CCSVI - Aussie Action!

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

Postby Downunder » Tue Nov 30, 2010 6:21 pm

Here's the youtube of the 'flash mob' in Melbourne 13th Nov 2010

http://www.youtube.com/watch?v=BaV2SjPebw4
User avatar
Downunder
Family Member
 
Posts: 89
Joined: Mon Dec 21, 2009 4:00 pm
Location: Melbourne, Australia

Advertisement

Postby Brainteaser » Thu Dec 30, 2010 6:05 pm

There seems to be some momentum now in the US and elsewhere in terms of fine-tuning CCSVI treatment procedures.

Some strategies noted include -

- using bigger balloons
- breaking up valves
- longer ballooning times

I may have missed it, but has anyone here seen these changes or discussed them with their IRs at various treatment centres in NSW, Vic and WA?
User avatar
Brainteaser
Family Elder
 
Posts: 428
Joined: Fri Jan 14, 2005 4:00 pm
Location: Melbourne, Australia

hey Phil

Postby hwebb » Fri Dec 31, 2010 4:18 am

Hey Phil,

I've been forwarding anything i read on these refined techniques to the Melbourne team. I'm not sure if they've been reading what I forward, or talking to their colleagues. However, certainly they have been absorbing info from somewhere and it shows in their improved technique.

Hope you're doing well - you know I've been sending you PMs trying to contact you!

Helen
User avatar
hwebb
Family Elder
 
Posts: 356
Joined: Thu Nov 26, 2009 4:00 pm
Location: Melbourne, Australia

Postby CureOrBust » Thu Feb 03, 2011 3:53 am

I had my second treatment last week. The first in Sydney, this last one in Melbourne. Due to all the restrictions, I had it performed outside of Medicare, and thus was also not restricted by any particular Hospitals ethics committee. As I was not insured, I also paid for it out of my own pocket.
User avatar
CureOrBust
Family Elder
 
Posts: 2871
Joined: Wed Jul 27, 2005 3:00 pm
Location: Sydney, Australia

Postby Trickenzie » Thu Feb 03, 2011 8:23 pm

Hi guys,

I am in Perth and have followed the CCSVI phenomenon since it broke into the news over a year ago. I made the decision then to wait for a year and see how it panned out. I have now decided that I want to go ahead with being tested for this and despite visiting the SJoG Drs who are foremost on this procedure in Perth (and being offered a place in their trial team, which I accepted) I have not moved forward.

I do not wish to wait any longer. A few months ago I raised the head of my bed which immediately eased nearly all fatigue and has had other effects that are now showing (my hair is thicker, for example) which makes me believe I am a good candidate for the CCSVI Liberation procedure.

As has been said, there is little to no ability to have this procedure done in Perth, therefore I am willing to travel to Sydney or Melbourne as necessary.

Can anyone advise me where to start with this? I have a great GP who will be willing to give me any referrals and I have informed my neuro that I will be doing this - while she is not particularly happy with my choice she will be interested to see the results. I have told her that I don't see it as a cure for MS merely a treatment for some of the symptoms and that I will not stop taking my Copaxone or other medications without her knowledge (all of which is true).

So, I need some phone numbers or names of places that are doing this procedure. Thank you in advance for any help.

Trickie.
User avatar
Trickenzie
Newbie
 
Posts: 5
Joined: Fri Feb 05, 2010 4:00 pm

Trickenzie

Postby hwebb » Fri Feb 04, 2011 9:13 pm

Cure - glad to here you got your treatment in Melb. How are you feeling?

Trickenzie...certainly treatment is available in Perth. Doctor Sanjay Nadkarni has been doing it (08 9381 6292). You should ring for a consultation.

Come join us on FaceBook for lots of Aussie updates!

http://www.facebook.com/CCSVIAUSTRALIA?v=photos
User avatar
hwebb
Family Elder
 
Posts: 356
Joined: Thu Nov 26, 2009 4:00 pm
Location: Melbourne, Australia

Zamboni coming to Melbourne soon

Postby hwebb » Fri Feb 04, 2011 9:15 pm

Zamboni coming to Melbourne soon for a conference - here's your chance to meet him!

http://www.voyager2.com.au/images/stories/CSSVI/ms_patient_info_evening1.pdf
User avatar
hwebb
Family Elder
 
Posts: 356
Joined: Thu Nov 26, 2009 4:00 pm
Location: Melbourne, Australia

CCSVI

Postby Opera » Sat Feb 05, 2011 4:59 pm

Trickenzie,

Please check your PM.

