I have been waitung for a long time now. Waiting 7 years to get the proper diagnostic, as obvious symptoms were then attributed to a car accident feb. 90, which was perhaps the start of the AN. Waiting several years to make the right decision and more years after deciding to do nothing, 8 years. In total I have lived with my AN for over 15 years, and of all the symptoms that were so serious, I am left now with unpredictable balance (or more exactly, my balance acting badly is always my fault and I know why), but sufficiently good NOT to use my cane when walking alone on reasonably flat ground, tinnitus quite acceptable 9O % of the time, very rare but mean stabbing pains in the AN area and cranium (always scary as I immediatly think the tumor is growing), and the hearing is the same which is not much left but still usable. No more dry eyes, no more facial weakness and drooping lip, no more nausea, no more white flashing light with sudden noise, no more concrete filling in the AN ear. I can live with what's left and this AN as long as the symptoms are not as bad as any outcome would be.
But I did a lot of things to be so comfortable with it. I erased the drooling weakness of my lip with exercises, I got back the wonderful moisture and tears that made gel, drops, plastic wrap and gogles unecessary now gathering dust in a drawer. I did it by applying a method called "biofeedback" to caslling the tears back. It took only a few days and some patients who wrote me about it did it too successfully. I walk in the dark as much as possible, very carefully, but it is good exercise for the balance. I watch what I eat and drink as it does refflect on the AN behaviour.
MRIs once per year show no changes for the past 7 years.
I am pretty satisfied finally. It works for me. I wanted radiation for many years but I am now glad I did not do it as 2 more schwannomas have been found since. they must have been there all along but not discovered as the AN had been the focus. Am I NF2? I don't know for sure. We'll see. My choice would be House and I will sell my house to go there if I must.
We can do something with the symptoms to regulate what is good or not for oneself. Moderation is the word, Medications for anything must be cut in half unless it is antibiotics. Immunity must be improved, taking notes of any reacting in important. But one can still go to restaurants, have a drink, climb a ladder and stay up late at night. dancing in your living room is one of the best exercises and placing all usual things in the kitchen on the top selves is another. Try that!
Good luck all,
and remember : bad days are usually my fault!
antoinette
(please, excuse spelling mistakes, thre is no spell check on this site, and english is not my tongue)
