I reached out to ANAC two days after my MRI in search of information. Serendipitously, the Toronto chapter of ANAC had a support group meeting that evening. That support meeting changed everything for me. Listening to other people’s stories, I started to realize that I wasn’t alone in all this. What I also learned is that no two people have the same experiences and, while we all had AN’s, everyone’s journey was different and deeply personal. The people were also incredibly supportive and, collectively, they were an amazing resource for information and help. I walked away from that meeting feeling a lot less terrified and I felt empowered to face my AN head on.
- David Ellison, Toronto
Although I didn’t find the AN Chapter Group until just before my surgery, I continue to attend as many meetings as I can and it’s been 6 years! I want to share my journey and help newly diagnosed individuals, but also find it helpful to share my frustrations around the “new normal” with people who understand what I am talking about. In addition, I get to hear about topics of interest such as tinnitus or hearing devices when special speakers join the group. It’s a great way to connect, learn, and help ease the anxiety having an acoustic neuroma and I have made life-long friends there as well!
- Linda Steele, Toronto
A huge thank you to ANAC! At the symposium in Toronto, I learned of the work being done at Toronto Western to treat Acoustic Neuromas. At my checkup with my ENT specialist, I requested a referral. It was with my consult with Dr. Zadeh I learned I was a candidate and decided on Gamma Knife. Dr Zadeh and the team at Toronto Western was so very thoughtful and professional. Without learning of this work through ANAC, I would still be "watch and wait". Thankfully, now, I still have some hearing in my left ear and hope it stays for many more years!
- Joan Lawson, Kitchener
At the time of my diagnosis, I was happy to wait and watch for some three years. But in the meantime, I had searched the Internet for as much information about these types of tumours as I could find. This is not always a good idea as you can get a lot of misinformation from the Internet as well but I am glad I did as my search led me to ANAC.
It was through ANAC ‘s website that I was introduced to an amazing group of people and its symposium in 2014. When my tumour started to grow more rapidly I began to look closer at treatment options.
This led to me joining ANAC, becoming a patient of the fantastic team of doctors at Toronto Western Hospital, receiving gamma knife surgery for treatment of my tumour and finally communicating with other members of ANAC and attending a support meeting.
The support of ANAC has been amazing. It’s interesting to talk to other people with the same issue but whose paths take very different directions when it comes to treatment. It really helped me to determine what was best for me. It’s been almost two years since my treatment and I continue to reach out to ANAC for support. I also attended the latest symposium held in June 2016.
My tumour growth has stopped with the treatment I received but I still attend support meetings and my involvement with ANAC will continue. The symposiums that are organized by ANAC are so informative I plan to attend any future ones. Please become a member of ANAC so they can continue their work in providing excellent support.
- Heather Brassem, Blue Mountain, Ontario
My story started in the Spring of 2016. I had finally found a family doctor and was thrilled. During that routine exam, I casually mentioned that my right ear had begun experiencing some mild tinnitus and maybe even a small blocked feeling. She was sure it was nothing that couldn’t be resolved with a nose spray, and instructed me to try that for a month and to return if there was no change. I can assure you that I never would have gone back to see my family doctor a month later had it not been for something else that I was there for, that was unrelated to the Acoustic Neuroma. As I was at her office getting ready to leave, I was almost out the door when I turned around and mentioned that the ringing was still in my ear, despite using the nose spray as instructed. She wrote me a referral to see an ENT, and I left it on the backburner for the next few months.
Sometime in August of 2016 I thought to myself that I really should make that appointment with my ENT! I was seen approximately 2 weeks later, had an audiogram on the spot (which showed mild hearing loss in my inner ear), and had a private MRI the following day. Within 3 days, I had a call from my family doctor letting me know that what I had was a “Schwannoma”. Sounded harmless enough. She instructed me not to Google. I respected that advice for a day. What I read was far more serious. A brain tumour in a location with tons of nerves. By the time I saw my ENT, I knew everything. The size of my Acoustic Neuroma is 1.4 cm x 1.6 cm x 1.4 cm. It is located in the ear canal but bulging out and slightly pressing on the brain stem. Right now I’m being followed by a neurosurgeon as we watch and wait, tracking the growth and my symptoms. My hearing is still quite good, occasionally I’ll experience up to a couple of weeks of dizziness at a time but nothing too crazy. No vertigo and no real pain. Headaches come and go, making me feel like my head is in a vice, but they don’t take over my life. I am thankful for all of the support, counsel and guidance I’ve received thus far from the Acoustic Neuroma Association of Canada. It would have felt like a lonely place to be without this dedicated team that has a true understanding of what I am going through as I wrestle with decisions that can affect the rest of my life.
- Melissa Roussakis (Mellette), Montreal, Quebec.
ANAC provides a safe space where AN patients can gather -- either physically at local chapter meetings, or electronically through the ANAC website – and freely share their experiences and concerns. Equally important, they can find accurate and up-to-date medical information provided by the medical professionals who contribute to its newsletter and website, take part in its Symposia, and/or sit on its board of directors.
Like a wandering Bremen Town Musician, I followed a “light in the forest” beneath Casa Loma to a Toronto Chapter meeting. I was warmly welcomed there, and have since learned so much. That’s not to say I wasn’t thoroughly presented with my options, nor had my concerns patiently addressed by my otolaryngologist since my diagnosis almost three years ago. But ANAC is vital in providing patients with the ongoing support that is virtually impossible for physicians with busy practices to provide.
In turn, please support ANAC’s valuable role through becoming an annual member for just $45 (that’s less than the cost of ten fancy coffees at Starbucks!), and also by exploring the many creative ways you can raise funds on an individual basis. ANAC’s launch of its new-and-improved website will surely benefit all of us, but ANAC needs our ongoing support to fully succeed. Thank you!
- E. Judy Haust, Toronto, Ontario.