False Creek

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby AlmostClever » Fri Mar 05, 2010 4:05 pm

Leap of Faith - Gotcha!
If you can't explain it simply, you don't understand it well enough. - Al Einstein
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Postby Billmeik » Fri Mar 05, 2010 6:10 pm

so poland looks a little booked up for the angioplasty...what about frnkfurt?
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Postby ozarkcanoer » Fri Mar 05, 2010 6:15 pm

cheerleader,

The animal model would be the piece de resistance..... If it works... if it can be shown to be similar to human CCSVI and also to cause MS lesions (I'm guessing in mice), then the scientific community will be stumbling over their own feet racing to validate this !!! And the scientist (Dr Cooke?) who does it first, he will be a hero !!!!

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Postby Billmeik » Fri Mar 05, 2010 6:32 pm

The animal model would be the piece de resistance..... If it works... if it can be shown to be similar to human CCSVI and also to cause MS lesions (I'm guessing in mice), then the scientific community will be stumbling over their own feet racing to validate this !!! And the scientist (Dr Cooke?) who does it first, he will be a hero !!!!



hold it a proposed an animal test would use clamps for the ccsvi. And it would create encephalomyelitis in the animal. Taking the clamps away would then cure the animal.

Dont know if it will work in something that only lives as long as a mouse. I'm in favour of animal testing on beef...
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Postby ozarkcanoer » Fri Mar 05, 2010 7:32 pm

Billmeik,

I have discussed this with a neuroscientist, a guy at the top of his field. I raised the same concern about mice. He told me they can do amazing things with mice and he thought that mice would be good test animals for CCSVI.

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Postby Billmeik » Sat Mar 06, 2010 5:28 am

A day later I am in self doubt. I mean I have 40 lesions, and enough disability that my 2 main joys, travelling and playing music are difficult, so I have ms, but I guessed that my ccsvi wasnt going to be too bad. So I suggested that false creek get simka and I waited a few months until he would be around since my reading suggested that he was the guy seeing valve issues and membranes and such. Basically he was the guy seeing ccsvi in all the patients that false creek and buffalo were stamping as negatives. But were my results science or were they force of personality?Assemble expert who will tell you what you want to hear not what you SHOULD hear. Dunno. Im happy, but a little cynical about my own manipulations...
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Postby MrSuccess » Sat Mar 06, 2010 12:26 pm

Any more news DizzyLiz ? What have you heard about that important announcement you brought to our attention ? Be careful what you bold letter ....I did this once and was pounced on Big Time . 8O

We all are cub reporters doing the best we can to share CCSVI news - good and bad - amongst ourselves .

Any updates are always appreciated .





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Re: False Creek

Postby pinksapphire » Sun Mar 07, 2010 3:03 pm

I met Dr. Simka too at False Creek. My appointment was on the 4th. He also did my ultrasound with Dr. Cooperburg. I was extremely happy about that. ':D' The staff was excellent too! Do you know how long it will take for the written results or by email?




Gordon wrote:False Creek did a great job.

I was also fortunate enough to meet Dr. Simka while I was there, along with Dr. Cooperberg, who is their radiologist.

Dr. Simka actually did my ultrasound, with Dr. Cooperberg.

I had a great experience but I wish I had talked more to Dr. Simka

Me
:D
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Postby happy_canuck » Mon Mar 08, 2010 3:08 pm

pinksapphire,

I had my tests done Tuesday March 2nd at False Creek and got my written reports when I went back to the clinic Friday for the press conference.

I was very disappointed with the spin the media wanted to put on the conference. Despite Dr. Godley stating he was calling on more Canadian doctors and Canadian facilities to start looking into this, all the media reports (so far) talked about people leaving the country to be treated elsewhere. They taped a lot more than they have reported so far, so maybe something else will come out of it.

As for my reports, I don't fit the classic CCSVI model (if there is one) according to Dr. Simka and Dr. Cooperberg, but they both agree I should have a venogram done. They were unsure if angioplasty would be of any benefit. You can get the reports emailed, but I recommend you also get hard copies mailed to you (they are nicer).

Cheers,

Sandra
National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tinyurl.com/44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tinyurl.com/3wzmkmg</a> ~Facebook</strong><br />
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Postby Jason » Mon Mar 08, 2010 7:50 pm

Well I am now registered for the scans at False Creek on April 15th, I am going to make a mini holiday of it.
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Postby happy_canuck » Mon Mar 08, 2010 10:47 pm

Jason wrote:Well I am now registered for the scans at False Creek on April 15th, I am going to make a mini holiday of it.


Good for you, Jason! May I suggest The Daily Perk around the corner for a great bowl of homemade soup or a coffee and Whole Foods across the road from FC for everything edible, including great deli items, flowers, and more. The clinic is in a vibrant Vancouver location!

Parking is in the parkade access off Ash or take the Skytrain from the airport (Canada Line) and get off at Cambie and 9th. Twenty minutes and you're there! Much cheaper than parking, which cost us the price of several great meals.

The clinic diagnostics is on the street level. I suggest you take your time while there and ask a bunch of questions. Take someone else with you, if possible, to be your second set of ears. They can go in with you to the ultrasound (both my adult sons went in with me). Your appointment is your best time to get answers from the ultrasound. You'll get the images on CD right away, but the written reports take a few days.

The waiting room was all MSers when I was there -- several who I know through Facebook! It probably will be the same when you're there. I strongly suggest you network with those waiting and share stories. It helps. People take the news of a + CCSVI diagnosis differently, so supporting each other is important.

Good luck!

Sandra
National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tinyurl.com/44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tinyurl.com/3wzmkmg</a> ~Facebook</strong><br />
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