WHAT"S WITH CANADIAN NEUROSURGEONS?

Concerns specific to those in Canada

WHAT"S WITH CANADIAN NEUROSURGEONS?

Postby vandy » Fri Aug 26, 2011 5:56 pm

This topic is for the Canadians among us.

I went to the Toronto Western Hospital to receive a consultation with one of their top doctors a neurosurgeon named Dr. Gentili.

I received the same treatment as elsewhere. Wait and See.

He did say some odd things and I was wondering if Canadian Doctors are somewhat too hesitant in comparison to the American doctors. What could be the root cause for this?

The odd things he said made me wonder if he really is that much of a specialist in this field.

1) He said CA's don't cause headaches. What do you think?

2) He said they rarely do surgery on CA in the frontal/temporal/occipital/parietal lobe. Sometimes on re-bleeding lesions in the brain stem. Is this what you heard or learned as well?

3) He also said that CA's don't grow. What is your experience. Has any of your CA's ever gotten bigger in size without bleeds?

Please let me now your thoughts on the Canadian Medical field and their treatment of CA's.

Thanks,

Henk :ugeek:
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Re: WHAT"S WITH CANADIAN NEUROSURGEONS?

Postby kirkmc » Sat Aug 27, 2011 8:50 am

Well, remember that the US is a for-profit health care system in most cases, so doctors are more likely to perform procedures and tests of any kind.

I've never read anything suggesting that any area _other_ than the brainstem was off-limits.

CAs do grow; or they can, they don't always. Mine has since it was first found. I don't think there's any relationship between bleeds and CAs growing. At least I can't think of any logical link.
Two brainstem CAs in the pons. Big Bleed in July 2005, previous, undiagnosed bleeds in 1982 and 1987, and several smaller bleeds in the past few years. I live in a town in the French Alps. http://www.mcelhearn.com
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Re: WHAT"S WITH CANADIAN NEUROSURGEONS?

Postby Elizabeth » Sat Aug 27, 2011 6:45 pm

My guess is that they (Canadian mds) lack the training,experience, expertise, and maybe equipment.

In the "for profit US" I had plenty of doctors tell me no surgery. Mine was in a deep location and difficult to access. They were the inexperienced not cm experts. The doctors that were not cm experts stated that cms are benign and don't cause problems. I knew in my heart they were wrong. I had a list of questions, some of which I knew the answers to. When they answered wrong I knew they were ill informed. Once I got to the real experts....they recommended surgery. I don't think $$$ has anything to do with their desire to perform surgery, they just understand the real risk of leaving an active cm in place versus the risk associated with their surgical capabilities. And I actually appreciate the fact that the surgeons that lacked experience and training wouldn't touch me. Thankfully!!! Both Dr. Spetzler and Dr. Steinberg recommended surgery. Dr. Martin at UCLA was sort of wichy washy. He told me no....then changed to yes after my barage of questions. It was really confusing at the time to get different answers, but seems clear now. The doctors that said no should have said, " You might need surgery, but I'm not qualified to perform surgery or give you an opinion." Unfortunately, I think their egos get in the way of saying there is someone better that could do what he/she couldn't. That would have made my decision making much easier. Best of luck to you and follow your intuition on what you need. You are your own best expert!!!

Mine did a ton of "growing". I think it was oozing while expanding.
I also think headaches are pretty standard, although I was very lucky, no headaches for me. Maybe that is location dependent....not sure. It really bugged me when they told me my symptoms were no way associated with my lesion. As if you are "making up" this crap. I wanted to feel well more than anything..I just didn't! I saw expert after expert looking for answers. ENTs, eye mds, etc...only to find out it was my cm causing all the problems.
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: WHAT"S WITH CANADIAN NEUROSURGEONS?

Postby Cait » Wed Sep 12, 2012 4:01 pm

Hey Henk,

I recently saw a Dr. Warren, a Canadian neurosurgeon, and he suggested that my cavernoma has recently grown and he suggested removing one from my occipital lobe and one from my cerebellum. So maybe Dr. Gentili was a bit of a fluke?
Around 13 cavernomas scattered throughout brain. Life is just a series of "new normals." :)
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Re: WHAT"S WITH CANADIAN NEUROSURGEONS?

Postby vandy » Wed Sep 12, 2012 8:20 pm

Hi Cait,

Thanks for sharing. Glad to hear you have had a very positive experience with Dr. Warren. Can you provide a few more details about him? Does Dr. Warren have a lot of experience in removing cavernous angioma? Which location is he in ? Also, what kind of services are provided would be very beneficial knowledge for people in that part of the country. You are out west in BC, if I am not mistaken? Have you decided at all on surgery? What are some deciding factors for you? Wishing you the best.

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Re: WHAT"S WITH CANADIAN NEUROSURGEONS?

Postby Cait » Thu Sep 13, 2012 5:56 pm

Honestly, I'm a little concerned about appearing to recommend Dr. Warren because I really don't know much about him at all. He works in Victoria, BC, and made a great impression in his office. I'd recommend him in terms of patience and personality etc, but I don't know anything of his surgical background and track record. I asked him if he'd operated on cavernomas and he responded with a confident, "Oh, yes." but I didn't ask how many times he'd operated. From what I gather, he's usually operated on them only in emergency situations out of necessity (I'm gathering that Vancouver Island, or at least my neck of it, hasn't had a vascular neurosurgeon in the past).

Monday was my first foray into the world of neurosurgery so I really don't know much about it and know pretty much nothing of what's offered here currently and what the reputation is of its services. I ended up at this neurosurgeon out of caution in case I need an emergency surgery in the future, not expecting any recommendation for a planned surgery (I'd never considered it before). I'm waiting to hear what Dr. Fleetwood has to say before I start thinking too seriously about it ('cause from what I read on here, doctors' opinions can really vary). I guess it all comes down to how inevitable I think these bleeds are. Apparently when you add up just my major cavernomas (not counting all the little suckers) I have a 40% chance of a bleed per year, which is decent I suppose. My husband and I want to travel and need to for the work we're planning on and planned surgery in Canada is sure a lot better than emergency surgery in Thailand...

Basically, I'm feeling pretty healthy these days with only very mild weakness/coordination problems on the one side so it feels like surgery would make things worse rather than better in terms of my current state. But if we're looking in terms of the future and a future bleed, surgery is the better option 'cause I have a few cavernomas that are in places to do some pretty significant damage -- one right on my visual channel for my left field and another that has a good chance of leaking into my spinal fluid (if I understood Dr. Warren correctly).

Anyway. This is much longer than I intended. Thanks for your interest! Hopefully someone else will benefit from my musings. :)
Around 13 cavernomas scattered throughout brain. Life is just a series of "new normals." :)
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