Ontario/Canada Status

[mesafinn]

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.

[mk]

Hello and welcome, although of course I am sorry that you are dealing with an AN diagnosis.
I guess I will be the first from the "Canadian contingency" to chime in.
It seems to me that you are already quite well informed, and ready for research. For your message it is implied that you live in the GTA, is this correct?

Your AN is on the small side, so this gives you plenty of time for research and consultations. Yes waits can be longer here, but I found that once you are "in the system" things move at a reasonable pace. The system generally operates on the premise that more urgent cases have priority. For example because of my larger AN, I was able to see all the specialists I was referred to (5 in total) within a 4 month period. It might take longer for less urgent cases.

First of all, do see Rutka. He is considered the "guru" and has tons of experience. Of course being an ENT he does not operate by himself. He used to operate with a very well known and respected neurosurgeon, Dr. Guha, who unfortunately passed away. I suspect that what your friend mentioned might be related to the change in Dr. Rutka's team because of this.

Second, get a referral for the GK centre at TWH. The trick here is that even if you are not interested in radiation, most of the well-known neurosurgeons in Toronto work with the GK centre, so you will get a rounded opinion about radiation vs. surgery. Ask to see Dr. Cusimano there, it is much faster to get an appointment with him there than to wait to see him at St. Micheal's. Dr. Zadeh is also a member of the GK centre.

The other major centre is Sunnybrook: Drs. Chen (ENT) and Pirouzmand (neurosurgeon). You should see them too. Dr. Pirouzmand trained with Dr. Cusimano. I got the referral for Dr. Pirouzmand from the GK centre.
Generally what I found in general is that since there is no personal profit factor, most of the doctors will give you their unbiased opinions about what they believe is best.

Regarding success rates compared to the States, I think it has much to do with number of operations and experience. Consider that Canada has a population of 35 million, which is much less than California alone. It would be useful to get involved with the Canadian ANAC, I know that they have quite a few meetings in Toronto, and for sure you could get very useful information from people that have been treated at TWH and Sunnybrook.

Outside Toronto, as you mentioned there are the CK centres in Ottawa and Hamilton. There are relatively new so I don't know how much experience they have with ANs. There is a very well known neurosurgeon in London Ontario, Dr. Parnas (?? if I remember well) at the London Health Sciences Centre.

Last but not least, Dr. Akagami is in my opinion one of the best neurosurgeons in N. America, but he generally operates on larger tumors/more complicated cases and he prioritizes in terms of urgency. I remember him telling me that smaller tumors might have to wait for more than a year.

Once you have a few consultations under your belt you will have a better idea of what your options are and which approach might be better for you. You mentioned that you have almost full hearing, and it is generally quite difficult to preserve hearing with surgery - from that point of view radiation might offer a better chance.

Don't hesitate to ask questions here, that's what we are here for.

Marianna

[Kathleen_Mc]

P:
First off I do not know Dr. Rutka however someone I do know is his patient and she is not very happy with his care (different type of tumor though).
I initially was operated on by Dr. Gintilli at Toronto Western, wonderful surgeon with a terrible bedside manner. When my regrowth occured and I was ready to have it removed he wouldn't do it saying he couldn't because "it's not medically required" hence I got myself referred to Dr. Nedzelsky (not sure if I spelled this correctly) at Sunnybrook.....here I found an wonderful doctor who actually has a personality. Although I remained in watch and wait for a couple of more years he did then removed the tumor for me even though "it is not medically indicated at this time", I wanted it done before it HAD to be done for various reasons. He did speak of having gamma knife instead but respected my reasoning for wanting surgery at this point.
You may want to try to see Dr. Ned at Sunnybrook.
Yes having an AN can be very frustrating, not many doctors are knowledgeable about them and require OUR education!
Take care, Kathleen

[Echo]

Hello P,

I'm another newbie to this site and I am from Ontario. As far as distinctions between the hospitals, Sunnybrooke is located more midtown, and is not connected to UHN.  The University Health Network comprises 3 hospitals all in downtown Toronto - Toronto General, Western and Princess Margaret. Lastly, St. Michael's is another downtown hospital that is not connected to UHN. If you are able to see Dr. Rutka at Toronto General, he will most likely set you up with referrals to meet with Dr. Tymianski, Neurosurgeon at Toronto Western and Dr. Laperriere at the Gamma Knife Center in Toronto Western. All these specialists are very well known within Toronto's Acoustic Neuroma community and all have excellent reputations.  Vestibular testing and rehab can be done at Toronto General and Sunnybrooke, but not at St. Mike's.   I can tell you that Dr. Nedzelsky at Sunnybrooke is sort of retired - he does consult work now but not surgery from what I've been told. Definitely see Dr. Cusimano at St. Michael's. The bonus in meeting with Dr. Cusimano is that he is a Neurosurgeon at St. Mike's and also does Gamma Knife at Toronto Western so he is perfect for providing an opinion on how your specific case would apply to each treatment. If you are able to contact the Acoustic Neuroma Association of Canada - Toronto location you will be provided with a wealth of info and attending their bimonthly meetings you can get further info on specific Dr.s. 

Cathie

[opp2]

 I had a message typed and posted, then realized you had 27 posts and had determined Radiation was the best route for you.

I hope all is going well..Glad to hear our mk is a good source of support for you...she's a good egg.

[mk]

Hey Nikki, good to hear from you. I hope that everything is going well.

Marianna

[opp2]

Hi Marianna, things are great thanks.

Some side effects from either scar tissue or stress, but otherwise the last MRI was clean and i'm as busy as ever...you?