CCSVI in Australia ??????????

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

CCSVI in Australia ??????????

Postby Dahlia » Tue Nov 24, 2009 2:11 pm

Hi everyone,
I'm sitting here in Australia - thinking - well, what's going on ?
I noticed from one of the other threads that one Aussie has been extremely brave and ventured to Poland to have this done.
Has anyone here in Oz talked to their neuro about this ?

Fingers crossed.
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Re: CCSVI in Australia ??????????

Postby ErikaSlovakia » Tue Nov 24, 2009 2:18 pm

Dahlia wrote:Hi everyone,
I'm sitting here in Australia - thinking - well, what's going on ?
I noticed from one of the other threads that one Aussie has been extremely brave and ventured to Poland to have this done.
Has anyone here in Oz talked to their neuro about this ?

Fingers crossed.

Do not forget to talk to some angiologist as well. Veins are Angiology not Neurology.
Well, at least in Slovakia neurologist do not know much about veins.
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby CureOrBust » Wed Nov 25, 2009 2:01 am

I have mentioned it to two of my neuros, and have been pestering them about it for the past 12 months (both of whom are well connected in MS, worldwide).

I have had another neuro who specialised in stroke actually perform the Doppler tests as described in Zamboni's paper of 2008. They found a reflux in the IJV, but not a second item as described; and he quickly returned to his main field (MS was not his speciality).

One of my neuro's has recently agreed to perform the SWI & MRV as per Dr Haake's web site.

I have had an MRV performed, but it was only of my head and upper neck. It did not show any specific stenosis, but did indicate an asymmetry in my jugulars. I am guessing (almost hoping) that my issue will be FOUND somewhere lower down, below my neck.

I have also made the Australian MS Society aware of Zamboni's work, and am in contact with one of their head research neuros. Today I received an email from him, with an attached memo addressed to MS Australia, informing them of "CCSVI". He is very interested in this research, but obviously I am guessing he has to remain professional and expect full scientific methodo0logy to be followed. I searched their web site and did not find the document, so I am guessing its an internal document, even though it has a QA at the end obviously aimed at patients. Or maybe it will be published soon. But they are aware of it.

As soon as Zamboni's treatment paper is available, I will be chasing up my second neuro regarding the SWI & MRV.

I have also spoke to a local vascular surgeon who is a friend of Zamboni, was on the committee for the conference in Monaco, and has also spoken directly with the neuro that will be organising the SWI & MRV. From my understanding he is also cautiously following this.
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Postby Dahlia » Thu Nov 26, 2009 2:17 pm

I had my GP speak to the neuro about ccsvi and of course he's not interested in chasing it up. He said that this is an old theory retried - and, that last time nothing came of it.
I'm keeping my fingers crossed that he'll eventually be convinced - and hope that more research on ccsvi follows soon.
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Postby muse » Thu Nov 26, 2009 2:40 pm

Hi@,
in Australia is something on the way :D , as soon I get the facts I will inform you.
Best
muse
http://www.csvi-ms.net/en


My stenosis of the Vena jugularis:
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Postby CureOrBust » Fri Nov 27, 2009 7:38 pm

I notice it has a link on http://www.msqld.org/ (MS Queensland)
Multiple Sclerosis Society of Canada to invite research operating grant proposals related to CCSVI and MS (News-Medical-Net)
The Multiple Sclerosis Society of Canada announced it will request research operating grants related to chronic cerebrospinal venous insufficiency (CCSVI) and MS.
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