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

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

Postby cah » Wed Jan 27, 2010 8:47 pm

ElMarino wrote:I'm sure I'd find a thread of spaghetti in a dish of macaroni though. Even without training.

Ok, perhaps this analogy works better if you'd say you have to tell which ones are macaroni and which are spaghetti, with all you know is that those are noodles and no one ever told you the difference... :lol:
"There is only one good, knowledge, and one evil, ignorance." Socrates
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Postby mangio » Wed Jan 27, 2010 11:45 pm

After reading some posts yesterday I became quite worried about
some of the findings being reported. I wonder if the people being
tested at various locations are of such different backgrounds that
this could be altering some of the results? Just thinking aloud...txs
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Postby weegie1 » Thu Jan 28, 2010 12:59 am

cah said

it' like looking on a dish of macaroni, trying to find out wether there's a spaghetti in it or not...[/quote]

maybe that's why it was an Italian who came up with CCSVI
Last edited by weegie1 on Thu Jan 28, 2010 1:40 am, edited 1 time in total.
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Postby happy_canuck » Thu Jan 28, 2010 1:28 am

I am convinced we will get this testing on track and widely available in Canada before too long.

I am not surprised, at all, that it took False Creek more than a few false (would be funny if no money had been spent) starts to get this right. Zamboni said it would take 100 scans to follow the protocol correctly. The head False Creek doctor (who does not read the scans) now reports the clinic is finding stenosis in 6 of 45 scans, with another 15/45 scans labeled abnormal. The "actual" number is unknown at this point in the general population because we need more scans, and lots of them. So Buffalo will come in with another number and we will have a closer idea of the prevalence of CCSVI.

Far from being disheartened by this, I am optimistic. I believe Canada's health care system (province by province) will make testing available to everyone this year, not just those who can pay a private clinic. Those who went to False Creek have established there is a problem and doctors are getting on board.

A friend of a friend who works for a Vancouver Island hospital was given an MRV by a radiologist when the machine was idle last December because they were curious about CCSVI. Her veins were like plates of spaghetti. The doctor said she would need jugular vein replacement, in his opinion, and that he had never seen anything like it. So some CCSVI problems are going to be more obvious than others.
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Postby lionheart » Thu Jan 28, 2010 2:15 am

Hi! I don't want to sound pessimistic or anth, but would second Lmarino's opinion...
The problem is that nth's been proven yet, and years would pass before it is.

I truly admire Cheer for her enthusiasm, her dedication, for sharing and evth she's been doing for her husband and for us!!!

But as far as I am aware, even with Dr Zamboni, not all patients had this venous problem. And he's supposed to have used the right protocol.

And my question would be - if 9 out of 10 patients have it, what about the 10th?

Tens of new things and possible treatments come up every month, but I believe that this new discovery in particular has overwhelmed us that much because it is the first regarding MS as non-autoimmune desease. Not that the idea is new, no, just for the first time there is smth 'palpable' about the theory. And we, being tired of all immunomodulating, -supressing etc 'discoveries', now are truly swept and want this to be the thing!!!

I also do!!! Don't misunderstand. Just the procedure apart from being costly to an extent, is also invasive..I would need some proof..and years would pass before clinical tests are run and kind of proof turns up. I don't know... I certainly don't have the whole information, don't mean to sound discouraging...Perhaps am looking for s.o./sth to convince me..
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Postby Algis » Thu Jan 28, 2010 2:32 am

Pray to be in the first nine diagnosed :P

For the tenth: what I would ask if it is me: to have a scan for iron deposits in my brain or spinal cord. From there and according to the theory I would try to circumvent which vein could supply this overload of iron. From there a specialist could probably lead me to viable solutions. Meanwhile I bleed myself few times a month (if it help) and will see a toxicologist.

And I am convinced that there is already a 'plan' for those who have no obvious venous problem.

My tuppence tho :)

Be well!
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Postby CureOrBust » Thu Jan 28, 2010 3:27 am

cheerleader wrote:If you go the doppler route, it must include transcranial doppler as well as neck, using Zamboni's protocol, which 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.
If memory serves me right, they were NOT doing the "Zamboni protocol" at Stanford; they had not been trained / validated as doing it correctly?

My simple understanding of the Zamboni protocol, is that it looks for flow abnormalities, not just "stenosis" and is used to warrant the next step (ie venography etc)
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Postby CureOrBust » Thu Jan 28, 2010 3:30 am

lionheart wrote:But as far as I am aware, even with Dr Zamboni, not all patients had this venous problem. And he's supposed to have used the right protocol.

