CCSVI - Aussie Action!

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

MS Research Australia

Postby Opera » Sat Feb 13, 2010 11:19 pm

For those who wish to email Ms Research Australia urging them to initiate clinical trials in Australia- see my post above- the email address is :


E-mail: info@msra.org.au
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Re: MS Research Australia

Postby friday_fc » Sat Feb 13, 2010 11:46 pm

Opera wrote:For those who wish to email Ms Research Australia urging them to initiate clinical trials in Australia- see my post above- the email address is :


E-mail: info@msra.org.au


So many people with MS that I know personally cant be arsed to raise an eyebrow about the information i have sent them on CCSVI and that made me think, cant we just get the aussie petition with over 400 signatures sent to msra? Would you believe the amount of lazy or disinterested MS sufferers I have spoken to and asked for a simple signature on that petition 3 weeks ago and they still havent signed it? Very frustrating.

ETA: I am NOT one of thos lazy or disinterested people, i have taken alot of action and i live and breathe CCSVI, (lol, just thought i'd clear that up )
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ccsvi coverage : MS Queensland

Postby hwebb » Sun Feb 14, 2010 3:19 am

MS Queensland seems to be the only branch of MS Australia to give ccsvi optimistic coverage:


http://www.msqld.org/home/155-latest-re ... svi-and-ms

it's encouraging to read their statement:


It is important for researchers to think outside the box and we believe Dr. Zamboni has done this


Well done MS QLD!
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Monday 15th

Postby jianfei » Mon Feb 15, 2010 4:40 am

Hi All,

Just signing in to see if there has been ANY further movement in testing, here in Melbourne. Also I watched a video on Youtube of doppler scan patient no 14. If your out there it was great to see your video. :-)

I think if we all stay roughly on Par with each other in regards to testing my guess is it will have a greater benefit for all of us.

Best Wishes

jianfei
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Postby Opera » Mon Feb 15, 2010 1:55 pm

I wrote a letter to MS Australia and the person did not even ackowledge the letter. I did get a call from MSResearch. The person expressed "healthy skeptism" at CCSVI.

I am not upset as when the two Aussies, Professor Barry Marshall and Dr Robin Warren of Perth first put forward the discovery of the bacterium Helicobacter pylori and its role in gastritis and peptic ulcer disease, they were ignored and laughed at by the medical profession!!! Their early papers were even refused publication by both the American Medical Society and the Australian Society of Gastroenterology. Eventually in 2005 they were jointly awarded the Nobel Prize in physiology / medicine.

So let us wait patiently but keep on pushing the politicians and the media.
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Postby nico » Mon Feb 15, 2010 3:25 pm

Opera wrote:I wrote a letter to MS Australia and the person did not even ackowledge the letter. I did get a call from MSResearch. The person expressed "healthy skeptism" at CCSVI.

I am not upset as when the two Aussies, Professor Barry Marshall and Dr Robin Warren of Perth first put forward the discovery of the bacterium Helicobacter pylori and its role in gastritis and peptic ulcer disease, they were ignored and laughed at by the medical profession!!! Their early papers were even refused publication by both the American Medical Society and the Australian Society of Gastroenterology. Eventually in 2005 they were jointly awarded the Nobel Prize in physiology / medicine.

So let us wait patiently but keep on pushing the politicians and the media.


waiting? At the risk of sounding like a complete wanker, after 15 years of MS, 'time' is the one thing l don't have a lot of! l've emailed (twice)Tara Brown, the 60 Minutes reeporter who did a story on a good friiend who was in a BAD way with MS. What's to say focussing attention on interested and credible media won't get resul.ts? This story is nows available for viewing on the CCSVI Australia page.
PLEASE EMAIL TARA BROWN C/O 60 MINUTES MAIL BAG
Let's move!
Regards, Nico.
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cranial doppler melbourne ...nearly

Postby hwebb » Mon Feb 15, 2010 7:41 pm

Hi all,

I mentioned a little while ago that I was schedued for a cranial doppler today. I attended my appointment today, but all did not go as planned. The sonographer had a cranial probe...but it didn't seem to be sensitive enough. It could only probe the thinnest parts of my head - such as my temple - so he couldn't investigate suspected stenosis in other areas of my cranium (as hinted at in the MRV analysis). Also, I had forwarded the sonographer various information about the correct doppler technique via the vascular surgeon I've been seeing. The info didn't make it to the sonographer - who was very interested in this work, and helpful.

Anyway, I will stay in touch with the sonographer, and now have his direct contact details. He may be able to access a more sensitive probe in the future. I'll post if i ever have a successful cranial doppler.

I'm not going to see this particular vascular surgeon again - basically feel he's a timewaster, lacks skills in this area, and lacks motivation to develop skills in this area.

hwebb
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Postby Opera » Tue Feb 16, 2010 2:53 am

Please sign the petition to the MS Society Australia, Prime Minister and the Federal Minister of Health for CCSVI at

http://www.gopetition.com.au/petitions/ ... ralia.html
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Postby seeva » Tue Feb 16, 2010 4:48 am

HI Members finally a goodnews from DR.PUAL THIBAOLT newcastle
he wants 2-3 M.S patients from me for his trail of CCSVI. He found a good vascular sonographer fis his trails. if works next step he want open a spicial cclinic soon in SYDNEY. For the trail one of my M.S friends and mystlf was nominated and the ultrasound doppler examination possibly 27th FEB or 3RD of march at his clinic in newcastle.

