I am in doubt about CCSVI diagnostics

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

I am in doubt about CCSVI diagnostics

Postby ndwannabe » Sun Jan 03, 2010 6:04 pm

There is a talk about Neurologists not "buying" into the CCSVI idea because their bread and butter is in immunodepressants.

There is a talk about pharma industry not supporting CCSVI research for the same reason.

There are mentions about other not financially involved one way or another doctors and technicians NOT "seeing" the stenoses in the veins in their tests.

Can it be then, that the doctors who ARE performing CCSVI correction procedures are indeed interested (financially and otherwise) in seeing the abnormalities? Hence, enticing their patients who come for testing to undergo the surgery?

I would be very interested to have a non-MSer ask for a Dopler test.

Yes, I don't trust anyone anymore :(
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Postby oreo » Sun Jan 03, 2010 8:03 pm

That is why I am looking forward to the results of any studies done here in Canada where there is no connection between the doctors and big pharma.
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Postby Johnson » Sun Jan 03, 2010 8:26 pm

That is why I am looking forward to the results of any studies done here in Canada where there is no connection between the doctors and big pharma.


I wouldn't go so far as to say that there is no connection, perhaps just not as entwined as other jurisdictions. I have run into many Canadian doctors with a whack of pharmaceutical "samples". I think that the real difference lies in the hospitals, which are not beholden to share-holders in Canada.
My name is not really Johnson. MSed up since 1993
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Re: I am in doubt about CCSVI diagnostics

Postby Sotiris » Mon Jan 04, 2010 12:49 am

ndwannabe wrote:[...]Can it be then, that the doctors who ARE performing CCSVI correction procedures are indeed interested (financially and otherwise) in seeing the abnormalities? Hence, enticing their patients who come for testing to undergo the surgery?

I would be very interested to have a non-MSer ask for a Dopler test.

Yes, I don't trust anyone anymore :(
Generally speaking this is always a possibility but I don't think that this is now the case.
As a matter of fact, there are three main groups that have performed angioplasties for treating CCSVI.
Zamboni's group could find CCSVI in all MS patients (also when the tests were blinded and included healthy controls). The same happened when he replicated his research together with Zivadinov's group (8 MSers + 4 healty subjects from Italy and the same numbers from US).
The other two groups are Dr Dake's and Dr. Simka's. About half of Dr. Dake's patients and a handful of Dr. Simka's have already reported on this forum about how much better they feel after the procedure and many have provided pictures of their stenosed veins.
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Postby ndwannabe » Mon Jan 04, 2010 1:17 am

Yes, that's exactly my point - all three groups are financially and otherwise interested in seeing the abnormality.

Or as Lyon eloquently (and sarcastically :lol: ) put it:

Lyon wrote: Especially in this kind of situation in which the imaging is evidently so complicated that only the researchers who are CCSVI proponents are capable of seeing the stenosis and thereby are evidently the only people cable of determining when stenosis doesn't exist.


Testimonies of people is what is holding my hopes up. Even though I have not been on the board long enough to "know" them / all of you.
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Re: I am in doubt about CCSVI diagnostics

Postby ErikaSlovakia » Mon Jan 04, 2010 1:30 am

ndwannabe wrote:There are mentions about other not financially involved one way or another doctors and technicians NOT "seeing" the stenoses in the veins in their tests.

Can it be then, that the doctors who ARE performing CCSVI correction procedures are indeed interested (financially and otherwise) in seeing the abnormalities? Hence, enticing their patients who come for testing to undergo the surgery?

I would be very interested to have a non-MSer ask for a Dopler test.

Yes, I don't trust anyone anymore :(

Hi,
well, I saw my problematic blood flow in my vein very, very easily on the screen "real time" while the doctors were doing Doppler, I saw it very clear on my MRV in Poland as well.
If doctors use the correct technique and correct software it is usually easy to detect it and to see it. It takes little bit of time to learn it. It is just question of training. I am sure they will learnt it soon. If they want to of course.
Do not forget that Dr. simka spent couple of years in this project!
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby Mechanicallyinclined » Mon Jan 04, 2010 1:40 am

I supposed anyone could be doing anything for the money, but before they do it on me I would want to see the abnormal vein on the scan myself. Do I honestly know what a normal vein looks like right now? No but thoughts like this just make me want to educate myself a little more.
No one should be jumping into the fire (or under the knife) without getting somewhat educated on whats going on here, especially when this is so new. If anyone is the type of person here that hasn't investigated this a bit and jumped in with both feet, they deserve what they're getting. Not a nice thing to say, but it's true.
As far as clinics that might just be doing tests and saying "No sorry we can't see anything" ,yes this could be a money grab. Follow the links of people that have been tested, do the research and educate yourself. What else can you do? We are't buying some cheap toy here. You're making a significant decision with your life. I'm following the leads of some of the major players here and relying on their information for the most part.
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Conspiracy Theory

