CCSVI - Aussie Action!

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

CCSVI - Aussie Action!

Postby vg440 » Wed Jan 27, 2010 1:51 am

Hi all.

Just received a phone call 20 mins ago from a Melbourne based Imaging clinic which I had been booked to receive an MRV at 11am tomorrow morning.

Would you believe they cancelled the MRV after having booked the appointment a week ago.

The receptionist said she was told to call me to make the cancellation (at 6.45pm! ) because they didn't have the right equipment!!

When I questioned her on the equipment required is merely the MRI machine they confirmed of already having and capable of performing the MRV, she then changed her reason to "it's still an experimental technique and they are not able to do it at the moment"

WTF!

It was they themselves who said they were able to do it and quoted me of the costs.
It was my GP who actually spoke with them and made the booking specifying the reasons for requiring the MRV etc.

The receptionist admitted to not knowing more than what she was told to say.

I'm now even more wary of the powers that be.
There certainly seems to be a strong grip hold influence in allowing only certain investigations to take place and disallowing others in fear that it may reveal the truth and in this case.. support the ccsvi condition.

The gloves are off now!!!!
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Re: The Australasian College of Phlebology (ACP)

Postby CureOrBust » Wed Jan 27, 2010 3:06 am

Squeakycat wrote:A Dr Paul Thibault (NSW) is doing a presentation on Multiple Sclerosis and Cerebral Venous Insufficiency at their annual meeting in two weeks although looking him up, he seems to specialize in treating varicose veins.
for those interested. Tuesday Feb 9th 14:00-14:15 on the programme at http://www.conferencematters.co.nz/program.php Although 15 minutes seems a little brief.
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informing media

Postby Opera » Wed Jan 27, 2010 3:51 am

I am in the process of bringing CCSVI to the attention of the Australian media - I will be writing letters to the mainstream TV channels and to the mainstream news papers that CCSVI should be given publicity. I have spoken to families of MS sufferers but they did not know about CCSVI. If the media can raise public awareness there will be some pressure on the medical community, MS Societies and policy makers to conduct trials in Austraila and even start the Liberation Procedure.

I think it will be good if others also will raise CCSVI with the media because the media may then take notice of this.

I understand CCSVI was not known very much to MS sufferers till W5 in Canada aired a program. This has raised some public awareness and has galvanised support.
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CCSVI - Aussie Action!

Postby vg440 » Wed Jan 27, 2010 4:39 am

Opera,

I agree.
I think the 60 minute reporter Tara Brown in particular would be the ideal person to write to as she has a good friend living at a nursing home due to ms and Tara Brown is clearly emotionally affected at seeing her good friend with her debilitating disease.

Here's the link to her 60 minute story.

http://sixtyminutes.ninemsn.com.au/stor ... ng-goodbye

I feel if we all write to Tara Brown who most likely is unaware of ccsvi and the liberation procedure, and inform her of the current events, she definitely would get the media coverage we desperately seek.
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aussie action

Postby effi » Wed Jan 27, 2010 5:21 am

Hi Guys,

My sister suffers from MS and she only listens to her Neuro
for any hope and since she has PPMS there is not much coming from him

Ihave tried speaking to her about CCSVI but its on deaf ears as she thinks
im a internet junkie trying to find cures for MS. If CCSVI comes out inthe media im sure she will notice maybe front page of Telegraph.
Ill support in any way,
Keep on plugging
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Postby Cece » Wed Jan 27, 2010 7:14 pm

http://www.msra.org.au/news-media/news.php#ccsvijan10

"As an update on CCSVI research, Australian researchers have begun clinical testing procedures and MS Research Australia (MSRA) has been actively involved in the international review of the initial clinical findings (from Dr Zamboni) involving venous obstruction and MS.

The Australian trials, initiated in December, are Perth-based and have tested an initial cohort of 20 patients for venous obstruction. We are following these tests keenly and will report on results when available. These trials are continuing and the researchers involved may seek further funding to verify initial findings."
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby friday_fc » Wed Jan 27, 2010 7:48 pm

Somewhere, cant remember where, a 'petition' was mentioned.

Is there a petition going here in Australia to push investigation, training and treatment for CCSVI? If so, I'm signing and passing on to all I know.

Cheers all. :D
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hopefully aussie docs are extending ccsvi research

Postby hwebb » Wed Jan 27, 2010 11:56 pm

glad to hear the australian docs are gaining some expertise in the field of ccsvi, but hopefully they're not just duplicating work already done by the wonderful Italians (would prefer aussies to extend the body of knowledge on ccsvi, not duplicate it).

they do day "italians do it better". From their recent actions, I can see the italians definitely don't mess around!

http://www.ctv.ca/servlet/ArticleNews/s ... hub=Health
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Postby avantitech » Thu Jan 28, 2010 12:46 am

Folks,
please read the following post Re Melbourne Doppler, lest I repeat myself

http://www.thisisms.com/ftopicp-88893.html#88893
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Postby CureOrBust » Thu Jan 28, 2010 1:38 am

I had an MRV scheduled at the Edgcliffe centre for tomorrow, it got delayed till next week. They are awaiting (for some time now) some clarification on procedure from the US.
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Postby CureOrBust » Thu Jan 28, 2010 4:39 am

Came across these guys tonight, and thought they may be a possibility for future surgey. http://www.keyholesurgerycentre.com.au/aboutus.html
Has anyone spoken to this centre or Dr? I just sent them an email with links to CCSVI, I will of course let you know if I get any response.

Later edit..

Well, maybe not those guys, a little too focussed on lap bands, but this guys looks good. Anyone speak to them? I just sent them an email.
http://www.specialistvascularclinic.com.au/endovascular-surgery.html
http://www.specialistvascularclinic.com.au/walid-mohabbat.html
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Postby dado84 » Thu Jan 28, 2010 10:24 pm

Hello

I have rang Castlereagh imaging in edgecliff and they say that MRV are no longer available there. Would that be mistake?
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Postby CureOrBust » Fri Jan 29, 2010 12:54 am

An MRV is a pretty standard test in itself. Its not newly created for CCSVI, therefore many MR clinics should be able to perform it.

If I had to do it all again (from DEC 2008), I would of simply got a GP referal for an MRV from my diaphragm, to the top of my head WITHOUT any specific referral to CCSVI. I think the clinics do need some instruction as to what they are looking for, but I am sure the dr could simply write something general about suspected vascular irregularities.

Its possile that it may not specifically show any CCSVI, but there is a chance it just might. Its fairly non-invasive (contrast agent required), and when the radiologists sort themselves out, you can always get it done again.
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Aussie Petition

Postby Opera » Tue Feb 02, 2010 3:37 am

Hi All,

Just to let you know there is a petition to Australia's Minister of Health about CCSVI research at the following link:
http://www.gopetition.com/petitions/sup ... ralia.html
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Re: Aussie Petition

Postby friday_fc » Tue Feb 02, 2010 3:58 am

Opera wrote:Hi All,

Just to let you know there is a petition to Australia's Minister of Health about CCSVI research at the following link:
http://www.gopetition.com/petitions/sup ... ralia.html


I'm on it!! Just got done signing one on Go petition but realised it was the Canadian one - still was worth it but god knows we need attention focussed for us here in Oz more. Im off to sign and send this link to all and sundry all over again lol.

Many thanks for that O, Hope we get more sigs than Canada - but I doubt it as it has all of the American MS'ers signing that one too, not to mention O/s signatures. Hope it is also noted on Facebook?
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