Charité Berlin trial preliminary results?

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

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Postby berriesarenice » Sat Jan 30, 2010 8:27 pm

mohzi wrote: In December I had a lengthy conversation with a top MS Specialist. In fact, he was heavily involved in the Bologne Conference.

In December he told me their were two deaths so far. I corrected him and said, there were none. A lady died in Phoenix after stents, but the Drs. said it was not related. And one person had a problem with a stent slipping that required open heart surgery.

He replied and was very serious, "There were two deaths, I talk to a lot of people all over the world involved." His whole take on CCSVI, was that a lot more testing needs to be done...


This is interesting to me b/c I spoke to one of my neuros last week and he was quite dismissive of CCSVI (as expected), but also threw out the "2 death" figure. He wasn't plugged in w/ the worldwide CCSVI movement, but seemed to have been in the loop w/ Stanford neuros. It seemed to be the number being thrown around. I'm curious how wide-spread that rumor is.

Also, I know stented veins aren't common, but they've been done. Isn't there a mortality rate out there already, or something close? Does anyone know?

Also, far from wanting testing, my guy expressed anger and frustration that money was being wasted on trials for CCSVI. Oh dear.
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Hmmmm....

Postby fiddler » Sat Jan 30, 2010 8:40 pm

We're depending a lot on the Buffalo study... just to assuage my paranoia, can someone tell me what the hypotheses/methods/protocols for the Buffalo study are? I have seen statistics and half-truths used to make pseudo-scientific arguments in the past, and would hate to think that the research results would be used to answer questions that had never been asked. The media is easily led astray by half-truth statements, as has been noted on several postings in this forum.

...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Postby foreignlesion » Sat Jan 30, 2010 8:46 pm

Fiddler,

Use this link:

http://www.bnac.net/?page_id=517
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Postby bestadmom » Sat Jan 30, 2010 8:54 pm

I was in the Buffalo study. I first met with Dr. Weinstock-Guttman for 1 1/2 hours for a basic neuro exam. I then had a 1+ hour questionnaire asked aloud by a research aide. Next was the transcranial doppler and blood tests for about 45 mins, and then the mri/mrv for 2 1/2 hours.

I was told one person was reading the mri/mrv data so there is consistency. This is why the study has taken around 8 months so far. The study is single blind - the researchers don't know who has ms.

Results are expected to be announced the week of Feb.7th. I expect them to confim Zamboni's findings and I am excited to see the % correllation.
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Thanks, but...

Postby fiddler » Sat Jan 30, 2010 9:10 pm

Foreignlesion, that is helpful, but it's meant for subjects of the study and doesn't tell me what I would like to know about the scientific approach.

Bestadmom, just remember that consistency isn't good if the analyst is consistently bad. We know of people on TiMS who have had a negative CCSVI diagnosis only to have that overturned by someone else who is more familiar with what to look for. However, I seem to remember reading in one thread or another that the analysts at BNAC were trained by Zamboni's team as to what they should be looking for, is that right?

Hmmmm... now if I was a skeptic I would say "Wait a minute, Zamboni trained the people who are verifying his theory?"... Maybe someone can tell me (and all the other readers) why we don't need to worry about what that skeptic has to say...
...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Postby bestadmom » Sat Jan 30, 2010 9:33 pm

Ted,

I can't tell you what Buffalo saw on my disk, but I can tell you I saw the stenosis and then sent it on to a radiologist friend who said it was stunning and severe.

The Buffalo doppler operator spent 3 weeks in Italy w/Zamboni learning how to use it. Reading The mri/mrv is not so out of the ordinary, but the images weren't fantastic either. My radiologist wouldn't use it as a sole diagnostic tool, and no one should. He said there is a lot of artifacting.

