Hi, daydreamer:
The primary care physician-to-ENT-to-Neurologist routine is a common one for AN patients. Some of the confusion is based on the reality that acoustic neuroma tumors are fairly rare and many doctors, including some Neurologists, are basically unfamiliar with them.
I was 'lucky,' in the sense that by the time I presented with my multiple and fairly severe symptoms, my PCP ordered an MRI, although he suspected sinus problems, not an acoustic neuroma. When my large AN was discovered, he immediately referred me to a neurosurgeon. I passed on that fellow, who had little experience with AN's and was evasive about it. Fortunately, my wife's neurosurgen was able to get me an immediate appointment with a neurosurgeon in his practice that specialized in acoustic neuroma removals and had over 30 years experience. He scheduled my surgery within a few weeks and the rest is history. That was almost two years ago. Today, I'm fine.
I regret waiting to see a doctor about my increasing severe symptoms but, on balance, because the MRI showed such a large AN tumor, I was able to bypass the usual ENT-neurologist runaround and go straight to surgery with a highly experienced neurosurgeon. When your tumor is 4.5 cm, there is no question about it being anything other than an acoustic neuroma!
We understand your frustration and trust that you'll get some relief from the new medications and satisfactory answers from the neurosurgeon. I hope your husband also shows more sensitivity to your stressful situation. Perhaps using the not-inappropriate term 'brain tumor' to describe your AN will sharpen his focus and increase his interest in your well-being.
Jim
