CCSVI - Aussie Action!

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

Postby CureOrBust » Wed Feb 24, 2010 4:18 am

OK, had an initial glance through a lot of the images, and all I could see was the below possible issue. But we are not talking anything too outstanding compared to others. NB: This is one slice from a series of them rotating this view, and is heavily zoomed in. The machine at Blacktown has a big field of view.
Image
Does anyone know if an MRV shows the outside diameter of the vein or only the blood flowing within the vein?
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MRV AT BLACKTOWN HOPITL

Postby seeva » Wed Feb 24, 2010 4:58 am

HI Members I had my last appointment yesterday with my neurologist DR. STEVE VUCIC at the westmead M.S CLINIC IN WESTMEAD HOPITAL. He is now fully
supporing the CCSVI LINK TO M.S.Now he ready to send me any examinations i want. he has completely changed.He is send me to blacktown hospital for MRV exanination. if any stenosis are found in my neck or head veins then he can arrange a V.S in westmead hospital to do the liberation procedures.He all redy arrange a v.s who can willing to do the procedure.
SO IS VERY GOOD NEWS.If any one need to see DR.STEVE please contact
THERESE BURKE on 0298457997. phone early morning to her.I think one of our member CURE must have met DR.STEVE and gave the BLACKTOWN HOSPITAL MRV DETAILS . Thanks for his hard work.

Today MY FRIEND AND I had our trail doppler examination with DR. PAUL THIBAULT at his medical centre in newcastle. One of his technician and DR.PAUL were done the examinations.He found both sidesIJVS have reduced blood flow. But he like to check with his sonographer before his final report to me in two days time.For my lady friend he found the same result but her aztgos veins have some venous stenosis problems. she suffering from SPMS for last 24years. Her final result will be send her in a two days time.DR. PAUL is very helpful man.He already arrange a interventional radiologisist in ST' Vincent hospital to do the procedure. If all goes as planed then very soon he will setup a spical clinic in SYDNEY for this purpose.
regards
seeva :roll:
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Postby Rokkit » Wed Feb 24, 2010 7:11 am

Wow, Seeva, this is fantastic! Congratulations!
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Postby friday_fc » Wed Feb 24, 2010 3:16 pm

WOW and double wow. thx for everything - the info and trail-blazing for us here in Sydney. I'm on it!!
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Postby Downunder » Wed Feb 24, 2010 4:27 pm

friday_fc wrote:
I have already asked my doctor for a referral and because she has never heard of CCSVI or seen that it is a recognised condition in her medical circles, let alone it's association to MS, she told me she couldnt give a referral as there are no 'indications' or immediate reason for investigation. she was VERY weird about the whole thing.


Here in Melbourne 'Marzy' took the doppler protocol to an independent imaging clinic.
We are paying for this test ourselves - $300 then we can get a referral to an IR on those results. You don't have to be dependent on your Dr.

If you can afford it, why not fly down to Melbourne and see Dr Julie Gregg. She knows what she's doing.
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Postby Downunder » Wed Feb 24, 2010 5:22 pm

If I had a brain that didn't forget what I had planned to say, I'd have remembered that I wanted to say a BIG Thankyou to all our Aussie Pioneers, especially Marzy, Avantitech and Kezzcass.

You guys have made it much easier for those who follow. I, like many others, have been off on our own tack to no avail (my original IR, who was keen at first, has dropped off the radar!!).

Our very best to Aldo for next week. Can't wait for your report.

Regards Jennifer
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Postby CureOrBust » Fri Feb 26, 2010 12:06 am

CureOrBust wrote:OK, had an initial glance through a lot of the images, and all I could see was the below possible issue. But we are not talking anything too outstanding compared to others.
After I posted this, i realised that this image is more significant than I first realised. For example, the image is from a series taken about every 20degrees rotation. So, the image is probably not of the vein at its thinnest. Also, I would guess that the image was taken during the moment when the vein was under its greatest pressure, and hence would be more "pumped" than what it is at other times; ie still under pressure, just not the highest. Also, looking closer at the following images in the series, the vein actually appears to be getting even thinner, but it is harder to distinguish it from the other vessel it appears to be going around. did I forget to say Who-hoo!

CureOrBust wrote:Does anyone know if an MRV shows the outside diameter of the vein or only the blood flowing within the vein?
I asked my GP this same question, and he said it was only of the blood within the vessel.

And yes, Dr Vucic has received the above image. He also received a copy of my doppler exam which found a reflux in my IJV.
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Postby friday_fc » Fri Feb 26, 2010 12:24 am

OK, I TRIED!!

