A doctor's questions re: CCSVI

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

Postby jay123 » Tue Dec 22, 2009 6:11 am

Dr. Gross posted the following -

Dear Jay, Marc, & everybody following this exchange:

Thank for your posts and infos. I am currently in Vienna (old mother is having eye surgery)and need a little more time to look at all this carefully in more detail and think about it before responding fully.

Best regards,
Karl F. Gross, MD

--

Assuming this is really Dr. Gross (and I think it is) let's not attack until we hear more from him. He has MS, he is a doctor - perhaps we can make a friend of him and have another voice who might be able to help promote this. I posted a message asking him to stop in here and post.
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Postby msh » Tue Dec 22, 2009 9:16 am

no I didn't post it on the Buffalo site. I am too busy just trying to find a radiologist or neuro who will do the testing in the metro NY area.
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Postby ozarkcanoer » Tue Dec 22, 2009 9:20 am

jay123,

I completely agree. Doctors are just people too just like the rest of us. Give the guy a chance to catch up on the research !!

ozarkcanoer
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'Correlation' and 'Causation'

Postby MarkW » Tue Dec 22, 2009 9:22 am

Dr Gross wrote: As a general principle, 'correlation' never proves 'causation' - an extremely important point to keep in mind always.

This is absolutely correct. It appears to be not understood by many posters on the site. At this stage Prof Zamboni has shown a correlation between CCSVI and MS. He has also shown it is possible to treat CCSVI using angioplasty at low risk. The Buffalo study should show that there is a correlation between CCSVI and MS with a meaningful sample size.
It is logical for people with MS to want to have this procedure performed on them as soon as possible as MS is a progressive disease, provided they understand the risks. MS has been known about for over 100 years and its causes are unknown. CCSVI could provide future paths for investigation of the cause of MS.
Obviously not a message the conspiracy theorists want to hear but the truth is sometimes painful.

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 CureIous » Tue Dec 22, 2009 10:23 am

msh wrote:no I didn't post it on the Buffalo site. I am too busy just trying to find a radiologist or neuro who will do the testing in the metro NY area.
michele RN


Wouldn't be a thing to copy/paste it over there with your permission, he might not have time or inkling to come in here.

Mark.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Dr Gross and MS

Postby Dovechick » Tue Dec 22, 2009 10:32 am

If you consider how many new research documents are published each months it is not surprising that not all doctors know about CCSVI even if theyr are neurologist with a good reason to look into new research.
We have to remember also that neurologists have their mind set on the autoimmune theory which precludes them from looking outside the box for alternatives. So we need to cultivate this doctor that has a high motivation to do something different to help himself.
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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A doctor's questions re: CCSVI

Postby jfhcrgvr » Tue Dec 22, 2009 4:19 pm

I'm a newbie here, but have been thoroughly obsessed with reading about CCSVI since a friend sent me the link to the W5 broadcast a few weeks ago. My wife, Jacqui, whose RRMS seemed to morph into SPMS about 17 years ago (first anecdotal symptoms were 41 yrs ago) has a new pt appt with a neuro tomorrow. She was a pt of the late Stan van den Noort, a loving and dedicated clinician, researcher and professor, for some 20+ years.

I'm very pleased to see Dr. Gross' questions here and hope that he will participate actively once his mother has had her procedure, which I hope goes well.

I am employed as a non-medical professional at a regional hospital with both neurosciences and cardiovascular institutes/centers of excellence, and I have passed along information about CCSVI to others in leadership positions, one an interventional radiologist who knows Dake, asking them to consider participating in the current research or pt screening.

The neuro we will see tomorrow is the first named head of the newly established MS clinic for this hospital, and I look forward to discussion with him tomorrow. I will be happy to share what I learn.

Steven
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Postby ozarkcanoer » Tue Dec 22, 2009 4:26 pm

jfhcrgvr,

Hey that is really good news ! I hope this new neuro has some good thoughts about CCSVI ! I am looking forward to your next post !

ozarkcanoer
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getting the messag across.

