I am in doubt about CCSVI diagnostics

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

Postby jean-la-grenouille » Mon Jan 04, 2010 12:31 pm

Maybe I didn't anderstand very well the former threads, but I really disagree with any doubt about CCSVI diagnostics. Dr Franceschi found something wrong on my jugular veins, I could see this on a screen. Then, he tested himself for these veines and there were normal.
I think we just have to be patient and active.

Best regards
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Postby magoo » Mon Jan 04, 2010 1:30 pm

Dr. Dake has shown me my scans side by side, before and after, and it was undeniably THERE. Friends of mine who are doctors have looked at my scans and clearly saw what Dake found. Today I left my scans with my GP to look at and share with his medical friends who are interested. I have no doubt he will be amazed when he sees the blockages.
If there are any scams going on I would think it would easily be detected by sharing the scans with another professional. So far I haven't heard of anyone finding out their scans were fine, but they were operated on.
I know there are a lot of conspiracy theories. Some hold some truth. I feel in time and with more research there will be no stopping the CCSVI connection to MS.
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby Rainbolt » Mon Jan 04, 2010 3:10 pm

Just wanted to put forward that we can all worry about boogeymen (Big Pharma, in it for the money docs whoever...). I think actually seeing people who have had their MS reversed thorugh this etc... via sites like these really helps me to trust the idea that much more. Also seeing the MS societies who have referenced the possibility and are actually possibly helping to fund studies on it also makes me think hey hold on here MS Societies greatly funded by Big Pharma are even getting in on this... also there's a study currently by a pharmaceutical company on a medication that treats I believe high blood pressure and it's effects on MS... So Big Pharma may really like this too. Imagine if they could sell a lifetime supply of meds that were easier and cheaper to develop than biologicals like Tysabri?... There are pros and cons of course, they may have to lose customers with MS to their Disease Modifying Drugs at present but those drugs treat more than just MS so all of that wouldn't go to waste and they'd just need to develop less and get on to the circulatory drugs that could save people from having to risk surgery...


All of the info on CCSVI makes sense to me and I would be willing to get fixed up ASAP because of where my disease is at and where it could be by the time proper studies are concluded... Desperation puts me in this situation. We do need to think reasonably but we shouldn't go off the depend about the boogeymen there are pros and cons for them with this too. The only big bad boogeymen I see are the ones unwilling to consider this because they have too much of themselves invested in the other theory.. They should be invested in helping their patients not in their reputation to figure it out themselves or no one has a hope of getting better in their care! R I D I C U L O U S!!! But I digress lol sorry all that was a bit of a vent...
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Postby ndwannabe » Mon Jan 04, 2010 4:24 pm

Thank you all for such unanimous vote for the validity of the procedure :)
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Postby Billmeik » Mon Jan 04, 2010 6:35 pm

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


In the original zamboni study there were dozens of controls- people without ms- and people with other autoimmune disorders. 0% had ccsvi.

The only rip off I can see in all this is clinics charging for false negatives.
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Postby Mechanicallyinclined » Mon Jan 04, 2010 7:04 pm

I'm confident we're heading in the right direction. We can talk of rip off's or whatever, but we have to realize that this is a learning process for any clinics starting to test for this. What one might is a rip off because nothing was found could just be a glitch in their learning process. False Creek is recalling the initial people they tested becuase they found they weren't doing the test totally up to par. That's a positive.
Most of us are lucky to be able to rely on some of the pioneers here that have been tested and treated. We should learn from what they are telling us. Educate yourself as much as you can so you know what's going on.
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Postby Cece » Mon Jan 18, 2010 10:37 am

I think that Dr. Dake at Stanford and the Buffalo researchers would actually have a lot more to lose, reputation-wise, than gain if they jumped on a CCSVI bandwagon that wasn't legitimate. They've got long careers to think about and if this was a scam or a flash in the pan, it would be over pretty quickly.
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Postby ClaireParry » Mon Jan 18, 2010 11:21 am

That's right Cece. I agree. All we can do is await the results of this trial to substantiate Zambonis and hope the results are what we are lookinjg for. I find it hard to believe they won't be but never say never.

Putting thr science and the medicine behind it would be a callous man who had a trial run on his wife and then paraded her as a success if there was no success.

A Vascular Surgeon I know here in the UK can fully appreciate the research and totally sees the correlation. However, every neurologist he has spoken to puts it doen. Surprised??

One thing I like to remind people of is that this isn't a new theory, more an old one revisited.

My MS means I'm probably rambling now and this lot prob doesn't have anything to do with the initial thread! Oops :roll: :roll:
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Re: I am in doubt about CCSVI diagnostics

Postby Ana » Mon Jan 18, 2010 11:57 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?



Easy Reply: No.

I went to Dr. Simka last September and he did the ultrasound scan. To my surprise he said he didn't find any problem with my veins. And I know that another woman from our German forum did also get a negative result by Dr.Simka.
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Postby highhopes » Mon Jan 18, 2010 12:40 pm

edit
Last edited by highhopes on Fri Feb 05, 2010 11:20 am, edited 1 time in total.
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Postby sou » Mon Jan 18, 2010 12:46 pm

Hi.

It is the very beginning, that's all.

6th century BC: Thales calculates the radius of Earth and several centuries later Aristarchus talks about the heliocentric model: the Earth is just a planet going round the Sun.

approx. 1 AD until Gallileo: The Earth is flat, because everybody see it with their own eyes as flat.

Gallileo till the first rocket launch: All evidence shows that the Earth is a sphere going round the Sun. It certainly can't be flat.

Today: The Earth is a sphere and we have seen it with our own eyes.

I don't know why am I telling all of these. Maybe reading some books about the planet has interfered with my thoughts. But it is very parallele with the MS story.

Putnam is Thales.
Schelling is Gallileo.
Zamboni, Dake, Simka and ... must be the astronauts.

I only hope that the CCSVI theory will someday be the answer to MS, because the flat/autoimmune one has been leading to dead ends for many decades.

sou(r)
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."
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Postby Dovechick » Mon Jan 18, 2010 12:51 pm

Thank goodness for that Highhopes, if even the untrained eye can see the problem there can be no doubt about it, and whether you believe that CCSVI is nothing but a co-incidence or not, these results still mean that ther is something wrong with you that can be fixed.
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 magoo » Mon Jan 18, 2010 1:35 pm

I have had 3 (GP's) doctors look at my scans that Dr. Dake took and they ALL were shocked by them! They all agreed that it was a necessary surgery. No scam here. Dr Dake would not be putting his career on hold for the clinical trials if this were not HUGE!
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby cah » Mon Jan 18, 2010 1:46 pm

sou wrote:approx. 1 AD until Gallileo: The Earth is flat, because everybody see it with their own eyes as flat.

Gallileo till the first rocket launch: All evidence shows that the Earth is a sphere going round the Sun. It certainly can't be flat.

Today: The Earth is a sphere and we have seen it with our own eyes.


Yeah, well, and in 1992 even the catholic curch, which would be the MS-Societies in this analogy, officially admitted that galileo was right ;)

:lol: :lol: :lol:
"There is only one good, knowledge, and one evil, ignorance." Socrates
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Postby sbr487 » Tue Jan 19, 2010 12:56 am

To me the start of clinical trials was the next big jump to formalize ccsvi. And unless someone has great deal of conviction, I don't think they would have jumped for clinical trials.
The other reason for clinical trials would be by folks who would like to disprove Dr Z et all that they are wrong, but somewhere deep down they really don't have conviction about what they are saying. Currently, these guys are in reactive mode and are really living in a state of denial.
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