Hi All,
I've just been diagnosed with a 2.6 cm x 2.3 cm AN (I didn't get a third dimension like most of you seem to have, odd???) (edited due to a finger problem which made me type mm instead of cm!!!)
It all started back in 2006, when I went to my GP with tinnitus, vertigo, ear fullness, distorted hearing left side (inability to use telephone). She initially thought Meniere's but said "there's a slight possibility of an acoustic neuroma". She referred me to an ENT. After checking me out, having me come in for an audigram (normal both ears), he told me I had a "dysfunctional eustachian tube". No reason why, no treatments, no prognosis. A real helpful guy. Told me that since my audiogram was normal, I didn't *really* have hearing loss on the left, it just seemed that way because I was hearing differently out of each ear!! My GP suggested antihistamines/decongestants - they didn't help.
The vertigo eventually subsided, I began to be able to hear out of my left ear (i.e. use the telephone with it again), and the ear stopped feeling like it needed to "pop" all the time. I did still have a difference in hearing with the two ears (the dial tone was my testing device, and it always sounded flat with the left ear).
In summer 2010, I started having vertigo again and when it happened, I also got a roaring/pulsing noise in my ears and the hearing seemed to fade on the left. It would only last maybe 30 sec. at most. In fall 2010, I started noticing the left side of my face feeling a bit numb and I had a small lump in front of my ear, and I went to my GP, she blamed in on dental work (I had recently had a cleaning, but that's it) and sid the lump was a swollen lymph node. After several visits to GP and dentist (nothing found), she finally referred me to an ENT (same one as in 2006).
Go to the ENT, he tells me the lump isn't a lymph node, it's the parotid gland. He schedules a fine needle aspiration biopsy for the following week. I have to make a separate appointment to talk about the vertigo! The aspiration just draws up clear liquid, he tells me it's probably just a cyst. I have an audiogram (so I can see him about the vertigo), and I notice that I'm missing a lot with the left ear.
When I come back to discuss the results, he does a few checks, tells me I have hearing loss in the left ear (it's only in the high frequencies, the rest is normal) (right ear still excellent). Tells me I have benign positional vertigo, gives me a sheet of exercises. Tells me it's not an acousitc neuroma but that he wants me to have an MRI to find out why I've got hearing loss in just one ear.
Eventually, 3 months later (pretty good time frame actually for our system), I get my MRI (no contrast). When the tech says that if I they want one with contrast, my appointment will be in the daytime, I'm pretty sure they've seen something.
Two weeks later, I pick up my copy of the MRI report & disk. This is how I find out I definitely have an AN. MRI report refers to mass effect, and pressing on the brainstem. The day after, I get a call from the ENT's office to come in.
Go in 2 days later, ENT seems very unconcerned about the whole thing. I ask why I didn't get sent for an MRI 5 years ago and he goes into a big rant about how they can't send eveyrone for MRI's blah blah blah. Very defensive. Doesn't want to answer any questions about neuromas or surgery - he's referring me to another ENT who does the surgeries (Dr. Westerberg here in Vancouver). I'm rushed out the door after less than 10 minutes!!
I phoned Dr. Westerberg's office myself to see when my appointment is going to be (since the first ENT forgot to tell me about the MRI appointment), only to be told it will be a few weeks before they even get to the referrals and they are already booking into next year!!
So the only info I have on my brain tumor is what I've found on the internet.
I go to my GP, and she tells me they're slow growing and not to worry and if it was her, she wouldn't be panicking about it. She seems to think that I'll get in to Dr. Westerberg faster because the receptionist can't make the decisions of how quickly I should be seen.
Through another doctor, I've also gotten a referral to Dr. Akegami in Vancouver and I have an appointment to see him in December. I've also had my MRI sent to the Winnipeg Gamma Knife centre for a consult.
Looking at the treatment options, I think that only surgery or radiation are my options, seems too big for a W&W.
I'm very concerned about surgery. Sounds like there can be a lot of complications and a long recovery period. I have a physically and mentally demanding job. I'm on my own so I don't have anyone who can look after me if there's a long recovery period. I have lots of useful hearing in my left ear (I can still use the phone with it, and unless the environment is very noisy, can hear conversations to the left just fine). My face just tingles a bit, but functions normally. Balance is only an issue when standing on one foot or turning suddenly. I can move my head around without experiencing vertigo. A cure that could be worse than the disease doesn't sound very appealing. My friends tell me it's just that people put up the bad stories not the good ones.
Radiation sounds like it's got a much quicker and easier recovery period. Downside is the "thing" is still in there and could grow. I gather they also swell from the radiation and this could cause more problems with the nerves/brain. Depending on what site you read, GK has less or more complications than surgery!
I'm very concerned about the facial nerve. My job involves talking to people too, and I need to be understandable and not to cause them distress wondering what's wrong with me.
Any Canadians on here gone to Winnipeg GK Clinic?
Thanks for listening to my rant!
Lorraine
