Hi Carol and welcome, although I am sorry you had to join this forum.
I am also from Ontario, from Kingston, so not too far from you, but was treated for my AN in Toronto.
OK, so take a big breath. This diagnosis is shocking, but this is not a life threatening condition and it is treatable. What's best is that you caught it while it is not too big yet, giving you all options for treatment, surgical or radiation (probably, although you would have to confirm this with the specialists). And you have plenty of time to do your research and decide on the best course of action.
About the referrals, given that this is a benign condition, it might take a bit longer to see the specialists than what you would like, but the most important thing is to see the right people. Sunnybrook has many specialists, Dr. Schwartz who specializes in both surgery and GK is the person to see there (another forum member, Vivian from Toronto is seeing him as well). Dr. Rutka is the ENT to see in Toronto - highly experienced in ANs, many here have him as their doctor. I would encourage you to ask for referrals for these doctors.
As for the symptoms, your ENT is proably right that headaches are not a common symptom for untreated ANs (a bit more common after surgery). But, as you will see here there is nothing "common" or "unusual" for AN patients, and every individual may experience very different symptoms. Many of the symptoms that you are describing have probably to do with a partially functioning vestibular (balance) nerve, which is being slowly destroyed and the other side is trying to compensate. This can cause fatigue, because your body is constantly trying to adapt - there is a great link to an article, which I cannot find right now (but someone may chime in, Sue perhaps?), which explains all this. Ringing and tinnitus and hearing loss are of course very common here and a prime reason for being diagnosed. Disturbances in taste probably mean that your trigeminal nerve is affected, which is not uncommon for ANs of your size.
As for tension in the shoulders, this sounds to me like more stress related - and having been diagnosed with a condition like this can cause a lot of stress and anxiety. I always feel tension in my shoulders when I am very stressed out (or when I type on the computer for long hours - same goes with pain in my right arm).
I know it is frustrating having to wait for your consultations, but take advantage of this time by doing a lot of research - this forum is a great place for this. Then once you visit the specialists you will be informed and you will go there armed with questions. One thing that I regretted is that I got an appointment fast with the neurosurgeon (because he had a cancellation), and I hadn't done any research. I can say now that I didn't get any useful information from that visit.
Don't hesitate to ask questions - that's why we're here for.
Marianna
