Buffalo Study

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

Postby LR1234 » Thu Feb 11, 2010 12:01 am

I think there will be vein issues in the lower back found.

I know of one person wh had a tumour like growth in the bottom of her back who was diagnosed with MS.
Once that tumour was removed 13 years later the "MS" stopped progressing.
My point being maybe in the spine issues with discs and tumours and blocked vessels will be found. (Some MS patients seem to develop issues after an accident of some sort)

Also that thing about Dake's treatment and Zamboni's treatment is still bugging me. Dr Dake seems to be finding issues higher up in the veins C1/C2 and Zamboni would not have made this part of his protocol as he is mainly looking for lower stenosis. For this reason I am interested to see Dr Dake's clinical trial results. Maybe he will have a higher difference between controls and MS patients and maybe more MS patients will be diagnosed with CCSVI as a consequence with higher stenosis in the jugulars.
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Postby Billmeik » Thu Feb 11, 2010 1:14 am

Exactly. My understanding is that the rate of MS in the population is well below 1%, in fact closer to 0.1%, so that still leaves more than 25% unexplained CCSVI.


My understanding is that 1 in 1000 people have ms, while 50 in 1000 (5%) have lesions. So 98% of people with lesions DONT have MS. When I threw this number at my neuro he said 'if the patients are over 50 years old its more that 5%"


That doesnt explain the other 20+ percent. Unless the controls were all over 50..

On another topic, the correlation they found between MS progression and ccsvi. It seems that most people interpret this as meaning 'the ccsvi progresses too'

What if it means 'we can tell just how bad your MS will be when you're first diagnosed with MS by looking at your ccsvi. If the blockage is bad you'll be spms or progressive. This would be if the ccsvi doesnt change once you're born with it.
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Postby costumenastional » Thu Feb 11, 2010 1:25 am

Reading about the CIS issue in the Buffalo study i have to ask:

If CIS has a lower relation with the CCSVI and higher with the CDMS doesn't this mean that ms causes ccsvi? Something very unlikely according to the logic i got left but then again who am i to tell?

Another interprentation could be that in the early stages of MS the ccsvi is not easily detectable by the methods they are currently using, but as the veins stenosis is getting worst for whatever reason so does the MS.

That would rule out the congenital factor of course and it is well known that they have already found patients missing veins,or veins pinched by bones, pathologies that cannot just happen but most certainly exist since birth.
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Postby Zeureka » Thu Feb 11, 2010 2:29 am

Researcher 'cautiously optimistic' about early results of MS study
(CP) – 9 hours ago
http://www.google.com/hostednews/canadi ... lWEAgfVkvw

I would agree with these statements - I think it might very likely be a combination of factors leading to MS symptoms (vein + neurologic + genetics/environmental):

"But I don't think anybody's claiming that CCSVI is the cause of MS," he said from Hamilton. "I think there's going to be more than just that. ... I think autoimmune components and CCSVI and probably some things we haven't yet discovered may all be part and parcel of the etiology of the disease."
..."If Zamboni's right - and that's what we're all trying to prove - then some people may very well benefit from having his surgical intervention," he said. "I don't think it will be every MS patient," but even if a quarter of people with a certain category of disease could be helped, "that's still an unbelievable opportunity."
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Postby jimmylegs » Thu Feb 11, 2010 5:20 am

56% Correlation
tonyfonda
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Alright, the Buffalo results are out.

56% correlation is far from the 100% claimed by Zamboni.

I am trying to stipulate what this could mean:

(i) There is no causality effect between vein narrowing and MS. Narrowing occurs as a symptom of the disease (like itching, blindness and else) for half of the patients.

(ii) OR, CCSVI is a factor leading to MS. The fact that only 50% have it coincides with the statistic that 50% go into Phase 2 (Secondary progressive), while the rest are stabilizing as the veins open after a while. So the one who still have narrowing (say after 10-15 years from disease discovery) are on a bad course.

Any thoughts?

