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.

Postby Mechanicallyinclined » Thu Jan 21, 2010 3:52 pm

cheerleader wrote: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

Interesting .... Now I know why wasn't getting my direct questions
answered from them. They just said that they have found "some" problem areas
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MRV False Creek

Postby PCakes » Fri Jan 22, 2010 2:41 pm

My MRV is now done.. should see results mid next week...after that..off to the healthcare system I go... I have a copy of the dvd..
The process took almost 90 minutes. A record for me in 'the machine'. I found the False Creek staff very professional, friendly, and genuinely interested in the 'Liberation' procedure. I was told that they have had positive results but treat all patients/clients with confidentiality. The tech that did my scan was great...!! and relfected that they are in fact following the Zamboni/ Buffalo protocol with the admission "we are learning as we go".
They are a Canadian 'diagnostic' centre and are forced to conform to the rules that Health Canada sets. I now know that they are working towards permission to perform the procedure.. and I'm thinking that it might be best not to "bite the hands that are trying to feed"

I will update as things progress.. :) P
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WOW

Postby leetz » Fri Jan 22, 2010 2:58 pm

through...i was in and out in 10 mins...
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
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Postby mangio » Fri Jan 22, 2010 11:11 pm

Pcakes,

A friend of mine has also been to False Creek and had a very positive
experience. They found her blockages and she is set for surgery
in Poland six weeks from now.

As well, there are lots of surgeons
attending Dr. Haakes' event in Hamilton wanting to learn as much
as possible to be ready if all the data presents well. Please
keep us updated and lots of luck.
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Postby Billmeik » Sat Jan 23, 2010 7:54 am

this is interesting. Maybe false creek isnt 0 for 40 as I feared. I called this week to make an appt and they said they weren't taking any more pictures until march. I guess patient confidentiality comes into it, but if they continue to give the impression that they're useless... Dunno. I thought the woman was a little condescending, mentioning a tour that's going to india. (like that's where flakey medicine like this belongs) So she sees me as flakey and I see them as incompetent. Hmmmm
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Postby PCakes » Sun Jan 24, 2010 12:22 am

Mangio,
Thank you for the wishes and the great news of your friend! I hope all goes well for them. Do you know if they had both the MRV and the ultrasound?


Billmeik,
Interesting that they put their scans on hold? Did they say why?
I do know that they offer a travel med service..that may have been the reference to India.
The tech also told me that they will have representation at the Hamilton meetings in Feb. Maybe they are holding off till they learn more?
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Postby PCakes » Sat Jan 30, 2010 4:21 pm

A thought... from this day forward I will present myself as a person with CCSVI. MS will be abandonded as the title and moved into the list of symptoms. One step at a time... they will listen...:)
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Postby mangio » Sat Jan 30, 2010 4:40 pm

PCakes,
She had MRV and the copies of the scans were quite stunning for me to see.
I especially liked the top of the brain frames.

Good luck.
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Questions about treatment in Poland

Postby GM » Sat Jan 30, 2010 4:49 pm

My husband, who has MS, has contacted Dr. Simka and has received a reply that he has been put on the waiting list. We are very excited, but have a lot of questions. Billmeik said that Dr. Simka will be in Vancouver in February. We live in the area and would love to know more about that! Does anyone know where and when?
Also, what about follow-ups for the Liberation Procedure? I know there are many of you who have travelled far (as we would) to have the procedure done. Have you been required to make a second (or third!) trip for follow-ups?
Thank you in advance for your help. Iam a first-time poster, and have found this forum invaluable!
GM
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