Hello, All,
I am writing a bit here about my post-treatment experiences because I have learned from some of the best about AN journeys. In no way do I write to concern or alarm newly diagnosed folks but rather to inform and explain, knowing that I benefited from the experiences of others. When "things happened," it was exceptionally helpful to have read about other reactions so I better understood what was happening. However, I've also learned that EACH AN individual is very different, there are no particular/expected outcomes, and that some people have no reactions whatsoever.
I am almost six months post-GK. I had my treatment done at UPMC. For months 1-5, I experienced mostly fatigue and continued tinnitus.
But around the middle of month five, I experienced more and more acute symptoms.
I have had pulsatile tinnitus for well over a year. It started in my AN ear but after treatment, the pulsatile tinnitus (heartbeat in my ear) went to my non-AN ear. The neurosurgeon I spoke with this week said that's because my brain is very confused---trying to send out signals---and the brain doesn't know what to do. There is no way to turn it "off." I have been prescribed an MRA--a Magnetic Resonance Angiography--which studies the blood vessels and can determine if there are any vascular concerns. It's one used with the TRICKS sequence to rule out any additional possibilities beyond the AN.
Since my treatment, I have also had more blurry visioning and a changing of eyesight. I do not have dry eyes or double vision but rather more distorted visions. Reading is harder and working on a computer is trickier. I am seeing a neuro-opthalmologist in a few weeks. I suspected that my eyes were just changing because of age--and that could be. But it was the neurosurgeon, post-treatment, who asked about my eyesight and if anything had changed. When he initiated the conversation, I told him about my weaker eyesight, and he referred me to the Ophthalmologist.
My tinnitus is off the charts. While I have had pulsatile tinnitus for a year, I've also had tinnitus---the ringing/sounds in the ear. I was at a "4" for a good while, but the past month I have been at an 8. The other night, I actually woke up because of the ringing in my ears, the first time that had happened. I suspect the GK has done its thing, my AN has swollen, and this is temporary. Over the past year, every doctor I have spoken with says that tinnitus is quite common but there's little they can do about it (except masking/white noise).
I continue to experience some fatigue. My doc explained that this is because the brain tissue works like a snake's skin. As our cells die and reproduce, by this point I have regenerated new cells that are now being exposed to the radiation still in my system, and the new, unprotected cells are confronting the treatment which takes time and energy. As I commute to work, I find in situations like being in a train station overwhelming. While I have experienced some balance issues, they have been minor--until I have sensory overload. The doc explained that this made sense to him. He said that he is overwhelmed at Union Station, and he doesn't have a brain tumor. He said because an AN is on the vestibular (balance) nerve, my entire vestibular system is impacted. The sounds around me, the people moving in all directions, my moving forward while trying to stay upright, my need to get from Point A to Point B, it is all sensory overload to the vestibular system. He said this is why spaces like restaurants can be overwhelming for people with ANs....because they're trying to listen to the conversation at their table while also being inundated with sounds, sights, and smells from all directions. This made a lot of sense to me, and it was helpful to hear. (His advice was to do what I could to minimize effects like wear noise-reducing headphones, stand on the periphery, and focus on a single target to avoid too many distractions.)
While the research isn't clear, I believe fully that my cognitive abilities are not what they were. I have a more difficult time with retrieval and "go blank" far more often than a few months ago. We all joke about "senior moments," but this doctor said he had done a full study on this and that over 50% of his patients indicated they had memory retrieval (usually short-term) effects. They cannot explain this, but he said anecdotally, he hears this over and over so there must be something to it.
Finally, I wanted to write about my trigeminal (facial) nerve experiences. This, by far, has been the most frightening thing for me, and it's why I write now. Because other trendsetters have written about this elsewhere, I wanted to share my experience because it was less frightening because I had read about it previously. Others have called it a "spasm," but I would not. I call it my "Incredible Hulk" moment because it feels like an inner demon is inside of me trying to get out!
The first one happened just as I was getting out of bed, and the whole left side of my face started to tingle (my AN is on the left). Then, my left eye started to twitch rapidly. And finally, the entire left side of my face started to convulse and shrink into this perverse snapshot, and I lost all sensation on the left side of my face. As it was happening, I didn't know what to do. Resist it? Let it happen naturally? Try and un-contort half my face which was now paralyzed and completely drooping on the left? Thankfully, in my head, I knew this was related to my treatment, and I didn't (completely) panic.
After about 20...30...40 seconds, and my face was still paralyzed, I found myself asking, "Is this it? Will my face stay like this?" I thought of work (I couldn't go out in public), I thought of my spouse (who would be terrified), and I thought of this message board, thankful at your posts, your descriptions, your willingness to share your experience and so I didn't outright panic because I suspected this was temporary.
Then, as quickly as it happened, my face started to relax and re-position itself into "normal."
That was about 10 days ago, and I have had two repeat performances. Each time, it was first thing in the morning--as if I was "at rest" during the night and while my "face comes alive" when I get up, it causes the reaction. But they are all brief, and none are as frightening as the first time it happened. Upon speaking with two separate doctors, they indicated the tumor is likely swollen, rubbing against the trigeminal nerve, and this will be temporary. Stress, they say, can further induce them because of the swelling. They have prescribed a steroid, but they indicated I would be trading one side effect for another and so I have opted not to take the steroids as of yet.
All of this is to highlight that our ANs are in the mix of vestibular, trigeminal, and acoustic nerves. This is why I share each of my related symptoms because the AN is working with different nerves.
Following GK treatment, the tumor can do one of three things: stay the same, swell, or start to shrink. I have my six-month MRI coming up quickly, and I'll report back. I suspect that my tumor has swollen, causing the above, and that these effects are temporary.
About hearing: My hearing has diminished post-GK. I was at about 95% before and believe I'm at about 60% now...but I also have a hearing test coming up. I was told by my doc this week that I would likely still have "better hearing" if I hadn't had GK, but he also said there was no guarantee to that and the alternative is that the tumor could be bigger and the balance issues and etc. greater. So each of us has to weigh the pros and the cons and ask ourselves what we can live with, if necessary.
I am embracing my super-hero powers, believing I am stronger for it. I continue to repeat my mantra that some things in my life need to matter more while other things need to matter less.
For the people and support here, I am grateful, and I wish each of us the very best.
Peace,
Patrick
