CCSVI - Aussie Action!

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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seeva
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CCSVI IN SYDNEY

Post by seeva »

CureOrBust wrote:And further along the reach of this in Australia. I recently spoke with who I was told is the medical director for the Australian MS Society, who is interested in this research. This Dr also knew the vascular sugeon I am speaking to in Sydney.

Problem, my actual neurologist is heavily involved with MS here and around the world, has not "come on board" so to speak, as yet.
HI MEMBER PLEASE LET ME KNOW THE DR YOU HAVE CONTATED IN SYDNEY
REGARDS
SEEVA
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Algis
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Post by Algis »

SEEVA: NO DOCTOR IN SYDNEY - WHAT YOU SPEAKING?
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CureOrBust
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Post by CureOrBust »

http://www.msaustralia.org.au/msra/news-media/news.php
Acknowledging the positive outcomes for the limited number of patients in Italy treated so far, researchers in Western Australia are looking at ways that Australian data can be added to the trials that are underway in Italy and possibly soon in Canada.
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friday_fc
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Post by friday_fc »

CureOrBust wrote:http://www.msaustralia.org.au/msra/news-media/news.php
Acknowledging the positive outcomes for the limited number of patients in Italy treated so far, researchers in Western Australia are looking at ways that Australian data can be added to the trials that are underway in Italy and possibly soon in Canada.
Halle-fricken-lujah to that! :idea: The penny has dropped.

oh, and hi guys & dolls - Sydney chick here

First time posting here
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hwebb
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grass roots action works

Post by hwebb »

I reckon MS Australia has been inundated with enquiries/demands about CCSVI from MSers like us. I've certainly been writing to all the ususal suspects demanding to know what they're doing about CCSVI on Aussie soil.
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CureOrBust
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Post by CureOrBust »

I am certain MS Australia have been hit with a lot of calls now. But As far as I know, this study in WA is not their do-ing.
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hwebb
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i suspect you are right

Post by hwebb »

I suspect you are right. I think they (MS Research Australia) are talking out of their butts actually.

I've been in contact with the researchers in WA (at the university there). They haven't got ethics approval, or submitted an application for funding yet....so it's still early days for CCSVI in Australia.

I think it's promising that it's getting on the radar of Australian research groups though, and they're getting excited about it. They've been very helpful and friendly. Naturally these things take time - and I believe we're talking months rather than years to get CCSVI testing done on Australian soil.
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Post by Brainteaser »

XX
Last edited by Brainteaser on Sat Aug 09, 2014 5:41 pm, edited 1 time in total.
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Post by Johnson »

Phil - even if you did not influence that neuro, you have an influence every time you write, or speak about it. We need to get the evidence of our own venous problems, and as Mark has written - by-pass the neuros. A neurologist has no professional business in the vascular (directly) IMHO.

Patient: I have blocked veins, here is the proof.

Dr.: Go see this vascular specialist, you have a serious pathology there...
My name is not really Johnson. MSed up since 1993
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hwebb
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Buoyed

Post by hwebb »

Phil,
I buoyed by your recent posting. Hope there is progress in Perth.
hwebb
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CureOrBust
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Post by CureOrBust »

Last week I sent a short email to "The Australian Society Of Interventional Radiologists" http://www.irsa.com.au/ And also to "The Royal Australian and New Zealand College of Radiologists" (encompassing interventional radiologists) http://www.ranzcr.edu.au/ using their general contact email addresses, after finding neither had any mention of Zamboni's work. :x

If I am not mistaken, these are the people who will need to "step up to the plate".

My attempt was pretty small, but I was still a little surprised I have yet to receive anything in response. I think it may be helpful if they received a few more emails or phone calls from other concerned locals. :twisted:
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Brainteaser
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Post by Brainteaser »

XX
Last edited by Brainteaser on Sat Aug 09, 2014 5:40 pm, edited 1 time in total.
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hwebb
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Perth ...or Melbourne

Post by hwebb »

I was told that a commercial radiology group in Perth could do scans for me using the Haacke protocol ....but I'd need to track down an appropriate person to analyse the scans (maybe a vascular specialist). Not sure if anyone in Australia is able to analyse CCSVI scans yet...or if a foreign doctor is willing to.

Was advised that St Vincent's hospital in Melbourne also has the brand of equipment (with appropriate specs) recommended by Haacke. Jelinek spends a day a week in Melbourne at St Vincents Hospital...so I will try to contact both him and St Vincent's Hospital next week.

Incidentally, I was reading in the newspaper that Dr Peter Mitchell is the Director of Neurology...and a radiologist as the Royal Melbourne Hospital. He did critical vascular work on the conjoined twins who were recently separated in Melbourne (guiding metal coils from the groin..through the vascular system and ...up to the brain to stop bleeding while the rest of the team separated the twins). I'll forward the CCSVI stuff to him also. If the newspaper has got it right.....it sounds like he has a winning combination of skills.

hwebb
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Johnson
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Post by Johnson »

That is excellent, hwebb. The door is opened a crack in Oz. Keep your foot in it, and push!
My name is not really Johnson. MSed up since 1993
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seeva
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RE VASCULAR SURGEON IN AUSTRALA

Post by seeva »

HI BRAIN/PHIL My name is SEEVA from SYDNEY my M.Sfriends and me are hunting for a vacular surgeone inMELBOURNE AUSTRALIA.Who might b prepared to become involed with CCSVI link to M.S. Please let me know the vascular surgeon the one you have consulted inMELBOURNE.Any help would be gratefully appreciated by my M.S FRIENDS AND ME.
REGARDS
SEEVA :roll:
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