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Canada AVM Survivors

A group for Canadian AVM survivors.

Location: regional-group
Members: 126
Latest Activity: on Wednesday

Discussion Forum

Uterine AVM?

Started by honeybeeB. Last reply by Luna on Wednesday. 12 Replies

Has anyone else on this site experienced an AVM in their uterus? I was just diagnosed and I need some advice.

Tags: AVM?, Uterine

From regina

Started by Tanyab. Last reply by Sean Apr 27. 1 Reply

Hi all I'm 28 from regina sk and going to a great doc in Alberta dr. Owen in Edmonton this will be my 4th time getting an embolization on my upper thigh. Does anyone know the risks of extremity avms?…Continue

Where in Canada are we all?

Started by Lianne. Last reply by Julia Apr 16. 69 Replies

I live in the Okanagan, BC just outside of Kelowna.

AVM Walk

Started by Emily K. Last reply by Emily K Mar 28. 3 Replies

Hey - Have any of you fellow canadians done the AVM walk in San Francisco in May? I am thinking about going this coming May, but I think it's really too bad that we don't have one in Canada! Don't…Continue

Comment Wall

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Comment by Kim on May 10, 2013 at 12:32am
Hi Singledad21, I had stereotatic radiation in Vancouver last July. I am not sure what system they use there but the do do the stereotatic radiation in Vancouver and they are amazing there ! If you have any other questions feel free to message me, I'm more than happy to help !
Comment by Singledad21 on May 9, 2013 at 11:08pm
Hello all i hope everything is fine question is Stereotactic radiosurgery and Gamma knife RadioSurgery are the same? Also is gamma knife radio surgery available in vancouver bc canada? Thanks all! God bless.
Comment by Dan Wilhelmus on February 25, 2013 at 6:08pm

Bri,

Sorry to hear of your problems. I have only positive things to say regarding Toronto Western hospital and their treatment of my peripheral AVM. I know that they are the best solution for you. Your doctor should be aware of their existence and, if not, should be able to look it up for you. Best of luck and Prayers to you!

Comment by Bri on February 25, 2013 at 5:44pm
Hi everyone. I am just wondering if anyone here is from
Toronto and if you are, if you could possibly get in touch with me and recommend any places that further investigate AVMs for proper diagnosis and treatment options. Thanks very much. :)
Comment by DeeDee on October 26, 2012 at 9:24pm

Hi, I am new to the group. I have a small, pulsatile AVM on the left side of my head under the scalp about 3'' above the left ear. At this point they don't think it is connected to the brain. I waited 5 months to see a Vascular Surgeon only to have him tell me he couldn't help me & that I needed to see a Neurosurgeon. I have been waiting now for 9 months. Does it normally take this long to see a specialist. I live in Nanaimo on Vancouver Island. I find it most frustrating, is it me or what???

Comment by Jim on June 12, 2012 at 5:52pm

I was wondering if anyone had any luck (or lack of) trying to get life insurance following avm's. I was recently turned down for life insurance and I am looking for help/suggestions.

Thanks everyone.

Comment by Jim on May 24, 2012 at 4:58pm

Great to see a Cdn AVM Survivors forum. I live in Calgary and was diagnosed and treated here. It was a complicated and stressful process which led to treatment at the Alberta Centre for Radio Surgery. All the doctors were amazing throughout the process and so far so good.

Comment by Matthew Dubins on May 24, 2012 at 3:44pm
Hi all,

I'm from Toronto and am suffering from many avms around my spine. I've been getting treated at toronto western hospital, which has helped with my back and leg pain, but i still have difficulty walking and lately have had troubles urinating and still get sore legs. I'm optimistic however that more treatment will at least help with leg soreness and going to the bathroom!

Cheers,
Matt
Comment by Starr Tze on February 7, 2012 at 8:02pm

New neurosurgeon to iRapidConsult

Dr. Stefan Wolfsberger received his degree from the Medical University of Vienna in Austria. Following his residency under the supervision of chairmen Prof. W.T. Koos and Prof. E. Knosp, he was appointed an Associate Professor of Neurosurgery in 2005. Dr Wolfsberger acquired clinical management skills during a postgraduate MBA in Health Care Management at the Medical University Vienna in 2006-9. Using this knowledge, he successfully implemented and certified his department with the ISO 9001 quality management system. His clinical focus is on surgical oncology, including glioma, pituitary adenoma and surgical approaches to the skull base. Stefan Wolfsberger is currently head of the neurosurgical oncology working group of the Department of Neurosurgery in Vienna. Scientifically, he focuses on advanced imaging techniques including neuroendoscopy, multimodal neuronavigation, 3D visualization techniques, surgical simulation and fluorescence-guidance. He coordinates annual international workshops on diffusion tensor based imaging and pituitary endoscopy in Vienna, Montevideo and Mexico City. At present, he is a consultant for Medtronic® navigation systems and a member of the company’s technological advisory board. Since 2008, Stefan Wolfsberger has been developing a Simulator of Transsphenoidal Endoscopic Pituitary Surgery (STEPS) and is an international partner in the Canada National Research Council’s project for the development of a neurosurgical simulator (NeuroTouch®). He is currently on a clinical fellowship at the Department of Clinical Neurosciences, Division of Neurosurgery, University of Calgary with Dr. Garnette Sutherland.

Comment by Lillian on September 18, 2011 at 9:08pm
Hi Starr,

Thanks for sharing your story. make sure you send us a link to your paper to be published in the Medical Journal
 

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Blog Posts

May 2013 Community Newsletter

Posted by Ben on May 24, 2013 at 10:00am 0 Comments

Dear AVMSurvivors Family and Friends,

Celebrating Awareness Months for specific rare diseases are a great way of procuring attention to our cause. By discussing our condition and helping to educate others, our active participation creates…

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confusion as symptoms mount... time for new dr?

Posted by mamaginof3 on May 9, 2013 at 3:13pm 14 Comments

Since last may, the symptoms that sent me to the neurologist in the first place are getting worse. July 11th, the MRI with Contrast found my avm, left frontal lobe. The neurologist I see right now is not concerned about the avm, and only wants to… Continue

HHT Diagnosis or Suspected

Posted by Fish on May 10, 2013 at 3:25pm 1 Comment

My husband has HHT . Daughter has been tested but no results yet. Praying God spares my children. I have two granddaughters. I have another daughter who has not been tested. We found the HHT Center in Chapel Hill after years of nosebleeds. He has…

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Dreams... changing

Posted by Michael on May 2, 2013 at 3:14am 5 Comments

Hello there,

how it's for you? In my case, I have the paralysis since last october 2012. Before that I was very active with cross country running, dogsport, and so on. The good thing: In my dreams I had no Paralysis. I run in my dreams,…

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One year since my bleed, more or less

Posted by tdz103m on May 2, 2013 at 5:34am 5 Comments

I don't know exactly when it happened because I slept through May 1, 2012. All day.

May 2, I was able to move around a bit. May 3 a bit more but by May 4th I was feeling in the deepness of it and told my wife to dial 911 and it was into the…

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Ben's Friends Co-Founder Scott Orn Featured on Thoughtbot Podcast

Posted by Armando A. on April 21, 2013 at 8:00am 0 Comments

After being featured on a number of publications,…

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