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Postby jimmylegs » Thu Feb 11, 2010 5:28 am

kc
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Posted: Wed Feb 10, 2010 10:05 am Post subject: Only 55% for buffalo study?

I thought that Zamboni got close to 100% of people with ms who had stenosed veins.

While I realize that this is satistically significant I am disapointed.

kc

happy_canuck
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Posted: Wed Feb 10, 2010 10:07 am

kc,

Those are Buffalo's results (UB not UBC). Confusing...

The press release for Buffalo is here:

http://www.buffalo.edu/news/10937

zap
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Posted: Wed Feb 10, 2010 10:16 am
Personally, I suspect we will find that there are many ways that reflux can occur - not all will be static, constant, obvious - some may depend on posture, transient changes in blood pressure, vasodilation, etc ... the first things discovered will be the obvious cases - missing veins, total obstructions, etc, but I am pretty sure we will see more subtle mechanisms of damage as well, in time ...

Algis
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Posted: Wed Feb 10, 2010 10:16 am Post subject:

It is only after CTEVD and it started in April; probably when CCSVI was nothing more than a rumor. Further 10% are on the limit...

So wait for MRI/MRV and more analysis. It still a more than half of MS peeps A pretty good average...

sbr487
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Posted: Wed Feb 10, 2010 10:17 am
Quote:
I thought that Zamboni got close to 100% of people with ms who had stenosed veins.
While I realize that this is satistically significant I am disapointed.

This is true. But when compared to the fact that:
1) not every MS person has same symptom
2) not every person's LP is +ve
3) etc etc

Yet these people go through the same treatment routine. So when compared to that, the above study is better. It shows a clear pattern.
The other thing is that the study might not be completely accurate or efficient. So there is always a room for improvement.
I hope in next few weeks, Dr. Z gets a chance to see why the numbers are low?

kc
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Posted: Wed Feb 10, 2010 10:29 am
Ok guys Thanks I feel better about this now. I was just shocked as I expected much higher %s.

I just posted a topic regarding getting this out to local news media. The more coverage the better.

Sorry for being a wet blanket. Lets fight now for ccsvi.

kc

cheerleader
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Posted: Wed Feb 10, 2010 10:30 am

Dr. Zamboni did not include CIS- clinically isolated patients. He only used CDMS- clinically defined MS patients. Buffalo used CIS and children. These are prelim numbers, showing a strong association in a large group, but not as high as Dr. Z's. smaller, more CDMS group. Even without 100%, Dr. Zivadinov is encouraging more testing, research and even possible treatment....so there's something strong enough for Buffalo to recommend more. Not the 95% association that Dr. Haacke's cohorts were showing with MRV in Hamilton, and not as high as expected, but the research continues.
cheer
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dx dual jugular vein stenosis (CCSVI) 4/09
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CCSVI in MS

zap
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Posted: Wed Feb 10, 2010 10:32 am Post subject:

Also, gotta say - while I, too, am a bit disappointed in the numbers, they are still vastly more promising than ANY of the numbers I've seen come from the CRABs treatments!

costumenastional
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Posted: Wed Feb 10, 2010 10:32 am

55% doesnt sound like 95% at all...
also, this article is totally a downer comparing with the news letter Zivadinov published just a few days ago.
i am dissapointed.

sonia52
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Posted: Wed Feb 10, 2010 10:33 am
What about the 22 % - 25 % of healthy controls diagnosed with CCSVI because they met two criteria??? They'll have MS in a couple of years??? Or we can have CCSVI without having MS? It would be interesting to know why...

LR1234
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Posted: Wed Feb 10, 2010 10:36 am

25% of controls had issues too. I am also dissapointed with the findings. i was also hoping for more obvious differences between controls and MS patients. Oh well, lets hope that more research shows more differences between controls and MS patients...maybe other veins are affected that have not yet been tested.