And my question would be - if 9 out of 10 patients have it, what about the 10th?
I may be a "10th", but I will be tested as soon as I can, and if its false, I will get tested again. What are my other options? Rebif didn't work.
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Postby Loobie » Thu Jan 28, 2010 4:59 am

It is a very, very specific protocol even on MRV. The first time I went they had to put a pulse meter on my finger as Dake's protocol was having to take out the interference seen in imaging during a heartbeat. Believe me, it does take specific know how.
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Postby lionheart » Thu Jan 28, 2010 5:12 am

But doesn't the lack of this find in ALL ms patients, lead you to doubt it...

Maybe some of the members here who are better acquainted or have undergone the procedure or have just talked to those drs may answer - why doesn't the venous problem go for ALL?

What about those who don't have it? Don't they still have MS? Are they misdiagnozed or what?
And here the point, in my opinion, is not to keep fingers crossed to be one of the first nine, but whether this is it??!!

The recent statement was that the problem is congenital, right? If it is, ALL should have it, i.e. be born like this, hence MS. If they don't, then, either it's not congenital, and develops as a result of MS, or just CCSVI is not the source, just a random coincidence...
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100%? Not likely

Postby fiddler » Thu Jan 28, 2010 7:01 am

There are many reasons why people who are diagnosed with MS might not be found to have CCSVI

1) MS is a complex disease, extremely variable in the way it first presents itself and the way that it progresses. My impression is that it is almost more a syndrome than a disease in the way it is diagnosed. Some people may be diagnosed with MS, but have something that acts similar to CCSVI-caused MS, but in the future will be called something else.

2) Even if it is "real" MS (whatever that is), there can be other reasons for iron deposition and then auto-immune reaction other than CCSVI.

3) Even if MS was "always" caused by CCSVI (and I doubt it), we don't know what the threshold is for % blockage that might cause MS: the blockage that can cause MS in susceptible people might be so low as to make CCSVI undetectable.

I have to say that when I first heard (misheard?) that 100% of MSers had CCSVI and 100% of non-MSers did NOT have CCSVI, my first reaction was that the whole thing was a hoax. Given the subjectiveness of the diagnosis and the subjectiveness inherent in detecting CCSVI and the strong possibility that there may be more than one cause of MS, I find it comforting to know that not all MSers (or those diagnosed with MS) are found to have CCSVI. I mean I am very much hoping that my MS is caused by a form of CCSVI that is fixable, but knowing that this is not supposed to be a 100% correlation means that it is more likely to be a REAL cause of many forms of MS.

If a research paper said that all people diagnosed with MS always had CCSVI, that would lead me to doubt it.

Oh, and one more thing: when I heard (misheard?) that all non-MSers did NOT have CCSVI, this caused me to doubt the findings: after all, people could have blockage that doesn't result in MS or hasn't resulted in MS yet.

Dx SPMS in 2004.  Liberated 29/04/2010.
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Postby Zeureka » Thu Jan 28, 2010 7:14 am

ElMarino wrote: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.

Hmmm, I guess if you were colour-blind you would not on your logo :lol: :lol: :lol:
I can only report of my past experience. Neurologist: "Your symptoms cannot point to an MS diagnosis, since your MRI brain scan does not show much..." I had all the lesions in the spinal for me everything is possible...
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Postby ozarkcanoer » Thu Jan 28, 2010 7:27 am

Well, the "CCSVI in Greece" thread just perked up my spirits. "sou" had positive CCSVI diagnosis and treatment in Greece!!! It is nice that the positives from individual endeavors keep coming in also. So maybe all the people who have had negative CCSVI diagnosis will eventually be diagnosed with better imaging protocols !!! Really... I am manic-depressive about this, LOLOL.

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Postby AJWANTSACURE » Thu Jan 28, 2010 7:31 am

found this from Wikipedia - might be helpful:

Venography (also called phlebography) is a procedure in which an x-ray of the veins, a venogram, is taken after a special dye is injected into the bone marrow or veins. It is the Gold standard for diagnosing acute deep venous thrombosis and chronic cerebrospinal venous insufficiency although its use has been largely supplanted by the less invasive duplex ultrasonography.

Venography can also be used to distinguish blood clots from obstructions in the veins, to evaluate congenital vein problems

i made a post a little while back about venography and ct-scan, check them out.
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Re: 100%? Not likely

Postby Lyon » Thu Jan 28, 2010 7:35 am

Last edited by Lyon on Mon Nov 21, 2011 8:46 pm, edited 1 time in total.
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