I need advice on best Canadian Neurosurgeon? I have seen two so far they can’t help my daughter. Any @Canadians ? She had a brain bleed and stroke almost a year ago and still waiting on treatment.
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Hello Bella.
I have had a long journey with a cerebellar AVMF, happily over after 4 years of surgeries, including Gamma Knife.
The medical team was led by Dr. Michael Cusimano. Michael and his team were excellent professionals during the complicated treatment of my case.
I also highly recommend Saint Michael Hospital and The Western Hospital, both in Toronto, where I was assisted.
This is the information about Dr. Cussimano found in Google’s
injuryprevention@smh.ca
(416) 864-6048
(416) 864-5017
Location
St. Michael’s Hospital
Address:
38 Shuter St., Bond Site, 2nd Flr, Toronto, Ontario Canada M5B 1A6
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Here is two that I dealt with in Winnipeg Health Science Center, both were outstanding. Dr. Sylvaggio referred me to Dr. Kaufmann as the decision was Gamma Knife. Both are neuro surgeons with additional specialties, Sylvaggio does embolization and Kaufmann Gamma.
https://manitobaneurosurgery.ca/about
I have nothing but positive things to say about all my experience with both Dr.s and their teams.
John
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Thank you so much for the info I will definitely request an appointment with Toronto Western. My daughter is only 12 so they keep sending us to kids hospitals and they might not see as many AVM patients.
Thank you so much. I have doctors in the USA willing to help and sent me a treatment plan for her. I rather stay in Canada if I can find someone with skills to help us here. Do you know how to navigate the Canadian health insurance to pay for a surgery in another country? Again thank you!!
Hi Bella!
Sorry if I’m late, but as a child who has gone through this, I can tell you my surgeon Dr. Peter Dirks at sickkids is a great surgeon, he’s wonderful, and does a great job.
That is if your daughter is under 18.
Toronto western has the other surgeon, not quite sure of his name. Hope this is helpful!
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Thank you so much! She is 12 and currently being treated by a surgeon at sick kids. He works under the supervision of dr Dirks I have never met him but I see he’s name in all my papers. My daughters case is very complicated and I’m loosing hope that they can help her.
I’d recommend Dr. Ivan Radovanovic at Toronto Western Hospital (Krembil Brain Institute). He specializes in vascular brain surgery (includes AVMs) and has the most experience operating on AVMs of anyone at Krembil.
He performed my AVM surgery and I’ve had exceptional results.
Wishing you luck 
!
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If the decision was gamma knife, I’m assuming you must be working with Dr. Kulkarni, who is also great. Really great guy, and of course as I know gamma knife isn’t always successful, if the option for craniotomy is there, as scary as that can be, Dr. Drinks did mine at 12 with very little complications. Glad I could help!
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I will pray for your daughter and your family to find the right doctor to care for your precious daughter.
My heart goes out to you and your family.
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Yes Dr Kulkarny is her doctor he is so nice and has been so patient with us. Right now there is no decision. Surgery is not possible and he said radiation is a maybe we might just watch it. I’m getting the finally decision in September and if they decide to just watch it I don’t think I can just leave her like this so I’m in a way getting ready to keep my search for treatment ;( I’m praying he can help her he is great.
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Thank you so much prayer is what keeps me going 
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I’m sorry to hear this. Is embolisation a possibility? If not I do hope you find another option. Thoughts and prayers to your daughter.
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Embolization is not an option either. Her AVM is diffused so is complicated to treat. I was told by one of the top surgeons that the way to go is surgery but because is so complicated only a few doctors might consider it. Lest wait until September and see what they say. 
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Where in Canada do you live?
My daughter was treated at McMaster Children’s in Hamilton. She had had two open brain surgeries performed by Dr. O. Ajani and several cerebral angiograms done by Dr. B. Van Adel. She was 9 and 11 years old for the surgeries. Both doctors are excellent.
I had my avm rupture which caused a hemorrhagic stroke on the right side of my brain. I was treated by DR.Mehdi Shahideh at trillium hospital in Mississauga Ontario. Not sure where you are in Canada. But he is a great neurosurgeon. When I came to my senses after my surgery and my coma and everything the first thing people around me told me was that I was incredibly lucky to have him as my surgeon. When I went back for other surgeries, everyone was always praising him. I had a good experience with him, he’s a good doctor and a good human being overall. If you have the ability to get to Mississauga, Ontario, I highly recommend him. Ofcourse I don’t work for him or get paid to promote him or anything. But I just want to help out the as much as I can.if my niece or s family member needed to see a neurosurgeon I would take them to him. I wish you the very best and hope your daughter makes a quick recovery!
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Thank you so much! We are actually about 30 minutes away from Mississauga! Thank you for the info I will definitely look into this doctor. Our doctors now are amazing but I think is just a hard case.
God bless
Bella
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Diffuse does change the game, I think. I’d say that is probably your biggest qualification for who you choose to work with / the advice that you get because the impression I get is that it isn’t half as common as any other kind of brain AVM, so reaching out into the States may be a good idea.
I don’t remember who else has a diffuse AVM here but I think there are a few (like, very few). If you’ve not already, I’d have a look to see what advice they’ve been given, too / who they saw, if treated. I haven’t created a group for people with a diffuse AVM, though I think there may be a case for creating a space for the few of you to make sure you share the unique aspects of treatment with each other, can find relevant information from each other.
If there’s anything I can reasonably do to help you get the support our information you need, let me know.
Best wishes,
Richard
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Is Ottawa an option for you? The team at CHEO is incredible and Dr. Munyao Nzau is exceptional. I had a much more positive experience there than at Sick Kids.
My first Sick Kids doctor told me to go sky-diving six months after my bleed! Needless to say, he was fired!
Wishing you all the best!
-Julia
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All,
Please be careful about naming and shaming doctors or practices here. We don’t admit institutions or doctors to have any right of reply, so negative reviews are not allowed.
If you do need to express concerns to others, please do so privately rather than on the public forum for the world to see.
Positive experiences are always welcome in public.
Thanks,
Richard
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