cheer : low number of CCSVI diagnoses..... !!??

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

cheer : low number of CCSVI diagnoses..... !!??

Postby ozarkcanoer » Wed Jan 27, 2010 3:04 pm

Hi cheer,

A number of people, including False Creek, are reporting negative results on whatever CCSVI tests they are having, whether it is MRV or sonography. I am concerned that people (including myself) are going to a lot of effort and expense (both financial and emotional) just to be told that no CCSVI is detected. I am concerned that good interventional radiologists are finding negative results just because there is no "standard" procedure (yet) for detecting CCSVI. Of course the results from BNAC will be helpful, but are we encouraging people to be scanned by local doctors prematurely ??

Sorry for my concerns... you know I am positive about CCSVI, but it just hurts me when people report they have had negative doppler imaging or scans and these MIGHT be false negatives due to inexperience.

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Re: cheer : low number of CCSVI diagnoses..... !!??

Postby INONU » Wed Jan 27, 2010 4:06 pm

ozarkcanoer wrote:Hi cheer,

A number of people, including False Creek, are reporting negative results on whatever CCSVI tests they are having, whether it is MRV or sonography. I am concerned that people (including myself) are going to a lot of effort and expense (both financial and emotional) just to be told that no CCSVI is detected.
ozarkcanoer


ozark... I agree with you because if the radiologist don't know the special "protocol" of this special MRV , it is sure he is going to be wrong!!! I do the experience with my daughter's MRV
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Postby annad » Wed Jan 27, 2010 4:20 pm

I'm one of those with a negative MRV and it's hard to decide what to do next. I strongly believe in CCSVI and MS but I'm starting to think that unless doctors and radiologists know exactly what they are doing, it's a waste of my time and energy oh and yes, money. I don't want to wait however, until years go by and all the studies etc. have been completed.
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Postby cheerleader » Wed Jan 27, 2010 4:36 pm

If you go the doppler route, it must include transcranial doppler as well as neck, using Zamboni's protocol, which is very specific.

If you go the MRV route, it must be Dr. Haacke's protocol, as outlined clearly on his website. It is very specific.

If Jeff had just had a doppler, we would have left Stanford thinking he was fine. The only reason we knew he wasn't was because Dr. Dake did the MRV first...and we saw the blockage of his high jugular veins, above where the wand could reach. Blood was still flowing thru his neck, via the squirrely collateral veins (which were pushed to the limit, refluxing and too slow) so the doppler showed some flow, but it was NOT normal.

I really don't know what to say. If people have the time to wait for this to get figured out and perfected, then wait. If you are out of wait, take the protocols to interventional radiologists and neuroradiologists who treat stroke. False Creek diagnostic is run by an anesthesiologist. His heart is in the right place, but the diagnostics aren't there.

Too many people are not getting the tests done correctly. And that is disconcerting. I hope the conference in Hamilton deals with these issues, and an official protocol can be distributed to diagnostic centers.
cheer
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dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby annad » Wed Jan 27, 2010 4:45 pm

I'm definitely out of wait. . . guess we are just saying that we have to trust those that we go to for testing whether they follow protocol or not. They can tell us, yes, we'll do that but I don't really know if they are following it correctly.
Forward with the search :)
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Postby ozarkcanoer » Wed Jan 27, 2010 4:48 pm

cheer,

I want you to know that I have a lot of faith in CCSVI. I don't mean to distress you but I keep seeing people post their negative results including the doctor from False Creek.

I will make sure that I tell my neuroradiologist to use Dr Haacke's protocol and not Dr Dake's (I was sent a copy of the protocol that Dr Dake is currently using). I guess we are still pioneers. It may just be lucky for me that I am seeing my doctor on Feb 8th, one day after the McMaster conference.

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Postby cheerleader » Wed Jan 27, 2010 4:57 pm

ozarkcanoer wrote:cheer,

I want you to know that I have a lot of faith in CCSVI. I don't mean to distress you but I keep seeing people post their negative results including the doctor from False Creek.
ozarkcanoer


OC...no worries. This is not about faith, and I'm not distressed. (and even if I were, it doesn't matter.) Just trying to be clear. I feel badly for people who are spending their own money and not getting answers. Jeff's tests were thorough, done by the best doc and radiology team in the US, and mostly covered by his insurance. The Canadian folks are in a tough situation, as are the people in the UK (where the MS Society won't even investigate) and Germany (same thing) and France, etc....This whole experience has made me appreciate our health care system (and that is incredibly ironic.)
I'm sure your test will be done correctly...and let us know how it goes.
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dx dual jugular vein stenosis (CCSVI) 4/09
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Postby berriesarenice » Wed Jan 27, 2010 5:04 pm

I hope I'm not stepping on toes, but I have always found Cheer to be very clear that the correct protocol is essential when diagnosing CCSVI. While she has encouraged people to find local experts, there has always been an emphasis on providing them with the proper testing procedures.

