CCSVI - Aussie Action!

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

Results

Postby jianfei » Tue Feb 09, 2010 11:27 pm

Hi All,

Here are my results from yesterday's test at MR Clinic (Apologies for lack of proper formatting)


FINDINGS:

RIGHT SUPINE ERECT
IJV AREA (mm2) 60 (N69-143) 8 (N 9-25)
IJV DOPPLER VOL 726 (N430-970) 70-300 (N 0-170)
VERTEBRAL AREA 9.7 (N7.8-13.4) 9.7 (N8.3-15.5)
VETEBRAL DOPP VOL 76 (N20-60) 341 (N90-330)

LEFT SUPINE ERECT
IJV AREA (mm2) 57 (N69-143) 10 (N 9-25)
IJV DOPPLER VOL 353 (N430-970) 268-846 (N 0-170)
VERTEBRAL AREA 6.2 (N7.8-13.4) 6.4 (N8.3-15.5)
VETEBRAL DOPP VOL 5.2 (N20-60) 48 (N90-330)

Stenosis: Right Internal jugular vein at 2.2mm with the left of normal calibre measuring 5.3mm

Aneurysm: No
Reflux (>0.88sec):No

DCSA IJV (N>0): Supine - Erect CSA IJV Right: Normal Left: Normal

Conclusion: Narrowing of the right internal jugular vein of 2.2mm in maximal internal diameter extending over 2.3cm occurs just superior to the level of the thyroid gland with the velocities proximal to the stenosis measured at 23cm/s and the mid level of stenosis measuring 68cm/s

Regards

Daniel
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Postby elaine » Wed Feb 10, 2010 12:57 am

hey what a good idea the people from the uk have got a ccsvi face book going, how about us aussies get one started?
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CCSVI AUSTRALIA

Postby jianfei » Wed Feb 10, 2010 1:02 am

Hi,

I have joined the CCSVI AUSTRALIA, Its present with over 600+ members/fans

I just did a search for CCSVI AUSTRALIA in Facebook.

cheers

Jianfei
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Postby elaine » Wed Feb 10, 2010 1:13 am

thanks Jianfei, I should have looked properly first.You would think i would have learnt my lesson by now hey Aldolfo.
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Postby avantitech » Thu Feb 11, 2010 4:51 am

Good news Folks,

I've had a consult with a Melbourne vascular surgeon who appears to be of the opinion that the markedly narrowed IJV and VV veins need to be addressed asap i.e. visualised via venography and possibly treated by balloon angioplasty......scheduled on March 4th.

The inverted valve is not being addressed as it is not an absolute necessity for daily living (and I am not a roulette pilot, trapeze artist or circus performer). In any case a working valve replacement is not available as yet.

It remains to be seen if or to what extent blood flow can be improved, but I remain hopeful that something positive will be achieved, normality restored at least.

I reiterate that we must emphasise this is primarily a vascular issue not an MS issue. Although there appears to be a strong correlation or association, causation is yet to be proved although substantial progress is being made as in the BNAC preliminary results indicate.

It may be that the narrowed portions of the vessels are too long to be successfully widened and if so then it will be difficult to have normal blood flow in my case. It may also be that the location of the narrowing precludes any action. Furthermore if the short lengths of the stenoses are indeed widened there is a 50% chance of restenosing within months.

I am happy to provide contact details and the VS is happy to be see more of us via GP referral but it may be wise to hold off having a procedure until I can get some feedback to you folks. Procedure is to be performed via Medicare at a public hospital.

Cheers,
..Adolfo
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Contact details?

Postby nico » Thu Feb 11, 2010 4:41 pm

avantitech wrote:Good news Folks,

I've had a consult with a Melbourne vascular surgeon who appears to be of the opinion that the markedly narrowed IJV and VV veins need to be addressed asap i.e. visualised via venography and possibly treated by balloon angioplasty......scheduled on March 4th.

The inverted valve is not being addressed as it is not an absolute necessity for daily living (and I am not a roulette pilot, trapeze artist or circus performer). In any case a working valve replacement is not available as yet.

It remains to be seen if or to what extent blood flow can be improved, but I remain hopeful that something positive will be achieved, normality restored at least.

I reiterate that we must emphasise this is primarily a vascular issue not an MS issue. Although there appears to be a strong correlation or association, causation is yet to be proved although substantial progress is being made as in the BNAC preliminary results indicate.

It may be that the narrowed portions of the vessels are too long to be successfully widened and if so then it will be difficult to have normal blood flow in my case. It may also be that the location of the narrowing precludes any action. Furthermore if the short lengths of the stenoses are indeed widened there is a 50% chance of restenosing within months.

I am happy to provide contact details and the VS is happy to be see more of us via GP referral but it may be wise to hold off having a procedure until I can get some feedback to you folks. Procedure is to be performed via Medicare at a public hospital.