Best of luck.
User avatar
Opera
Family Member
 
Posts: 83
Joined: Thu Jan 14, 2010 4:00 pm

latest news on The Alfred

Postby hwebb » Thu Feb 10, 2011 3:00 am

latest news - The Alfred CCSVI trial has been approved
User avatar
hwebb
Family Elder
 
Posts: 356
Joined: Thu Nov 26, 2009 4:00 pm
Location: Melbourne, Australia

Correction

Postby avantitech » Tue Feb 22, 2011 7:05 pm

Hi Folks, actually Prof T was made aware of this claim and wishes to make the following correction ad verbatim.

> There is apparently a blog stating that my trial has been approved.
> I wonder if you would be able to squash this rumour as a trial has very
> definitely not been approved.
> In fact the Ethics Committee have yet to meet since before Christmas and
> this looks like we have pre-empted their decision.

Cheers
..Adolfo
User avatar
avantitech
Family Member
 
Posts: 79
Joined: Mon Oct 26, 2009 4:00 pm
Location: Melbourne - Australia

Postby CureOrBust » Wed Feb 23, 2011 5:30 am

Has anyone who has not seen improvements, been for a follow-up ultrasound? results?

I have a follow-up ultrasound early next week, will let you know how it goes.
User avatar
CureOrBust
Family Elder
 
Posts: 2871
Joined: Wed Jul 27, 2005 3:00 pm
Location: Sydney, Australia

Postby CureOrBust » Thu Mar 03, 2011 4:23 am

I had the follow up ultra sound.

My right side showed considerable improvement, but my left although improved, is not as good as my right. This could be within normal range.

The reflux previously found was also gone.

Also, the stenosis found in my MRV where my LIJV crosses my cartoid artery was also no longer visible. The dr's that ballooned it said that they expected that it will return.

Still no real improvements on my MS that could be mentioned however. :(

Has anyone heard of someone in Australia using IVUS? When I spoke to the doc that read me my results, he had never even heard of IVUS before :?
User avatar
CureOrBust
Family Elder
 
Posts: 2871
Joined: Wed Jul 27, 2005 3:00 pm
Location: Sydney, Australia

IVUS in Oz

Postby hwebb » Fri Mar 04, 2011 2:43 pm

the IVUS equipment is available at The Alfred (vasular doctors use it) but the IR hasn't been using it yet. There was still some work to be done regarding compatibilty of the IVUS equipment and the other IR equipment.
User avatar
hwebb
Family Elder
 
Posts: 356
Joined: Thu Nov 26, 2009 4:00 pm
Location: Melbourne, Australia

Postby Downunder » Fri Mar 18, 2011 6:21 pm

Don't forget to register for the CCSVI and MS - Patient Information night April 1st, keynote speaker Prof Zamboni and also our very own Kerri (Kezzcazz). Cost of $25 inc light supper.
This is an awesome opportunity to meet Prof Z and ask him your questions.
To register for the Session on the 1st April featuring Paolo Zamboni:

http://www.cdesign.com.au/acp2011/patient_evening.html


AND


The patient advocacy group CCSVI Australia, supported by MS Australia, will be holding a public forum on the morning of 2nd April to discuss chronic cerebrospinal venous insufficiency and MS. You can attend the live event in Melbourne, or simulcasts in Sydney and Canberra. For more information and registrations

http://www.mssociety.org.au/latestnews.asp#CCSVI-FORUM



We NEED everyone we can get to these events, even if it's just to show our commitment.
These events are open to anyone, so get reposting to your friends, family, carers, GP, and dare I say neurologists?!!
User avatar
Downunder
Family Member
 
Posts: 89
Joined: Mon Dec 21, 2009 4:00 pm
Location: Melbourne, Australia

Postby Downunder » Fri Mar 18, 2011 6:32 pm

ALSO

http://www.abc.net.au/rn/healthreport/default.htm

This link is to Norman Swan's Health report program. A full story on CCSVI will be aired Monday, 21st March at 8.30am Eastern time on ABC Radio National.

This report will feature an interview with Dr Haskal, I.R. from Baltimore and our very own Kerri Cassidy.

This will be aired Australia-wide check www.abc.net.au/rn/frequency to find your local frequency.
User avatar
Downunder
Family Member
 
Posts: 89
Joined: Mon Dec 21, 2009 4:00 pm
Location: Melbourne, Australia

PreviousNext

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users