Postby MarkW » Mon Jan 04, 2010 4:18 am

Hello ndwannabe,
There is a lot of rubbish posted on this site about evil people not wanting pwMS to find out if they have CCSVI and get it treated. Please ignore it. Instead, find a Investigational Radiologist (a specialist doctor) who is willing to perform an MRV, after reading the relevant papers. The same person should be able to perform angioplasty to reverse the CCSVI.
This is not easy as the Zamboni correlation (MS and CCSVI) has not been verified by a second research group, so is very new.
The conspiracy says doctors are stopping people getting treatment and big pharma industry is working against CCSVI (is there any evidence on this ?).
The conspiracy theorists also say that neuros are active against CCSVI. Why ask a neuro about CCSVI ? Would you seek a neuro's advice about restricted arteries ? so why ask them about restricted viens ?
Please try to think about this logically and read:
http://csvi-ms.net/en
Much more accurate than accepting, as gospel, any posts on this site. This site is heavy reading and slightly biased (towards CCSVI) but is the best source of info.
I am one of the bad guys because I am an Industrial Pharmacist who has spent the last 7 years reading about MS. What would I know ?
End of my New Year rant,
Kind regards,
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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Postby escape_goat » Mon Jan 04, 2010 5:24 am

This is why the outcome of double-blinded studies are so important ... I know of at least one underway at Buffalo, but not sure when they will release the info. This is for detection of CCSVI, not, to my knowledge, for any method of treatment.

If big pharma is involved in some conspiracy to suppress CCSVI, perhaps big stent is involved in some conspiracy to promote it? Or the Society for Vascular Surgery? ;) My point is, no matter what the outcome of this research, someone stands to make a *lot* of money off of us. The double-blinded studies remove (hopefully!) this conflict of interest, and am excited to find out of the results.
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Postby sou » Mon Jan 04, 2010 5:28 am

For the time being, CCSVI seems a better candidate than the long standing equally unproven autoimmune theory, which has offered little to no relief 50 years now.

I don't think there is any kind of conspiracy, but every doctor is quite selfish to think that he/she was wrong for so many years. "It HAS to be autoimmune or else I am an idiot! Since I am no idiot, it is autoimmune!" This is science, isn't it?

Do you remember Voyager I and II, the spaceships? If somebody was onboard expecting to reach the moon, would he ever do it going this way? "But I have been traveling in space for 30 years! The moon must be round the corner!". Oh, yes. But you have been traveling the wrong way... Even if you go towards this direction for 1 zillion zillion years, you won't reach the moon.

sou(r)

PS: Personally, I have seen the flow of my left IJV missing, while the right IJV was larger than it should.
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."
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CCSVI and money/politics

Postby Dovechick » Mon Jan 04, 2010 7:33 am

I'm not really sure who is likely to be making lots of money with CCSVI . I don't think it is Doctor Simka in Poland. I have heard that the procedure (testing and intervention) cost $80,000 in the States but only costs maximum $7000 in Poland. Why the difference? Some of it will have to do with the cost of equipment and wages... some of it to do with insurance... But it is a big difference.
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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Postby sou » Mon Jan 04, 2010 8:08 am

And balloon angioplasty is much cheaper than stent placement.

sou
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Postby bestadmom » Mon Jan 04, 2010 9:29 am

If treating CCSVI thru an intervention is a one shot deal, no matter what the potential profits are, this is not an annuity like the drug business is.

Dr. Dake is a private doctor at a private hospital. Not every doctor at every hospital in the US is run this way. My IR is a salaried employee at a public university hospital and a city hospital. He has nothing financial to gain by doing any work what so ever, except to keep his job long enough for the pension to kick in.
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MS is complex and multi-factorial

Postby MarkW » Mon Jan 04, 2010 10:29 am

MS is a very complex disease otherwise there would be a complete cure by now. I hope that CCSVI treatment will stop progression but I think it improbable that the immune system will correct itself immediately. So a possible picture is have CCSVI treatment after diagnosis. Then checkups to confirm it is still OK, every year or so. Plus drugs to keep the immune in balance. Remember pwMS still will have genes for MS so don't expect CCSVI to be a cure.
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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Re: MS is complex and multi-factorial

Postby Dovechick » Mon Jan 04, 2010 11:07 am

MarkW wrote:MS is a very complex disease otherwise there would be a complete cure by now. I hope that CCSVI treatment will stop progression but I think it improbable that the immune system will correct itself immediately. So a possible picture is have CCSVI treatment after diagnosis. Then checkups to confirm it is still OK, every year or so. Plus drugs to keep the immune in balance. Remember pwMS still will have genes for MS so don't expect CCSVI to be a cure.
MarkW

Agreed MS is complex and likely to be a combination of a number of variables that manifest differently in different people. In my family the female line demonstrates a number of symptoms associated with Connective Tissue Disease (CTD), additionally my daughter has a Scottish father and all those genetic components has resulted in an MS diagnosis for her. The Liberation procedure is likely to address the narrow veins in her neck which may be the result of CTD.
The Liberation procedure may just be one aspect of treatment that helps pwMS.
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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