I had Translabyrinthine surgery for a 2.5 cm..3 cm. acoustic neuroma in May 2009. As a result of the surgery, I lost hearing on the left side, had significant eye issues, taste distortion, balance issues, facial numbness and scored a Grade 3 on the House Brackman scale. Some tumor was left in order to maintain some facial nerve function. It took time to work through those issues, at least a year, and I continue to work on improving those challenges.
The last follow-up MRI in May 2014 showed regrowth of the tumor which was best seen when compared to the 2012 MRI. I had started experiencing the tingling on the left side of my mouth, which was one of the symptoms I had prior to surgery, though much more significant at that time. I was advised to consider further treatment, including Cyber Knife.
We were able to find a great facility and team of health care providers for Cyber Knife within 2 hours of our home. 3 treatments were given on alternate days. The treatments went without incident and it really is quite amazing how the Cyber Knife works. I was put on steroids, but had the dose reduced after experiencing major dizziness.
Many of the after affects after the Cyber Knife treatment were similar to what I had previously experienced after the surgery, only not as bad. The thing I noticed first was the taste distortion - very metallic taste, and a tingling on the left side of my tongue. The first week after treatment I felt like I was hit by a truck inside my head - I didn't, or couldn't think too hard. Concentrating for any period of time was difficult. This has dissipated with time.
The facial nerve has been aggravated, including facial twitching at times, tightness in my cheek, and some eye lid weakness. Doing the facial exercises, that I learned last year, should ease that.
But the issue of greatest significance has been the fatigue. I do a little bit of activity and find I have to rest. I understand this is pretty normal and should improve over time. So for now, I do what I can and take it easy and let my body and brain rest and heal. I retired just before the Cyber Knife treatments which has eased any stress on just taking it easy.
It has been good to refer to the ANA web page and Forum and realize that each individual has a unique response to treatment and that this becomes the "new normal". Having an acoustic neuroma has been quite a journey with facing major surgery and now having gone through the Cyber Knife treatments. I have felt very fortunate in that it is manageable, and that I ca modify my life accordingly. My thanks to other ANA members for sharing their story, it is a great support.
