CCSVI - Aussie Action!

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

Re: RE CCSVI PROCEDURE IN SYDNEY

Postby CureOrBust » Wed Aug 25, 2010 6:07 pm

seeva wrote:also he has told me he will looked at all the veins including azygos vein.he does proper testing though and re balloons of and clear the stenosis. in my case my LJGV was very narrow and was balloned my azygos is fine.
Has anyone treated in Sydney had issues found in their Azygos? or any vein other than their Jugular?
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Postby CureOrBust » Fri Sep 10, 2010 6:49 pm

It been quite here :?
I was wondering, has anyone in Australia had IVUS used?
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Postby bree » Fri Sep 10, 2010 9:36 pm

8O
Everyone is in shock at the decision on Prof T trials at the Alfred Hospital in Melbourne.
Left in utter shock and speechless in disbelief.............
... and of course very, very :evil:
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neuro referral?

Postby hwebb » Sat Sep 11, 2010 2:00 pm

If you have ever had a neuro referral to Prof T ...could you please PM me?
People who fell outside the trial (those who sought treatment before the idea of a trial was raised), now need a neuro referral to Prof T in order to receive follow up treatment.
My neuro at RMH has stated that the neuro dept at RMH has a policy to not provide referrals to Interventional Radiologists (evenn when already diagnosed with a vascular disease). Nice to know that pateint care is their first priority.
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Postby CureOrBust » Sat Sep 11, 2010 4:35 pm

If anyone has received a neuro referral from someone in Sydney, please PM me? :oops:

Does anyone know what the neuro would have to write on the referral to allow an IR to treat? I am guessing it would be easier for a neuro to write the referral to an IR if they do not have to mention MS or CCSVI.
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Postby CureOrBust » Tue Sep 14, 2010 3:01 am

If anyone is seeing Professor Pollard in the coming weeks, and would like to discuss CCSVI, bring the following list with you. http://www.thisisms.com/ftopicp-133768.html#133768 A year ago when I questioned him on CCSVI for the second time, he simply said that he was about to leave for ECTRIMS 2009, and if it meant anything in MS, it would be presented at ECTRIMS.

Has anyone discussed CCSVI with him recently? A year ago he wasn't a believer. I almost want to see him again just to know if he has changed his view at all.
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diagnosis and management

Postby hwebb » Tue Sep 14, 2010 1:50 pm

CureorBust, the referral could say something along the lines:

"please accept this patient for treatment of their vascular disorder"
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Re: diagnosis and management

Postby CureOrBust » Wed Sep 15, 2010 2:12 am

hwebb wrote:the referral could say something along the lines:
"please accept this patient for treatment of their vascular disorder"
That's what I was hoping to avoid. To sign off this statement, they would be accepting that I have a vascular disorder, when in the neuro's eye's I have MS, an immune disorder.
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get more accurate

Postby hwebb » Wed Sep 15, 2010 1:29 pm

well, you could request the referral say "my patient has a blocked vein preventing adequate brain drainage, please provide advice and management" or just "my patient does not have adequate brain drainage".

All true
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Re: diagnosis and management

Postby nico » Thu Sep 16, 2010 12:10 am

CureOrBust wrote:
hwebb wrote:the referral could say something along the lines:
"please accept this patient for treatment of their vascular disorder"
That's what I was hoping to avoid. To sign off this statement, they would be accepting that I have a vascular disorder, when in the neuro's eye's I have MS, an immune disorder.


the contentious bit is that you have both! Evidenced by Doippler and venogram, l presume. l'm most likely being overly cautious and l apologise for interfering, but PLEASE be very wary of saying that CCSVI 'causes' MS - you'll only put yr neuro's back up, and earn yourself the 'double-blind, placebo-controlled' spiel. As a matter of interest, why should u be the one responsible for supplying appropriate words anyway? lf he/she asks why the referral must come from them, simply state that it's an Ethics Comm requirement. why should we be the ones to go thru hoops? cheers, nico
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The Alfred liberatos - call for united action

Postby hwebb » Fri Sep 17, 2010 2:48 am

If you or your partner has received CCSVI treatment at The Alfred, and may like access to future treatment there, please post a message or PM me. I am in the process of taking action, with the aim of securing future treatment for us. I will require your email address to get further info (attachments etc) to you. Alternately, feel free to contact me on the CCSVI Australia FaceBook site.

thanks in advance, Helen
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Postby Downunder » Sun Sep 19, 2010 7:05 pm

Dear Friends,

The gloves are off.........

Kerri has drafted a letter to the Ethics Committee at the Alfred.
It is for all those who have had the procedure, but now not allowed another til we have a neuro's referral.

You don't have to be on facebook to access this, it is an open page.

We need ALL Alfred Liberatos to send the letter. We will only have weight in numbers.

http://www.facebook.com/notes/ccsvi-aus ... 4333521552

If you have any problems, questions etc, ask away.
Jennifer
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Postby taxi » Mon Sep 20, 2010 6:49 am

Hi, it's been a while since I posted but we haven't been idle.

We had a talk with our new neurologist, Dr Judith Frayne, who happens to also be on the ethics committee and is aware of Prof T's work.

She told us that her understanding of the outcome of the committee meeting was that no CCSVI related angioplasty was to be done AT ALL, neurologist referral or not. This was not her decision, and she made a point of telling me that she absented herself from the vote.

I am sorry to be the bearer of bad news, and I really hope I'm mistaken.

In response to this I have started a blog and have posted a long summary of the discussion that I had with Dr Frayne. It's too long to reproduce here but please take a look at what we discussed:

http://arubberchicken.tumblr.com/

The outcome completely sucks but it's just the first step in what I think will be quite a long process.

Science is both helping us and failing us at the same time. :-(
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more info

Postby hwebb » Mon Sep 20, 2010 1:49 pm

Hi Taxi,

I have it in writing from The Alfred that if I am able to secure a neuro referral, I can continue my vascular treatment (as I've already been diagnosed by venogram, and have commenced a vascular maintenance plan with them).

I also have it in writing that The Alfred are not able to treat a new vascular problem I suffer, behind my knee. This is because I have MS. The letter strongly implies I will need a neuro referral for this too.

All in writing from The Alfred...not just Frayne's throwaway words that she drizzles out to patients behind closed doors.

I personally know of one person (an Alfred liberato...already liberated...just seeking follow up treatment) who has accessed angioplasty at The Alfred in recent weeks as was able to secure a neuro referral (from a semi-retired neuro who is not accepting new patients).

Either Frayne has crossed wires, or the Interventional Radiology team does. It's amazing that Frayne says she knows so much about what was decided in this meeting, if she made herself absent at the criticial time.

I'd really like her to get online and blog, or contribute to some of the public discussion - really stand by her opinions. Put them out there in black and white.

Anyway - thanks for the snapshot into how the members at The "Ethics Committee" operate. They need to get used to explaining themselves...they'll be feeling some heat shortly :)

BTW - love your blog, thanks for sending the link. I'll keep reading this in the future :)

H.
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Postby Downunder » Mon Sep 20, 2010 4:34 pm

I spoke to the good Prof's PA yesterday and she said as far as she knew we're still able to continue treatment provided we have a neuro referral.
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