re: angioma and RSD

Concerns specific to those in Canada

re: angioma and RSD

Postby sherbeas25 » Mon Dec 21, 2015 4:12 am

I would like to know if anyone knows anything about a relationship between angiomas and RSD and Im looking for a reputable dr. in the toronto dr. knowledgable in this are for my daughter
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Re: re: angioma and RSD

Postby Elizabeth » Mon Dec 21, 2015 5:52 am

I have not heard of RSD before, but there are several members affected by central pain syndrome (CPS), a poorly understood nerve pain often characterized by a burning type of miserable pain. Hopefully someone in Canada can help you better than I can.
Diagnosed September '09 with one CM centered in the right insular cortex/basal ganglia. Saw many, many doctors and had surgery 12/10/10 with Dr. Spetzler. I am thrilled to have this bleeding thing out of my head even though I suffered a stroke during surgery. Have had/ continue to make an amazing recovery. http://www.thankfulforeveryday.blogspot.com
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Re: re: angioma and RSD

Postby Elizabeth » Mon Dec 21, 2015 5:38 pm

Feel free to reach out to shawnm26 if he doesn't chime in here. I'm pretty sure he's the leader in Canada. He can probably help you a bit. ;)
Diagnosed September '09 with one CM centered in the right insular cortex/basal ganglia. Saw many, many doctors and had surgery 12/10/10 with Dr. Spetzler. I am thrilled to have this bleeding thing out of my head even though I suffered a stroke during surgery. Have had/ continue to make an amazing recovery. http://www.thankfulforeveryday.blogspot.com
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Location: Los Angeles

Re: re: angioma and RSD

Postby shawnm26 » Tue Dec 29, 2015 10:50 pm

Hi sherbeas25,

I am not familiar with RSD and if it is associated with CCM's. Are you referring to Reflex Sympathetic Dystrophy ? If so, I have heard of a few people with CCM's asking if other people have hot sensations with their limbs? Other that that sorry I am not able to help you out with that answer as I haven't heard of the terminology yet. I am curious to know if there is a link, please keep us updated.

Regarding Dr's in the Toronto are there are many good Dr's. For the past few years I have hosted a Canadian conference in Toronto. Last year we had Dr. Loch Macdonald from St. Michael's Hospital as a guest speaker. He is very well versed in this area. Another Dr. we had as a guest is Dr. Chris Wallace. He is now at the Kingston General Hospital in Kingston. Both of these Dr.'s would be a great starting point. I would also recommend the Toronto Western Hospital. This is where Dr. Wallace worked and was my neurosurgeon in 2009. Dr. Tymianski is a great Dr. at the Toronto Western Hospital. The info for these doctors is available online.

I hope this helps a little bit. Please feel free to contact us anytime at angiomaalliancecanada@gmail.com
or visit www.angioma.ca (we are currently working on the website)

Have a happy and healthy day.

ShawnM
President
Angioma Alliance Canada
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