Here is a link to her facebook page where she has put everything together to bring to your local guy.

http://www.facebook.com/notes/ccsvi-in-multiple-sclerosis/what-are-the-tests-for-ccsvi/225095842210

No earthly idea if I linked that correctly... :oops:
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Postby ozarkcanoer » Wed Jan 27, 2010 5:13 pm

berries,

No toes are hurt here !!!! Cheer is doing an excellent job. I just got a little stressed out when I saw several posts from people with negative CCSVI tests. I have to keep telling myself over and over again :Buffalo, Buffalo, Buffalo, LOLOLOL. And I guess we also need to comfort those who do report negative tests... it must be shattering after having so much hope.

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Postby markus77 » Wed Jan 27, 2010 5:14 pm

Yesterday at 10:47am
Received an e-mail from Dr. Zamboni this morning-

A Consensus Conference on Venous Malformations - headed by Prof. Byung B Lee from Georgetown - and experts from 47 countries- studied the evidence and unanimously voted in favour of officially including the stenosing lesions found in CCSVI in the new Consensus document and Guidelines. Now published-

<shortened url>

http://www.minervamedica.it/en/journals ... 09N06A0434

This paper can be brought/linked to interventional radiologists and vascular surgeons. CCSVI lesions are classified as a truncular venous malformations - which means that vascular doctors have now classified this disease, CCSVI, as congenital- and preceding MS lesions.

Vascular doctors have agreed. CCSVI comes first.

Dr. Zamboni has been speaking to medical panels around the world. Yesterday was a "4 hour machine gunning of questions" by the Italian, Canadian and US MS Societies in Milan- Dr. Zamboni said he was able to answer all the questions with scientific evidence, and was quite pleased with the meeting's outcome. He'll be in North American soon.

this is basically saying that if you have ms you have CCSVI so somebody made a mistake somewhere in reading the results.....
STAY REAL MY FRIENDS

dx 1989, spms
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Postby nicko » Wed Jan 27, 2010 6:19 pm

At first I thought the Dr's were up to something when they told us to wait it out. But now I can see why, alot of these places have no clue what they are doing. A negative diagnosis with CCSVI can be a horrible thing to take. Either go into a scan expecting a negative diagnosis and hoping for a positive or don't go at all.

Just my opinion :P
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Postby NotSoSick » Wed Jan 27, 2010 6:22 pm

"It was Johnny Campbell, a first-year medical student, who led the initial organized cheer at a game in 1898..." "One of the university's professors took this statement one step further and declared that the collective stimuli of hundreds of students, focused on sending positive energy, would turn the tide of their losing streak."

Thank you, Cheer. Seriously.
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Postby ElMarino » Wed Jan 27, 2010 7:53 pm

They can't find anything? I thought that these restrictions in the veins are supposed to be really pronounced, or perhaps I'm wrong.

I'll be stoned as a heretic, people have got fanatical about CCSVI, but perhaps there is simply nothing to find in these cases?

PS, actually, I'm probably wrong and no one will give two hoots about what I think but, for the record, I'm not convinced by CCSVI but I have an open mind and I'm awaiting the Buffalo results with interest..
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Postby cah » Wed Jan 27, 2010 8:07 pm

They aren't pronounced at all. Sometimes they're really hard to find. The veinous system of the head and neck is really complicated (look at all those pictures in different threads here), and unless you

1. don't have exactly the right equipment which is well configured/adjusted

2. don't know exactly what to look for

3. don't know exactly the difference between normal and abnormal

it' like looking on a dish of macaroni, trying to find out wether there's a spaghetti in it or not...
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Postby ElMarino » Wed Jan 27, 2010 8:23 pm

Fair enough. I stand corrected. Let's hope that the Buffalo study bears this out.. It's just that I thought a trained radiologist would be able to find a blocked vein. I'm sure I'd find a thread of spaghetti in a dish of macaroni though. Even without training.
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