Postby Dovechick » Wed Dec 23, 2009 6:58 am

Go for it jfhcrgvr.
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 Billmeik » Thu Dec 24, 2009 8:54 pm

my wife whos a doctor asked almost the same questions. Of course it's kinda cool watching her get skeptical of the skeptics lately..
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question related to MS and CCSVI not "found" afte

Postby coin » Fri Dec 25, 2009 5:55 am

Hi there from germany, we heard from an MS patient who had been tested ( we do not know which method or protocoll was used, but apparently doppler as well as MRT have been used) and nothing was found.The question my husband ( ms) and me are now having is , are there more people with MS out there where nothing was found after testing and is that due to the method doctors are using or that is just the way it is? and does anybody have some good references apart from Dr Reichenbach in Germany?Merry christmass to all!
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A Doctor's Questions re: CCSVI

Postby jfhcrgvr » Fri Dec 25, 2009 2:34 pm

The neuro my wife and I saw on the 23d was dismissive of the theory re CCSVI. I suppose I should not be surprised, but I can't help but feel disappointed. He was, however, not averse to having an ultrasound done of her neck veins. His comment was that there will likely be some atherosclerotic stenosis visible attributable to age and lifestyle.

I'm keeping a very open mind and hopeful attitude, though, and will be very interested in seeing what the Buffalo, UBC and other studies show.
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doppler tests

Postby Dovechick » Fri Dec 25, 2009 6:02 pm

Coin, unless the operators/doctors are specially trained and the doppler machines calibrated using a special algorithm it is very likely that nothing will show up or will be recognised. I have heard of other people who have had similar experiences and have then sent their images to people trained in the procedure who were able to pin point the problem.
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 Lucy1021 » Fri Dec 25, 2009 8:15 pm

Hi everyone, I am very new here and have been doing a lot of research on the CCSVI treatment. My mother was diagnosed with MS over 20 years ago, and is now secondary progressive. My question is, of the MS patients that were tested, how many were RRMS, SPMS, and so on, and how did results vary (if they did at all)? I'm sure this question has been asked somewhere else on the forum, but I am having trouble finding the answer.

I think there is just so much confusion, frustration, and excitement over this incredible breakthrough that it is absolutely normal for people, including some doctors (who may or may not fully understand it), to be skeptical about it.
As of right now, I feel there is So much I do not know nor understand, but I hope more information and research is done so that people like me (without any medical knowledge whatsoever) can understand it more clearly.
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visiting the site

Postby karlgross » Sat Dec 26, 2009 1:29 am

Good morning from Vienna!
I was invited by "Jay123" to visit your site and am finally getting around to it after a hectic Christmas, plus trying to assist my old mother here in Austria (she had eye surgeries just before Christmas).
This site is an impressive project - good job!
My name is Dr. Karl Gross; I am a retired neurologist and have MS (since 1999). Some of you have already found some information about me on the web.
Disclosure: I get honoraria and travel expense re-imbursement from pharmaceutical companies when I get invited to give lectures and presentations about MS to physician and patient audiences, both in the U.S. and in Europe.
I am sure some will find this objectionable, to put it mildly. And if the site administrators, out of principle, have a problem with this, then just delete my entries, do let me know, and I will stay away from the site - your choice.
What I can assure you is that I am completely driven by scientific data, and not by any kind of marketing-hype - be it by "big pharma,"
"alternative medicine," or some other agenda. In fact, I think I am by now pretty good at spotting even subtle and "subliminal" attempts to pull the wool over people's eyes.
I felt it necessary to say all this by way of introduction, given the content of some of the posts that I already saw.

As to CCSVI:

It's an intriguing idea and most definitely needs to be throroughly investigated - no argument there at all. It's just a (very useful) habit amongst scientists and physicians to try to poke holes into new theories and explanations - to test them by fire, so to speak. It's not intended to demean or hurt anybody, nor is it an expression of narcissism - it's to help the truth come out! It's how science works: If your theory passes all those tests, then it actually will be refined by those very questions and will become even better established and, in medicine, can guide the development of better treatments. Or, if it doesn't hold up in this rigorous process of testing, it will become a footnote in the history of science, and will be forgotten. In a way, it's an evolutionary process.

In my view, there are lots of open questions about CCSVI. While the basic idea is attractive in many ways, there are also things we do not find although they should be there if the theory is correct (like the development of MS after blood clots in the venous systems draining the brain). In the absence of bigger and well-controlled studies (ideally, with a randomized, blinded "sham-treatment"-control group and large enough to allow significant differences to emerge based on what is known about the natural history of MS and the effects of current treatments), it is simply not possible to make a rational decision pro or con - especially in terms of large-scale recommendations.

I would encourage everybody to keep a cool head, but to stay well-informed!

Best regards,

Karl F. Gross, MD
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