As far as making the same mistake 500 times in a row, it would be pretty sad and unscientific for Buffalo to make a mistake like that. You should give them more credit. Results are validated by an outside professional and no one is working in a vacuum. Their reputations are at stake.
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Postby sbr487 » Sat Jan 30, 2010 11:25 pm

Did you say neuro? Remember a team from Germany dubbed Dr. Z's work as value less. Who know the research might be undertaken to disprove CCSVI. With right amount of bias in diagnosis, this would not be difficult. We have already seen even genuine doctors handing out false -ve.
I think next couple of years would be very interesting and I would like to see masks come off of ...
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Postby PCakes » Sat Jan 30, 2010 11:29 pm

... from this day forward I will present myself as a person living with CCSVI. MS will be abandonded as the title and moved into the list of symptoms. One step at a time... they will listen...:)
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Postby sbr487 » Sat Jan 30, 2010 11:41 pm

I agree the whole MS landscape has to be re drawn. Someone has CCSVI and he has varying degree of symptoms and nothing in between (like RRMS etc.). CCSVI is the cause and sclerosis is the effect ....
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Postby robin50 » Sun Jan 31, 2010 12:56 am

as i know, yannis

they did only mri testing, at charite in berlin....but at univ. jena and at frankfurt uni, they are also testing...but as i heard, on zambonis protocol...

will see, which results will come out buffalo study soon!?

Robin
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Postby LR1234 » Sun Jan 31, 2010 1:01 am

Please can someone verify the 2 death figure, my neuro keeps throwing that at me too. I know Holly/Peekaboo sadly passed away. (Even though we were told it ws not related, i can see how the procedure may have contributed so If my neuro said one death I would understand).
Radeck had a migrating stent and his def not dead.
Could someone please verify the second death? I just want to get to the bottom of rumour or fact.
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Postby muse » Sun Jan 31, 2010 1:56 am

robin50 wrote:as i know, yannis they did only mri testing, at charite in berlin....but at univ. jena and at frankfurt uni, they are also testing...but as i heard, on zambonis protocol...Robin


Hi Robin,
at the Charité in Berlin the neurologists (Prof. L. Harms et al) are “trying” to do a doppler sonography (not a MRI) and they are ignoring the protocols by Prof Zamboni et al completely. They are not “able” to find any stenosis or other malfunctions of the veins ( ZEIT article ) but they are not to shy to fall about laughing Prof Zamboni et al in public loud! :x :x :x
On the other hand there are the Universities of Jena & Frankfurt which did/does the examination with the protocol by Prof. M. Haacke/Prof P. Zamboni and they have a lot more success (you can meet the most of the people who are dx with CCSVI in MS in Germany at our forum) .
SURPRISE, SURPRISE and none of those two Universities had to go at first to the print media because at first they had to do a proper job as physicians & scientists!
Best
Arne as mad as hell
http://www.csvi-ms.net/en
Last edited by muse on Sun Jan 31, 2010 2:19 am, edited 1 time in total.
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Postby robin50 » Sun Jan 31, 2010 2:18 am

it s realy funny, muse

to talk with a nativ german, living in new zealand in an american board...ha

as a now at edss 8 stable pp-ms er since several years, I can wait a bit, for better and hopefully clear results out of the buffalo researches

and, as you mentioned, muse, other clinical trials are also still running in germany...so....don t worry...

Robin
(still 60 !!! years old...no, young guy , ms since 1985, strict pp) :P
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Postby muse » Sun Jan 31, 2010 2:32 am

robin50 wrote:....as a now at edss 8 stable pp-ms er since several years, I can wait a bit, for better and hopefully clear results out of the buffalo researches
and, as you mentioned, muse, other clinical trials are also still running in germany...so....don t worry...:P


People are different Robin. Because of that image I don't have to waste time any more - that's for sure!!!
Arne as mad as hell
Image
dx MS 1997, dx CCSVI in MS 2009
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Postby Ana » Sun Jan 31, 2010 6:22 am

Hi,

as muse already told you the guys at the Charité are just doing doppler scans without using Prof. Zambonis protocol or contacting him or Dr. Simka before. That's why none of us in our German forum went there when they recruited people via the Internet. But unfortunately others who might be desperate (as it is hard to get the tests, especially if you don't have money) joined.

Dr. Simka keeps on emphasizing that the results of the doppler scan depend a lot on the person examining. It is just like doing classical navigation on a ship: a lot of persons including even me know how to handle a sextant but only an able experienced sailor will get the right results. I could try to "shoot the sun" by a sextant but you'd better not bet that my figures were right and that I'd reach my destination without GPS.

I know that the Frankfurt doctors who do the tests after the protocols of Prof Zamboni and Prof. Haacke have already found stenosis concerning several patients. I know some of the patients and they also told me about it when I was there.

So it is hard to believe that the Charité claims that they found not a single stenosis.

Ana
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