simple CCSVI

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

Re: simple CCSVI

Postby David1949 » Wed Oct 12, 2011 1:10 pm

Lassy wrote:Cece seriously get a life. Like in the previous post unless you hear something FIRSTHAND from a DR from any clinic yourself your copy and pastes from others is a complete waste of everyone's time. Grow up.


Lassy
Cece is one of the nicest people on this forum and one of the most knowledgeable on CCSVI. Your rudeness to her is uncalled-for.
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Re: simple CCSVI

Postby esta » Wed Oct 12, 2011 1:17 pm

ditto re cece - cheez louise let it go!!!!!!!!!!!!!!
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GOLD STANDARD - who uses the best diagnostic tools ?

Postby MarkW » Wed Oct 12, 2011 1:34 pm

Please take a look at this thread:
chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic18063.html
SynergyHealthConcepts relies on Prof Haacke's MRV protocol?? I have not heard/read that he can diagnose all CCSVI syndrome problems using it. Leading practice says that cathereter venography and intravascular ultrasound are required in combination. I collected this information for the UK's NICE consultation and circulated it to Prof Zamboni and others. That is why I start the GOLD STANDARD thread.
If Lassy or anyone at SHC wants to argue with anyone then argue with me. I do not hide behind a nom de plume and am very public in my comments on CCSVI syndrome.
MarkW

PS Cece only seeks to give good info to pwMS, many of whom struggle to finance the procedure.
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Re: simple CCSVI

Postby Lassy » Wed Oct 12, 2011 1:44 pm

Just trying to make a point she is not hearing alot first hand its all 2nd, 3rd hand and that is not facts.
If Cece is knowledgable on CCSVI then she has more homework to do apparently.
This thread is same nonsense poor Dr Sal Scalfini is going through with ridiculous bashing from those who have never been treated by or met the Dr either.
This is why groups such as this one are a waste of time. pwMS get the facts right from a Dr not anyone else.

Dr Haacke MRI information is here Mark

http://www.ms-mri.com/index.php?site=why
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Re: simple CCSVI

Postby MrSuccess » Wed Oct 12, 2011 1:59 pm

TIMS members .... let's not take the bait .....

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Re: simple CCSVI

Postby 1eye » Wed Oct 12, 2011 2:17 pm

Telling people they are spreading gossip, hearsay and rubbish is inflammatory and will get you nothing here but ignored. I think the doctors who are legitimately working in CCSVI research and treatment do not have anything to prove to people in this forum, and have had to face down many critics with very real qualifications. People in these parts will understand over-sensitivity, as they have been the objects of a lot of negative attention. But please, criticizing Cece's posts will not make her go away. She has a life, and a large part of it has been dedicated in the last couple of years, to making sense of the whole CCSVI situation, helping those pwMS who are interested in the CCSVI procedure, science, medical research, etc. As a consumer she has been most vigilant on their behalf.

I am not trying to dissuade anyone from getting anybody's treatment, as I do not have enough knowledge or information, but I do believe that such vigilance is necessary. I think those in this forum generally don't want anyone to get a free ride on the backs of sick people. A lot of potential CCSVI patients read and heed what Ceci says. She has proved herself to them, and if you read this forum from its beginning, you would see that. She has had her procedure, and has no conflicting interests.

Nobody is unique in offering "the full Haacke protocol" (sounds like a wrestling hold :^) unless Dr. Hubbard's Foundation is the only one, or is not offering it anymore. I received email from them this morning:

Hi 1eye,

Correct, the physicians here prefer to use catheter venography and MR Venography.

Alexandra

On Oct 11, 2011, at 9:45 AM, 1eye wrote:

> So far I have not seen any information (and I believe I have good sources) that leads me to believe you use IVUS, though I was hoping you did. This requires experience, and I would be concerned if you said you had just started to use it. Please let me know if I am wrong about this. It is a necessary part of CCSVI procedures, used by a few people in the US. Thanks.
>
> On 10/10/2011 2:03 PM, Hubbard Foundation wrote:
>> The pre-treatment testing is MRI Venography, which is a non invasive test. Once at the treatment facility, the IR will use catheter venography to look at the veins in real time, prior to ballooning. If you would like the name of the instrument they use, I would be happy to find out that information.