Below is my comment to the ABC's Catalist program's website:

"comments: Hi,
Curious where is the reporting on the most talked about new evidence on CerebroSpinal Venous Insufficiency and it's link to Multiple Sclerosis by Doctor Zamboni? Canada's CTV, England's BBC and numerous radio health programs, articles, personal Youtube pleas by sufferers, facebook groups, twitter groups, forums and many petitions and conferences, rebates, seminars and Stanford University, Hamilton Conference and Buffalo Research centres test results - this is a REVOLUTION in MS never seen before yet Australian sufferers are being kept in the dark? MS sufferers fighting MS Society and conservative Neurologists WORLDWIDE, for immediate action to stop the suffering and treat our blocked veins. We are forced to fund this ourselves and even then, the doctors do NOT want us swamping the MRI and Doppler scanning clinics - there's just too many of us and CCSVI is ALL we have. Where is your report? "

and this is the reply I got today:

"Thanks for your email. Your story suggestion is very interesting and should we travel to either Italy or the US in the near future, we may report on Zamboni's theory and the follow up trial in Buffalo in the US. However, it should be noted that on the BBC website article, Dr Doug Brown from the MS society states: "These results are intriguing but it is important to remember that although people with MS may show evidence of chronic cerebrospinal venous insufficiency in screening studies, there's no proof as yet that this phenomenon is a cause of MS, nor that treating it would have an effect on MS". So to call this an 'MS revolution' may be premature. In fact, the full results of the first stage of the Buffalo trial are not released till April.

That being said thanks for pointing out this recent piece of research, we will keep our eye out for the next phase of the trial to see if treatment of the veins has any effect on MS.

best regards,

Catalyst"


Ok forumers, honestly, I know I'm not the best representative or person to advocate for action into CCSVI, so I put it to the forum members here who can articulate a clever and more thoughtful response to their reply.

So if someone wishes to follow up while the iron's hot, here is their email.

catalyst@your.abc.net.au

I am, however, grateful that I got a response/acknowledgement and the topic is out there.
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snowballing Catalyst !

Postby hwebb » Sat Feb 27, 2010 1:15 am

Gotta say friday_fc ...I like your style! Yuor letter to Catalyst reads great. As you suggest "strike while the iron is hot" !

I wrote a letter to them too (apologies readers if some of my words are not quite right):

To whom it may concern,

there is a great interest internationally about the discovery of the potential cause of multiple sclerosis - coined Chronic Cerebrospinal Venous Insufficiency (CCSVI).

It is proposed that deformities of the veins draining blood from the brain to the heart trigger a cascade of events. As blood cannot drain from the brain in a timely fashion, it stagnates. Iron from the blood then builds up in the blood vessels, eventually damaging the blood-brain barrier. Immune cells can then cross the blood-brain barrier and attack the brain. The trigger and mechanism of blood vessel degradation is the same as that seen in malfunctioning leg veins. Proof that this mechanism also occurs in intra and extra cranial veins is in the form of MRI and Doppler analysis.

In many countries (including the USA and UK, as well as Italy, Poland, Bulgaria and others), diagnosis or treatment is offered for CCSVI. For instance:

UK: http://www.essentialhealthclinic.com/we ... etter.html
USA: http://www.bnac.net/?page_id=535



William Carroll (chair of the international review board for MS research Australia)

has already published a paper supporting ccsvi theory:



Wedge-shaped medullary lesions in multiple sclerosis
Journal of the Neurological Sciences, Volume 290, Issue 1, Pages 190-193
W. Qiu, S. Raven, J. Wu, W. Carroll, F. Mastaglia, A. Kermode


It is intriguing that there has been no Australian media attention given to this exciting development in the diagnosis and treatment of multiple sclerosis.This is surely the biggest development since MRI became the primary means by which brain lesions associated with multiple sclerosis were detected. Are you planning to cover this issue any time soon? It is of great public interest.

best regards, hwebb
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Postby warrenkole » Sat Feb 27, 2010 3:53 am

Hi all,
I thought I'd share my doppler results that I got from Dr. Julie Gregg on 18 Feb.