Algis
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Posted: Wed Feb 10, 2010 10:36 am Post subject:

Azygous vein wasn't checked either

costumenastional
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Posted: Wed Feb 10, 2010 10:37 am
I was really waiting for Buffalo to make CCSVI a sure thing. Now, with a 55 percentage i am afraid of negative critics more than ever...

kc
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Posted: Wed Feb 10, 2010 10:37 am Post subject:

Cheer leader,

Thank you for clarifying this. My adrenaline is pumping so hard right now (probably thru a stenosed jugular) that I just saw the numbers and did not fully absorb all of the lingo.

Once again cheers to cheerleader.

kc

costumenastional
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Posted: Wed Feb 10, 2010 10:47 am

We should also note that a little less than half of patients DIN NOT have stenosis!!!!!!!

This is BAD news whatsoever. It clearly means that these people are not sick because of vascular problems.

One more time, this is not what i expected after i read the news letter the other time. And i know this goes for all of us.

As far as the CIS or definite MS thing, i dont see why it is important at all.
We all know very well what CIS means. That it wont stay like that for ever.
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Postby jimmylegs » Thu Feb 11, 2010 5:39 am

LR1234
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Posted: Wed Feb 10, 2010 10:48 am

I would like to know the exact number of healthy controls...does it say it and I just missed it?
That means that almost half of MS patients don't have CCSVI??? Is that correct??
If so us MSers who do have stenosis and get them fixed will still have MS and be in line with the MSers that didn't have stenosis.

Do we know if the MSers without stenosis are less affected?

It kind of suggests that CCSVI is not the cause of MS.

cheerleader
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Posted: Wed Feb 10, 2010 10:50 am

Let's not get too upset...(cortisol is no good!)
again, CIS and children included in MS numbers vs. Zamboni's only CDMS
The 10% of those with MS and some indication of CCSVI were put in the "normal" column. Buffalo did follow Zamboni's protocol of 2 out of 5 on doppler, so the azygos argument can't be used...Zamboni used flow as indicated on doppler, not MRV, and he had 100% correlation. It will be interesting to hear his comments...I do know that Buffalo started testing in April '09, and Erica came out from Italy to help them with doppler technique last fall...but that can't be considered in the scientific results.

Preliminary results. Not as conclusive as we might have hoped...but these results were exciting enough for Buffalo to begin offering testing and a trial on angioplasty, so the docs see enough there to continue pursuing the connection.
cheer
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dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

eve
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Posted: Wed Feb 10, 2010 10:51 am

What I would like to know is whether the controls who also had stenosis, have iron on the brain?
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EnjoyingTheRide
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Posted: Wed Feb 10, 2010 11:04 am

Algis wrote:
Azygous vein wasn't checked either

How do you know this? Could be significant.

cheerleader
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Posted: Wed Feb 10, 2010 11:09 am

EnjoyingTheRide wrote:
Algis wrote:
Azygous vein wasn't checked either

How do you know this? Could be significant.

No....this is wrong. Dr. Zamboni used doppler (just as Buffalo did) to check for venous return affecting the azygos vein. It WAS checked- via Zamboni's doppler parameters.
cheer
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dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

msgigiski
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Posted: Wed Feb 10, 2010 11:21 am

This study is important. Not only does it show correlation, but is also does not overwhemely show correlation, a 1 to 1 relationship. or does it? There are many more questions that need to be asked. 1. A study of MS patients with diffferent types of MS what would that result be. 2. A study of the various stenosis types in relation to disability. 3. A long term study of the normal controls with CCSVI. 4. What type of iron deposits are found in the brain of those with mild RRMS, but CCSVI and normal controls also with CCSVI. I could probably go on and on. This is important and needs researchers asking relavant questions. Just because you asked a right question and came up with less than an overwhelmingly positive response does not mean a theory is not valid.

Algis
Family Elder
Posted: Wed Feb 10, 2010 11:24 am

Pardon me Cheer; perhaps my understanding of the English language isn't good enough; but I read:

All participants in the first phase underwent ultrasound (Doppler) scans of the head and neck in different body postures to view the direction of venous blood flow. MS subjects also underwent MRI scans of the brain to measure iron deposits in lesions and surrounding areas of the brain, using a method called susceptibility-weighted imaging. Iron findings on these images will be related to subjects' disability and neuropsychological symptoms.

