no complaints about any of it today.
