Replies to This Discussion

Permalink Reply by Melissa Gomes on January 11, 2012 at 5:00pm

Hi Gina, I am from the Toronto area but have been treated at toronto western for over 12 years.

Permalink Reply by Jan Heydon on January 11, 2012 at 5:06pm

Hi.. I'm from Alliston .... heading for Western on Friday for AVM surgery

Permalink Reply by Jan Heydon on January 11, 2012 at 5:14pm

I had embolization in May which was partially successful.. so Friday is the complete removal... just my luck - a craniotomy on Friday the 13th LOL

Permalink Reply by Melissa Gomes on January 11, 2012 at 5:13pm

I think it is a great hospital with a great team of doctors and nurses. I feel comfortable and safe there. Jan good luck with your surgery I truly believe you are in great hands. Can't wait to hear how it went.

Permalink Reply by Sean on January 11, 2012 at 5:14pm

yes - been treated by Dr. Simons for several years now at the TWH on Bathurst. Heading for my 5th embolization in a couple weeks. They do good work, and have been very attentive to my needs. Is it your first embolization?

Permalink Reply by Sean on January 12, 2012 at 8:55am

As Melissa said, an embolization is a medical procedure which blocks problem blood vessels , typically an AVM that is either causing problems, or is likely to cause problems in the future.

The material they use to block a blood vessel is called an 'emboli', it can be glue (n-butyl cyanoacrilate), or metal coils, or a number of other different means - each specific to the type and location of the target blood vessel. I have had all manner of embolization, and am happy to share those experiences with you if you wish.

Permalink Reply by Sean on January 13, 2012 at 7:04am

Gina - do keep me posted on prognosis/recommended options. When is your next appointment?

Permalink Reply by Melissa Gomes on January 11, 2012 at 7:15pm

Embolization is when the doctor shoot a glue like substance into the veins to block them from further blood flow the procedure is done the same as an angiogram except you are asleep for embo. Sometime doctors can eliminate the avm completely with the procedure or reduce the size so it is easier to operate on or to get it smaller then 3 cm so they can do gamma knife radiation. Hope this helps!

Permalink Reply by Melissa Gomes on January 12, 2012 at 11:45am

Gina I was wondering how did you find out you have an AVM?

Permalink Reply by Alicia G on January 13, 2012 at 4:15pm

Hey there,

I was originally at Sick Kids Hospital but once I turned 18 they switched me to Toronto Western. I've only been there once for tests but they were great there. They really helped me when I was a bit nervous and were very nice.

Permalink Reply by Warren on January 14, 2012 at 6:09pm

Hi,
I first went to Western in 1983. I don't wanna brag but it was the biggest AVM they'd seen at the time. I was told I had two years to live at that time.... Later that became 50. I'm almost 52.

In ~ 1991 after a big grand mal I lost the use of my left hand, shoulder and leg.

I used to make a pilgrimage every year to the AVM clinic but found it to be a waste of time -- they didn't do anything.

I used to get auras about twice a year. The last seizure I had was a doozy in 2002. After 19 years they tried something unique for this group of Neurosurgeons and sent me to a Neurologist.

I haven't had an aura or seizure since seeing him and adding clobazam to my 'diet' (ensures that the dilantin is doing it's job)

Umm (sorry) yes I've been to TWH

Permalink Reply by Jennifer on January 29, 2012 at 7:13am

thats great let us know what happens how long did you have to wait for your appointment? It seems like i have been waiting forever for any kind of answers or appointments

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