Also i have recived a mail from my neuro. today that PROFESSOR ZIVADINOV is coming to SYDNEY IN MARCH.And all the neurologists are will be at the meeting with the DR in SYDNEY. My NERO. also will attenting the meeting
regards
seeva

THIS IS THE LETTER FROM DR.PAUL

dear Kandiah



I have arranged for a very experienced vascular sonographer in Newcastle
(I have worked with him before with various research projects) to set up
the initial ultrasound diagnosis protocol.
Initially I will need 2 - 3 patients with definite MS to help define the
protocol. This will be done in Newcastle on a Wednesday afternoon (not
next week) in the near future.
Would you be able to help with this?
If you can't attend yourself, I'm sure I will be able to find an
alternatives, so don't feel that you are letting me down if you can't
attend.

I have also obtained the agreement of an experienced interventional
radiologist at St Vincent's Hospital to help with the next stage of
venography for patients with positive ultrasound findings and
subsequently for possible endovascular interventional techniques.

So, first of all, let me know if you can come to Newcastle for the
intial ultrasound protocol determination.

Regards
Paul

:roll: :roll: :roll: :roll:
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Newcastle trial

Postby Opera » Tue Feb 16, 2010 1:31 pm

seeva wrote:HI Members finally a goodnews from DR.PUAL THIBAOLT newcastle
he wants 2-3 M.S patients from me for his trail of CCSVI. He found a good vascular sonographer fis his trails. if works next step he want open a spicial cclinic soon in SYDNEY. For the trail one of my M.S friends and mystlf was nominated and the ultrasound doppler examination possibly 27th FEB or 3RD of march at his clinic in newcastle.

Also i have recived a mail from my neuro. today that PROFESSOR ZIVADINOV is coming to SYDNEY IN MARCH.And all the neurologists are will be at the meeting with the DR in SYDNEY. My NERO. also will attenting the meeting
regards
seeva

THIS IS THE LETTER FROM DR.PAUL

dear Kandiah



I have arranged for a very experienced vascular sonographer in Newcastle
(I have worked with him before with various research projects) to set up
the initial ultrasound diagnosis protocol.
Initially I will need 2 - 3 patients with definite MS to help define the
protocol. This will be done in Newcastle on a Wednesday afternoon (not
next week) in the near future.
Would you be able to help with this?
If you can't attend yourself, I'm sure I will be able to find an
alternatives, so don't feel that you are letting me down if you can't
attend.

I have also obtained the agreement of an experienced interventional
radiologist at St Vincent's Hospital to help with the next stage of
venography for patients with positive ultrasound findings and
subsequently for possible endovascular interventional techniques.

So, first of all, let me know if you can come to Newcastle for the
intial ultrasound protocol determination.

Regards
Paul

:roll: :roll: :roll: :roll:




Thank you very much for the information. Wish you all the best and hope everything goes well. Please keep us posted.
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yee-ha ! Aussie Action

Postby hwebb » Tue Feb 16, 2010 2:10 pm

Seeva - this is wonderful progress. Thanks for posting! I look forward to reading more of your posts on this topic.

hwebb
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Postby elaine » Tue Feb 16, 2010 2:58 pm

seeva
that's great news thank you so much for all your hard work, fingers crosssed it will soon be happening in Australia.
elaine
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CCSVI in Newcastle

Postby Opera » Tue Feb 16, 2010 4:54 pm

Hi Seeva,

Thanks for the information. Please keep us posted on the progress. Wish you all the best.
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Re: cranial doppler melbourne ...nearly

Postby nico » Tue Feb 16, 2010 9:19 pm

[quote="hwebb"]Hi all,

I mentioned a little while ago that I was schedued for a cranial doppler today. I attended my appointment today, but all did not go as planned. The sonographer had a cranial probe...but it didn't seem to be sensitive enough. It could only probe the thinnest parts of my head - such as my temple - so he couldn't investigate suspected stenosis in other areas of my cranium (as hinted at in the MRV analysis). Also, I had forwarded the sonographer various information about the correct doppler technique via the vascular surgeon I've been seeing. The info didn't make it to the sonographer - who was very interested in this work, and helpful.

Anyway, I will stay in touch with the sonographer, and now have his direct contact details. He may be able to access a more sensitive probe in the future. I'll post if i ever have a successful cranial doppler.

There in currently only a single sonographer with the appropriate training and equipment to do a Doppler ultrasound of yr neck. Details have b een provided in previous posts. Also provided on the CCSVI Aust web page. Best of luck. cheers, nico
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Postby combat » Wed Feb 17, 2010 2:11 am

Sorry Nico to hear your Doppler did not work out today. keep your fingers crossed. Hopefully things will work out

The situation would have been so different if there are clinical trials allowing MS sufferers to get themselves tested and treated if required . MS Australia and MSRA should be planning and running trials . They are not doing that.They are betraying the MS patient community.
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