* In the above, I changed my name.
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Re: simple CCSVI

Postby Cece » Wed Oct 12, 2011 4:13 pm

I was thinking about this thread and I think it would be good to reframe this not as hearsay but as feedback. If some of what patients are saying is misinformation, that does not mean Synergy meant for them to be misinformed, but it has still happened. The main misinformed belief has been that only Synergy treats the area of the valves. I have heard this from a number of posters, and those links could be provided if needed. This is feedback, nothing more. It is in everyone's interests to have patients be accurately informed.

pwMS get the facts right from a Dr not anyone else.

Which doctor? They are not all in agreement...in fact, I think it is especially informative to know what the doctors disagree on.

btw thanks 1eye, MrSuccess, MarkW, esta, and David....it is my aim to help out and to keep things accurate...and I include TiMS among the good things in my life, although by no means the only good thing!
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Re: simple CCSVI

Postby David1949 » Wed Oct 12, 2011 8:13 pm

Lassy
As I said Cece is a very nice person, but I am not. So let me dissect some of your comments:

You said, "I hate Tims because no one says their real names ..."
So let me ask you, is Lassy your last name or your first? And if you hate TIMS why do you come here?
BTW using a screen name is a good idea. If you knew our names you could probably find out where we live. Why would we want you to know where we live? For all we know you could be the next Unabomber. You seem to have the demeanor for it.

You said; “Otherwise make your time more productive than being a shit disturber.”
Wow look who’s talking. I haven’t seen anyone stirring it up as much as you in all the time I’ve been here.

You said, ” This thread is same nonsense poor Dr Sal Scalfini is going through with ridiculous bashing from those who have never been treated by or met the Dr either.” If you took the time to look around before you started your own bashing you would have seen that Dr. Sclafani is a regular contributor here and has his own thread. He is well respected here, especially by Cece.

You said, “This is why groups such as this one are a waste of time. pwMS get the facts right from a Dr not anyone else.” Ok so stop wasting your time and as for getting our info from doctors, would that be our neuros who don’t even believe in CCSVI?

You joined this forum only yesterday and immediately picked a fight with one of the most well-liked posters. Bad idea!
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Re: simple CCSVI

Postby Cece » Thu Oct 13, 2011 6:28 am

David1949 wrote:You said, ” This thread is same nonsense poor Dr Sal Scalfini is going through with ridiculous bashing from those who have never been treated by or met the Dr either.” If you took the time to look around before you started your own bashing you would have seen that Dr. Sclafani is a regular contributor here and has his own thread. He is well respected here, especially by Cece.

Does she mean that there is some other forum or social media site where this is going on?

I gotta say, this thread did not go where I expected it to go. I started the thread to share the graphic, which I saw as usefully simple. I've also liked Dr. McGuckin's (of VAC, not Synergy) graphic that he uses post-procedure to show patients what he's treated. It is a simple drawing of a body, where he can mark the areas that were treated.
Last edited by Cece on Thu Oct 13, 2011 7:56 pm, edited 1 time in total.
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MRI is not Gold Standard Diagnosis

Postby MarkW » Thu Oct 13, 2011 2:09 pm

I (MarkW) wrote:
SynergyHealthConcepts relies on Prof Haacke's MRV protocol?? I have not heard/read that he can diagnose all CCSVI syndrome problems using it. Leading practice says that catheter venography and intravascular ultrasound are required in combination. I collected this information for the UK's NICE consultation and circulated it to Prof Zamboni and others. That is why I started the GOLD STANDARD thread.

Lassy replied:
This is why groups such as this one are a waste of time. pwMS get the facts right from a Dr not anyone else.
Dr Haacke MRI information is here Mark
http://www.ms-mri.com/index.php?site=why

MarkW comments:
Haacke protocol does not promise to detect all instances of CCSVI syndrome. If anyone at SHC with a name wants to argue with me then lets hear you. PwMS can read that the GOLD STANDARD diagnosis for CCSVI syndrome utilises catheter venography and intravascular ultrasound in combination with an experienced interventionalist. MRI (Haacke protocol) is a useful tool but may miss instances of CCSVI syndrome.

Wasting my time ?? Simply analysing data rather than opinions.

MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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