I'm posting here because the Canadian forum seems dead, and it looks like a lot of Canadians are on this board too.
My story involves lots of kicking and screaming at people who have listening trouble - trying to get them to recognize/acknowledge/take action on my hearing loss. I developed tinnitus in my left ear in March 2009 which my GP dismissed with a prescription for antihistamines. When the antihistamines didn't work, I was given... another round of antihistamines. Needless to say, this convinced me that there was some kind of mucus plugging my ear and I kept waiting for it to clear. I couldn't hear properly and had lots of challenges. I cried and coped and cried and coped.
Unfortunately, we moved to a new location in July 2009 (Kingston) and the doctor shortage here is brutal. I was confident that I'd be able to find a new doctor - I've lived in a few cities and never had trouble finding a doctor before. After a year long search I gave up and went through the government referral service. The nurse who spoke with me and "triaged" my need for a doctor and then connected me to a new doctor in town, told me that there literally hadn't been a single doctor accepting patients in town for that whole year. So, one year of ongoing tinnitus with no medical help.
Then, being a new patient, with two young kids (aged 10.5 and 6), the focus of the first few months was on getting the kids' vaccinations up to speed, and monitoring my blood pressure (I have hypertension). I did talk about the tinnitus and the mucus that was supposedly blocking that eustachian tube at every visit, but it wasn't till I had my physical in November and I lost all patience and yelled "I am deaf!" that my doctor listened.
He sent me for an audiogram (waited till February 2011 for that - long wait times despite the fact that this is a city with a well-known medical school and is a regional health centre). When I got the results I flipped. I have only 10% of my hearing in my left ear - not even enough hearing remaining for a hearing aid to work. But the news was worse - I got a copy of the audiogram for my own records and read the scribble at the top "retro-cochlear pathology". Naturally, I googled that phrase.
So, while my family was emotionally adjusting to the fact that I am permanently assymmetrically deaf, I'm suddenly totally fine with being permanently deaf, because I've just discovered that the only thing fitting that description is an acoustic neuroma - bigger worries on my plate! My GP, of course, referred me to an ENT to confirm that there wasn't another reason for my hearing loss. The problem being the ENT's 8 month long waiting list! I tried calling the ENT's office to get on their cancellation list, and ended up there in person where they told me that the only way to get a quicker appointment was to have my GP refax the referral with the word "URGENT" on it in bold lettering - that way the ENT would actually read the referral and triage my need to see him. Otherwise, all appointments are booked into the next available time slot by administrative staff without any medical direction on what needs to be dealt with quickly.
My GP faxed that second request practically the instant I asked him to. And that moved my appointment up to... April (cut the wait to 2 months). My ENT is a treat and I wouldn't recommend his people skills. The first "examination" appointment was 5 minutes long and ended abruptly with him telling me he was ordering an MRI to "make sure nothing's growing in your head" then racing out the door, ending the appointment. <Thanks for the empathy and in-depth explanation!>
The MRI was done at the end of June, but my ENT waited 3 weeks before seeing me to deliver the news. I'm pretty sure he was seeing other patients ahead of me, stalling until he had the nerve to face me - especially since his clinic opens at 8:30 and I got there 10 minutes early for a 9 am appointment - how far behind could he be that early in the day? He didn't see me until after 10, and then there was no eye contact as he focused intently on the MRI report before telling me I had an acoustic neuroma. He was so visibly relieved that I knew what it was and he didn't have to explain and when I said I wanted a referral to the neurosurgeon who does this kind of surgery the most often, and was willing to travel to Toronto or Ottawa, he was so eager to start that referral that he couldn't wait to get out of the room and away from me. That appointment lasted less than 5 minutes.
I'm pretty sure he's referring me to Dr Chen at Sunnybrook - although he said "these things grow very slowly so there's no need to hurry and it's unlikely you'll hear from him about an appointment before September". Is that true! Because if so... how can they justify leaving me to stew with my own imagination and hoardes of questions all the way from February to September? Seems rather inhumane to me.
My GP is very annoyed with the delays from the ENT and has promised to get a referral for a second opinion that's faster than the one to Dr Chen. I'm going to ask him to get me in to see Dr Rutka.
So that's where I'm at - oh yeah - forgot to mention the whopping inner ear infection I got Christmas Eve. I was so dizzy I couldn't open my eyes for 4 days. (Lovely for my family - stressful, yuckky Christmas all around). Went to emerg, but they told me there was no connection between it and my hearing loss, despite both being in my left ear. I'm pretty sure I lost some or all of the balance info from my left side at that time. I staggered around for two weeks before I managed to establish some control over it.
My AN is 16 x 10 x 8 mm and is close to the facial nerve. I'm thinking they'll want to operate sooner rather than later because of that. I don't think the gamma knife is a good option for me because I think I have a higher than average chance of regrowth - I had a parathyroidectomy in 2002 for a benign parathyroid tumour and I see on the internet that there is some research being done on people who have a tendency to grow benign tumours. Apparently people who've grown one (the parathyroid tumour) are more likely to grow an AN.
I would love to postpone the surgery as long as possible or find some way to minimize the trauma to my family. I haven't had them tested, but I have been told by parents of kids with asperger's that both my daughters behave like they are on the autism-asperger's spectrum. I don't have the money to pay for those tests myself, so I'm looking for a charity to fund getting them done before any surgery, just so I can tell my health care provider about it so they will realize where the over-the-top behaviours and reactions are coming from. And so maybe we can work on a plan that will minimize the trauma for them.
Anybody ever shrunk their tumour? I'm thinking of seeing an acupuncturist to see if he can - just so I can do W&W for a few years and get my daughters' coping skills up to what I think they'll need in order to go through a surgery with me.
Gael
