Hello All--
Thank you to the many here who have posted their bravery, their experience, their insights, their fears, and their successes with so many. As someone recently diagnosed, I have found solace and support here and am grateful for your meaningful contributions.
I'm writing because I was wondering if the "Canadian contingency" wanted to chime in with recent information on pre-treatment care. As my GP admitted he had limited knowledge (when he told me, he handed me an Internet print-out of "what I had,") I was referred to an ENT who was arrogant and dishonest. Within a matter of minutes he said he "had not treated many patients with an AN" but then said he had "treated many patients with an AN." He would not make eye contact, did not answer questions, asked me to prove I had an AN (despite the MRI in front of him), and it became obvious my diagnosis was about his ego rather than about my health.
Nevertheless, he's referred me to Dr. Rutka, but I anticipate that will be a long wait since the ENT didn't seem to take this seriously.
I spoke with a neurosurgeon in the U.S. who is also a Canadian citizen. He said that five years ago he would have encouraged me to see Dr. Rutka and believed in his success rates. But he quoted the professional literature and said that treatment out of Toronto is not showing the types of results that he believes it should. He couldn't pinpoint why but the published research suggested there are more complications in Ontario that in the States---regarding acoustic neuromas. He said he was telling me this reluctantly--that he had family in Ontario who benefited from the health care system here. But he said when it comes to AN, he believed I could be better served in the States, if it was financially possible.
I would prefer to be treated in Canada, but....like I suspect anyone here....I want quality of care. I am fortunate that, despite the AN (1.4 cm) pressing against the hearing canal, I still have 95% of my hearing. The ENT said "to wait," but I don't want to wait to become further symptomatic and potentially lose more of my hearing. I'd like to take my good fortunate of early discovery proactively and minimize future complications. I also have not gotten good insight into where, exactly, the AN is located (growing toward the brainstem, in danger of entering the canal, etc.??)
I have sent my MRI to the House Clinic in LA for their free consultation (thanks to the lead from this organization), and I am doing extensive research on surgery, radiation, and watch n wait options. For my fellow Canadians, I welcome any thoughts and insights on how they navigated the system. It is, frankly, in Canada's interest to follow the "watch and wait" approach because it limits individuals "clogging the system," particularly in Ontario which seems overwhelmed in terms of patient care. It is, frankly, in U.S. interest to advise treatment because then there is financial benefit to someone.
This is all confusing enough without weighing the financial ramifications (anything done in the States would require out-of-pocket while anything done in Canada will cause significant delay as each specialist seems to require a several week/months wait). But, it is the reality, and so I'm trying to cope as best I can with the amazing support I've found here with my lurking.
What I'm asking for is a March 2013 update on suggestions anyone here in Ontario (Canada) may have. I've read about Dr. Akagami in Vancouver (seems good, but I understand it's about a four-month wait to see him??); I've read a few things here about Ottawa and Cyberknife possibilities, and I hear consistent names in Ontario like Rutka, Chen, and Cusimano. Also, can anyone weigh in on the distinctions between Sunnybrook and Western? I've also heard of Dr. Gelareh Zadeh (Toronto) but have seen little about her here.
In closing, to those of you who have so willingly shared your experiences, I know I am not alone in the appreciation. You have taught me the importance of "paying it forward," and I hope to do that for the next person---believing that that goal provides my own inspiration and hope...
Peace,
P.