RIGHT--------------------------------SUPINE----------------ERECT
IJV AREA (mm2)-------------------259---(N 69-143)-------21---(N 9-25)
IJV DOPPLER VOL (ml/m)---------1009---(N 430-970)----903---(N 0-170)
VERTEBRAL AREA (mm2)----------9.4---(N 7.8-13.4)-----1.2-(N 8.3-15.5)
VERTEBRAL DOPP. VOL (ml/m)----21-42--(N 20-60)------58-(N 90-330)

LEFT---------------------------------- SUPINE---------------ERECT
IJV AREA (mm2)--------------------69---(N 69-143)--------4.5---(N 9-25)
IJV DOPPLER VOL (ml/m)----------289---(N 430-970)-----159---(N 0-170)
VERTEBRAL AREA (mm2)-----------3.7--(N 7.8-13.4)------3.3--(N 8.3-15.5)
VERTEBRAL DOPP. VOL (ml/m)-----12----(N 20-60)-------42----(N 90-330)

The report came back as normal on all counts.
Looking at my figures, it looks like my Right IJV is abnormally large compared to my left IJV which is below normal.
Does anyone know how they come up with a diagnosis of stenosis? Do they look at only the IJV's or the Vertebral area results aswell?
I'm keen to have an MRV done either in Melbourne or in Sydney to see if anything else shows up.

Cheers.
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Postby Opera » Sat Feb 27, 2010 4:06 am

Warrenkole

I do not have any understanding about the interpretation of results. But I hear that at times doppler results may not of itself be accurate because without a venogram the picture may not be complete.
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Re: MRV AT BLACKTOWN HOPITL

Postby seeva » Sat Feb 27, 2010 6:34 am

seeva wrote:HI Members I had my last appointment yesterday with my neurologist DR. STEVE VUCIC at the westmead M.S CLINIC IN WESTMEAD HOPITAL. He is now fully
supporing the CCSVI LINK TO M.S.Now he ready to send me any examinations i want. he has completely changed.He is send me to blacktown hospital for MRV exanination. if any stenosis are found in my neck or head veins then he can arrange a V.S in westmead hospital to do the liberation procedures.He all redy arrange a v.s who can willing to do the procedure.
SO IS VERY GOOD NEWS.If any one need to see DR.STEVE please contact
THERESE BURKE on 0298457997. phone early morning to her.I think one of our member CURE must have met DR.STEVE and gave the BLACKTOWN HOSPITAL MRV DETAILS . Thanks for his hard work.

Today MY FRIEND AND I had our trail doppler examination with DR. PAUL THIBAULT at his medical centre in newcastle. One of his technician and DR.PAUL were done the examinations.He found both sidesIJVS have reduced blood flow. But he like to check with his sonographer before his final report to me in two days time.For my lady friend he found the same result but her aztgos veins have some venous stenosis problems. she suffering from SPMS for last 24years. Her final result will be send her in a two days time.DR. PAUL is very helpful man.He already arrange a interventional radiologisist in ST' Vincent hospital to do the procedure. If all goes as planed then very soon he will setup a spical clinic in SYDNEY for this purpose.
regards
seeva :roll:

HI Frinds I have recived my final doppler scan report from DR.PAUL THIBULT today.The news is not good.According the DR.i have very severe
stenosis in my RIJV.HE wants to do the venography as soon as the radiologist in SYDNEY able to do.
regards
seeva :roll:
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Postby CureOrBust » Sat Feb 27, 2010 4:05 pm

warrenkole wrote:The report came back as normal on all counts.
Looking at my figures, it looks like my Right IJV is abnormally large compared to my left IJV which is below normal.
Does anyone know how they come up with a diagnosis of stenosis? Do they look at only the IJV's or the Vertebral area results aswell?
I'm keen to have an MRV done either in Melbourne or in Sydney to see if anything else shows up.
From your posted results and my non-trained medical eye on Zamboni's doppler studies, Dr Julie Gregg is not performing the whole doppler / ultrasound protocol as presented by Zamboni. Additionally, Zamboni's and your Dr's protocol appears to only look at the jugular. Ultrasound has a limited view around the head area due to bone etc.

I originally had an ultrasound performed by a radiologist instructed by a nuerologist specialising in stroke. They found no stenosis in my jugulars, but did find a reflux in my IJV. On my last MRV (shown above) I think it is clear there is a stenosis. From my understanding, the doppler-ultrasound is used to indicate incorrect flow parameters as well as possibly see a narrowing of vessels. I think in your case, the ultrasound raises the question as to "why is there a difference in your veins between the left and right?" (PS: my first MRV only showed this)
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Pioneers

Postby Opera » Sat Feb 27, 2010 11:15 pm

Thank you very much for all the Aussie pioneers who are going for treatment and sharing their information. They are taking CCSVI forward here.
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Postby nico » Sun Feb 28, 2010 1:29 am

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



ALL THE BEST FOR THIS THURS! cheers, nico
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