I am headed to False Creek, BC on Feb 9-12 for tests

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

I am headed to False Creek, BC on Feb 9-12 for tests

Postby chiromom1 » Thu Jan 07, 2010 3:24 pm

Hi everyone,

Age: 39 female

Diagnosis: May 2003

Lesions: cortical brain, cervical and thoracic spinal cord

Symptoms: Parasthesia both hands so much that I had to give up my Chiropractic practice, severe exhaustion, speech and swallowing difficulties, periods of complete numbness from the chest down. Difficulty walking, Inability to concentrate, memory loss, MS hug.

Drugs: TYSABRI: duration 5 months (youtube diary chiromom1)

Appointment at False creek: Feb 10th to see the doctor for a requisition, then Feb 11th for Doppler Ultrasound of neck followed by and MRV of jugulars and azygous

Cost: $1995 Canadian for everything

This is a long way away for me as i live in rural western Ontario

I will let you know how it goes
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Last edited by chiromom1 on Thu Jan 07, 2010 3:29 pm, edited 1 time in total.
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Postby Mechanicallyinclined » Thu Jan 07, 2010 3:28 pm

For sure let us know. Once I know they have the kinks worked out I may just plan to head there also. I'm just running into roadblocks here.
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Postby happy_canuck » Thu Jan 07, 2010 7:01 pm

Hey chiromom1,

I am sure you're both excited and nervous -- I know I would be. I spoke with one of the women who was scanned early on at False Creek and was given the "there's nothing there" result. She didn't know what to think. I think she gets re-scanned this week. It's good that False Creek are bringing their protocols up-to-speed and I know the one patient said they were very helpful and professional. She did say it took a LONG time and she just had the MRV done, so make late dinner reservations!

There's a bunch of us from BC tracking CCSVI on the Facebook page in my sig -- get in touch with us there or PM me here if you need local guidance. We would love to hear how it goes!

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 Billmeik » Thu Jan 07, 2010 7:24 pm

ya Id be down there soon too, I seem to be going back into remission, losing numbness and motivation....I just want to hear that someone got the results!

You know doctor Simka from Poland is in Van in februasry...maybe you could take your shots to him... hmm I might try that too..
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Postby mangio » Thu Jan 07, 2010 8:25 pm

chiromom1,
Lots of luck with all your endeavours. I'm sorry you have to travel
so far. Did you try the Barrie clinic? - I called them yesterday and
got a good feeling. The receptionist said provincial health pays for
the doppler and if stenosis found they would arrange for MRV paid
for as per their Vascular Surgeons requisitions. Many satisfied clients
I was told. Do you know about this clinic? thanks
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Postby lilsis » Tue Jan 19, 2010 3:37 pm

my sister received a doppler and mrv from false creek today. doppler showed nothing, but i find it interesting the tech said they've done 40 and have not found a single case of stenosis. something seems a little fishy.
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Postby Mechanicallyinclined » Tue Jan 19, 2010 4:16 pm

if it 's not an intracranial Doppler it won't find problems in the head area to my understanding.
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Postby jay123 » Tue Jan 19, 2010 4:57 pm

But why would you spend money on testing? You need to find interventional radiologists to order the testing and the 'repair' for you. Testing will do nothing, if the statistics continue to add up there will be a 90-95% chance you have a problem.
Save your money and find a fixer!
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Postby beerduff » Tue Jan 19, 2010 8:01 pm

jay123 wrote:But why would you spend money on testing? You need to find interventional radiologists to order the testing and the 'repair' for you. Testing will do nothing, if the statistics continue to add up there will be a 90-95% chance you have a problem.
Save your money and find a fixer!


Well that is a lot easier said than done.
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Postby jay123 » Tue Jan 19, 2010 8:11 pm

beerduff wrote:
jay123 wrote:But why would you spend money on testing? You need to find interventional radiologists to order the testing and the 'repair' for you. Testing will do nothing, if the statistics continue to add up there will be a 90-95% chance you have a problem.
Save your money and find a fixer!


Well that is a lot easier said than done.


