My wife and I are worried about my AN. Found 10/1/2013, after 3 years of progressive hearing loss. Balance issues noticed by early summer 2013. I also had facial numbness, loss of taste, and years of frequent headaches. My AN measured 4.1cm x 3.6cm x 3.8cm, and severely compressed my brainstem. I had near total blockage of the 4th ventricle. On 10/30/2013, surgeons removed 95% of it via retrosigmoid approach. They told my wife that it was calcified in parts, and the surgery had been like scraping a racquetball (in size and texture) off a piece of tissue paper. Unfortunately, they had to leave cells behind on the facial nerve and brain stem. I recovered quickly, and was back at work within with only a very minimal facial droop and right side deafness.
The docs told us in our followup appointment that they never like to leave cells on the brain stem, but it is better than a brain stem stroke. Although you can irradiate what's left, one doctor indicated you don't want to irradiate the brain stem. They hoped to see the remaining tumor curl in on itself and the other doctor recommended we do GKR to treat that. He mentioned that if it expanded, we would have to look at a riskier form of radiation.
Last Monday, I had a 10-week followup MRI and the radiologist measured residual neoplasm at 1.7cm x .8 cm x 1.6 cm. The MRI shows a pinky-print sized tumor back - which is much larger than the sliver of cells my wife saw along the brainstem in the postoperative MRI. My balance, which was back to normal by 4-6 weeks, is not as good now, and I had a headache like I did before surgery just a few days ago.
We are still waiting to hear from my doctors, but nothing on the internet mentions AN cells left on the brain stem - just facial nerve. Regrowth this quickly seems a bit alarming. Anyone have some wisdom to share?
