Hi fellow post toastie, I had GK surgery Aug. 2013, swelling by month 4 worst symptoms month 4 through month 12 post GK. My six month MRI showed swelling with necrosis which supported the theory the swelling was causing an increase in my symptoms. Necrosis is a darkening of the center of the tumor which is an indicator of .....death to the tumor. The strangest part is they may have gotten worse progressively but felt like they just (pow) hit all of a sudden. So the fact that the balance, hearing, tinnitus, headaches, vertigo, fatigue, loss of mental sharpness started was a good sign.... The beginning of the little buggers demise. Everything didn't happen at once but accumulated and made life unbearable. Hear is an odd one, I started bighting my tongue and the inside of my cheeks, like I lost control of chewing and swallowing and tongue movement. I noticed trouble with speaking sometimes like my tongue wouldn't work.
At my six month check up my doctor prescribed vestibular rehab. went to a sports medicine rehab. clinic, spent six weeks there and learned some exercises that definitely helped calm things down. The explanation I received was that the loss of that nerve function means the body needs to learn to compensate and requires practice to relearn. Month ten first of july 2014 I was hit with vertigo severe enough to put me in bed for three days. When the vomiting ended I could hardly walk. It took me a month to get over it, I started by just walking. I started walking down the driveway, I would walk as far as I could and back again. I had to watch my feet, making a conscious acknowledgement that each foot was on the ground when I shifted my weight. In other words mentally explaining to my brain how to take a step with out falling. I moved on to walking down the street making the distance between telephone poles as my measurement of distance and adding a poll as I could stand it. Eventually I was able to make the circle, four roads that end up back at my front door a four mile trip. My time was not impressive at all and took several hours. By the end of August a one month time frame I was walking the trip enjoying the sights and sounds around me. I no longer watched my feet, walking was as natural as it used to be and my balance issues were nearly gone.
Less than Two weeks till my next check up one year, six month MRI. I expect to get good news, I did not get my hearing back, that I am assuming is gone for good. I have about 10% hearing in the AN ear and 80% in the good ear. I can function fairly normal with out it. All I get in the AN ear is an acknowledgement that sound is happening on that side. Enough to make me pay attention and find out what is happening over there. No word recognition over there, but I lip read turn my head to hear with the other ear etc. I get tired of saying could you repeat that please, but it has become part of my life.
There are several nerves in the bundle that enters the brain stem at the point of AN attachment. It could effect one or several nerves at once. Here is an over simplified description. The AN attaches to a nerve which destroys that nerve or debilitates its function, this is most likely permanent damage. The nerves around it are pushed out of the way or pinched against bone, some what like pinched nerve in the neck or back. That nerve reacts as being cut off but will return after the pressure is removed. The brain reacts to the loss of signal by searching for something to fill the void of signal, ie. hearing is replaced with tinnitus, the brain replaces the sound with its own. I use a hearing aide hopeful that my brain won't forget how to hear and eventually regain some hearing, but the hearing aide itself causes some discomfort, like the nerve has been over stimulated like the after effects of a Kis concert.
Those who have lost hearing most likely have less damage to facial, mouth, balance nerves, but no two AN's are created equal and the location, size, shape of the tumor and nerves effected will determine what symptoms present themselves. And our brain will react to those disturbances in an unique way. For those who elect surgery will have a different reaction because the procedure creates a different set of circumstances ie. severed nerve, open wound, etc. I am not familiar with the after effects of surgery whether that is easier to rehab from or not.
So here's hoping you don't wind up in any DUI checkpoints. I agree at times it feels like a hangover minus the fun of getting there. Oh well, stay positive work on the things you can, be patient with yourself and keep in the back of your mind this will get easier in due time. Hoping for good news at your next checkup.