Cheers,
..Adolfo


Adolfo,

Terrific news! Well done! l'm still very much in investigation mode, but would you be so kind pls as to tell us the name of the VS u recently saw in Melb please? l sincerely wish u all the very best for March 4. cheers and thank you,
Nico (L's sis)
:wink:
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Postby elaine » Thu Feb 11, 2010 5:14 pm

best of luck Aldofo i have my appointment with a vs is in march but he doesn't sound too interested.Hope every thing goes well for you will be waiting to hear more.
elaine
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Postby avantitech » Thu Feb 11, 2010 6:48 pm

Daniel, Elaine and Helen,
..thank you for your kind words.
...pls check your private messages inbox.

Folks,
I'm hoping to post a progress report after the investigation and procedure on March 4th is completed.

All the best.
...Adolfo
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Good Luck

Postby jianfei » Thu Feb 11, 2010 7:42 pm

Hi Adolfo!

Congrats mate!
I hope it's all going to work out.

Fingers crossed!

Daniel
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why are we ignoring the azygos vein?

Postby nico » Fri Feb 12, 2010 9:51 pm

lt amazes me that in all the furfore Prof. Zamboni's 'ccsvi' discovery has created, one simple fact is being consistentlty overlooked and hence, is threatening to derail the first positive news MS patients have ever received. Prof. Zamboni theorises that a narrowingv of EITHER the jugular vein in the neck AND/OR the azygos vein in the spine can lead to reflux, etc. Yet reporters etc have jumped on only the jug vein aspect. Wouln't this skew results? For all those being tested, PLEASE bear this in mind. cheers, Nico
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Re: why are we ignoring the azygos vein?

Postby friday_fc » Fri Feb 12, 2010 10:01 pm

nico wrote:lt amazes me that in all the furfore Prof. Zamboni's 'ccsvi' discovery has created, one simple fact is being consistentlty overlooked and hence, is threatening to derail the first positive news MS patients have ever received. Prof. Zamboni theorises that a narrowingv of EITHER the jugular vein in the neck AND/OR the azygos vein in the spine can lead to reflux, etc. Yet reporters etc have jumped on only the jug vein aspect. Wouln't this skew results? For all those being tested, PLEASE bear this in mind. cheers, Nico


For me personally, Nico, I want more testing and statistics/results on the azygos/azygous vein especially seeing ALL my lesions are up and down the T zone of the spine. No lesions in my brain. I'm desperate for more Azy study figures, so, GOOD POINT.
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Postby avantitech » Sat Feb 13, 2010 1:33 am

Well done to Kerri - she is Doppler Scan No 14 in Melbourne as per her video link on CCSVI Australia website: http://www.facebook.com/pages/CCSVI-AUS ... 799?ref=nf
to her YouTube video: http://www.youtube.com/watch?v=8i_hI5GQ12o
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Postby Salvatore24 » Sat Feb 13, 2010 4:33 am

Looks like I'll be organising this scan to happen as soon as possible. Thanks to everyone that got the ball rolling.
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Postby Opera » Sat Feb 13, 2010 5:39 pm

I saw this response in the CCSVI Australia Facebook:

I find MS Research’s and the Australian MS Societies’ “wait and see” approach on CCSVI unacceptable because MS sufferers are essentially playing with a ticking time bomb and early intervention is critical.

I acknowledge that CCSVI is yet to be proven and therefore has to be rigorously tested – That is why clinical trials without delay are essential. Whilst in other countries such as the USA, Canada, Jordan, Poland, India and now even in UK, trials, if not being planned, are now underway, in Australia which has an estimated 20,000 or more MS patients there is none. There is only a limited study- not a clinical trial- involving 20 patients in Western Australia and this does not allow for the wider community of MS patients to participate. If MS suffers have to participate in trials they are compelled to go overseas which, if not cost prohibitive, is impracticable.

The most up to date information on the internet from Dr Simka in Poland who performs CCSVI and Dr Dake in Stanford who performed the procedure previously indicates the significant benefit of the treatment on MS sufferers. This is more the reason clinical trials should be conducted in Australia without delay.

Ms Research and MS Societies are dragging their feet and they have lost my confidence in them. My lone comment here will perhaps have no impact on them and they may shrug it off without further consideration. Therefore it is important that all MS sufferers in Australia are united in their effort to show their dissatisfaction to the lackadaisical approach of MS Research and MS Societies so that pressure will be brought to bear on them to initiate the conduct of clinical trials.

I suggest that all MS patients in Australia write to MS Research Australia and ask them to be more pro ative and fast forward research into CCSVI.
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Postby avantitech » Sat Feb 13, 2010 6:29 pm

Salvatore24 wrote:Looks like I'll be organising this scan to happen as soon as possible. Thanks to everyone that got the ball rolling.

rolling and beginning to pick up speed..pls chk PMs
ciao,
...adolfo
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