1- It is very easy not to go get tested and save the money


2- How many letters have you written to try and find a treatment?
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Postby cheerleader » Tue Jan 19, 2010 8:18 pm

False Creek is not following Dr. Zamboni's protocol. If they do not use transcranial doppler testing, they will miss the high stenosis. Doppler also misses the stenosis in the chest (azygos)

My husband also had a "normal" doppler, because the wand couldn't access behind his ears...and he did not have the transcranial doppler. but the MRV showed this:
Image

That's not normal. His left jugular (on right side of pic) was 95% closed. THose curly veins are collaterals. That's not good. His right jugular was closed 80%. Not good, either. HIS DOPPLER WAS NORMAL. Until they get the protocol down...do NOT waste good time and money-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby beerduff » Tue Jan 19, 2010 8:34 pm

jay123 wrote:
beerduff wrote:
jay123 wrote:But why would you spend money on testing? You need to find interventional radiologists to order the testing and the 'repair' for you. Testing will do nothing, if the statistics continue to add up there will be a 90-95% chance you have a problem.
Save your money and find a fixer!


Well that is a lot easier said than done.


1- It is very easy not to go get tested and save the money


2- How many letters have you written to try and find a treatment?

We have had the usual statements from the family GP and the neurologist.
The UBC Study is are only hope at this time in this part of the country.
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Postby jay123 » Tue Jan 19, 2010 9:01 pm

Cheer,
Doesn't doppler catch the azygos vein problem as shown here -
THE MANY SONOGRAPHIC FACES OF THE CHRONIC CEREBROSPINAL VENOUS INSUFFICIENCY: HOW TO PERFORM DOPPLER EXAMINATION
I don't see a credit who wrote that, it might be Simka.
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False Creek MRV.. to 'Cheerleader"

Postby PCakes » Wed Jan 20, 2010 12:01 pm

Dear Cheerleader,

the following was also sent as a 'pm' as i am new to the site and learning where to 'click'..

Hello,

First, thank you so much for sharing your CCSVI journey. You could just have gone on with your lives but you choose to help. Thank you. My first introduction to you and your husband was through the CTV W5 CCSVI report. I will never forget that night.
I know a bit of you.. now me..I am middle aged, live in Canada, dx May 2008.. so far my symptoms are minimal.. numbness, optic neuritis, L'mitte's (sp).. MRI showed 3 or 4 lesions..one described as 'old' and very high in the spine. from initial onset my symptoms seemed so tied to my posture, barometric pressure, stress.. I even asked my neurologist if there was a vascular connection. CCSVI.. Eureka!!
I jumped on the campaign immediately..contacting my doctors, friends, family, polititions and sibling, chief physio at one of our llocal hospitals.. and was my hardest sell... Sharing all info with her staff.. "you tell two friends..and they will tell two friends..." ..
Now if I may impose on your time a bit more.. I am scheduled for a contrast MRV tomorrow, False Creek Surgical Centre.. I have heard that they have yet to be successful with the ultra sound technique .. is the MRV equally telling and of any use independent of the Doppler?
I delayed the scan once already.. but am anxious now to get it done.. and hopefully the results can be used somewhere to help move things forward.
Thank you again, take care, all the best to you, your husband and your family.
Last edited by PCakes on Sun Oct 03, 2010 8:32 pm, edited 2 times in total.
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Postby Billmeik » Wed Jan 20, 2010 1:03 pm

since I'm once more ok with putnams dog's I will look at this from a believer's pov.

Why is false creek 0 for 40 when other's are 40 for 40?

guesses:

1. To see stenosis you have to look at a vein from more that one angle. A flattened tube doesn't look flat from above. This is why when asked what today's docs have that those in the past didn't (that allows today's to see ccsvi) zamboni answers 3d imaging.


2.collatoral veins. To find a blockage it is often necessary to look for the alternate routes taken by bloodflow. This takes training. Some blockages are membranes that grow across a vein.


3. Not trying. I get the feeling they havent read more than the basics and there is some egos involved.
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