Azygous is going down to the diaphragm; or maybe I miss something?

To be clarified anyway; sorry if I mis-interpret...

thisisalex
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Posted: Wed Feb 10, 2010 11:31 am

JoyIsMyStrength
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Posted: Wed Feb 10, 2010 11:31 am

Quote:
Just because you asked a right question and came up with less than an overwhelmingly positive response does not mean a theory is not valid.

Good point. Also:

Quote:
In this large MS cohort, the presence of CCSVI did suggest an association with disease progression, a finding that was not shown in Zamboni’s smaller cohort, Zivadinov notes.

The finding that 22.4 percent of healthy controls also met two CCSVI criteria requires continuing investigation, he says.


This is quite interesting. I wonder what the future holds for these healthy controls. Not that I wish bad things for them of course.

I admit to being disappointed as well but I think it's because of all the build-up, the hints coming out of the Buffalo newsletter that made me imagine something more extradorinary. That is my fault, not theirs. But perspective is a wonderful thing and this study is a gift. Let's embrace what we can learn from it and be glad we have this interest on our side. We all want the truth.

Pam

thisisalex
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Posted: Wed Feb 10, 2010 11:39 am

please dont forget that those 5 criterias in Zamboni's original paper was set for a really small group of MSers. which means maybe these 5 criterias are only valid for italian MSers (sounds stupid, but do you get what i mean?)

maybe there are other criterias which are true for everyone on Earth... or maybe there are different criterias for RRMSers, for children, for males, for blondes, for caucasians, for... who knows?

these criterias need to be find

that is why this buffalo result is good for: to continue the research.

LR1234
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Posted: Wed Feb 10, 2010 11:40 am

I have one thought for myself which is a bit selfish so forgive me.
Maybe There are 2 diseases: MS and CCSVI.
For those who have tested positive for CCSVI is there a chance that sorting our stenosis might actually be at the root of our health problems?

Those other 45% without stenosis maybe there MS is caused by something else. This would explain why treatments have such variable results for MS patients, maybe there are different types of MS??

costumenastional
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Posted: Wed Feb 10, 2010 11:44 am

I am sorry i came up so strong on this... It s just that i was waiting for way more encouraging results. And i really dont think that they dont know what they are doing in Buffalo. I am sure their results have a very strong basis.

The problem here is reading in the news letter Zivadinov saying:

We understand that everyone
with MS hopes for a cure right
now.We ask for your patience a
little longer to give us time to
complete this scientifically valid study.

I took it as "we see what Zamboni saw". It wont take decades...
And yes, it's their fault not ours. I think of people in here more than intelligent myself included.

It's all about patience once again...
Of course, when thinking it over, it s good news. 55% HAVE IT. 10% maybe have it. There is strong relation and my guess is that when they release the full paper they will explain even more. There is a reason they are taking it further after all.. THE KEY POINT is that about 40% have not been found to have ccsvi. Why?

Sou had only indications from a doppler for left jugular stenosis and that was it. When he had the DSA phlebography they found 3 vein problems (in the azygos as well). So, who knows. Maybe it's all about official data waiting to be unfolded in a better direction.

Zamboni's view would be more than needed also asap.

Back to wondering...
I just needed to hear 90%. It's a drowback whatsoever, and all we got left with for now is hope. Let's wait...again.

christophelux
Newbie
Posted: Wed Feb 10, 2010 11:49 am Post subject: let summarise

If we analyse correctly and exclude border line cases (10 % of people) we have 62,5 % MS / 25,9 % healthy. That simply shows a strong correlation (2,5 X more times in MS patients than healthy).

And quote that there is a correlation in MS population between CCSVI presence and severity of the disease could mean that the MS beginners RRMS do not yet show CCSVI as often as more " advanced" people.

Moreover, if I understand correctly only doppler results are included not MRV (contrary to Zamboni study which was based on Doppler and MRV). So maybe percentage will go up with CCSVI cases detected only with MRV not doppler.

Cheerleader or others, could you confirm last point?

BBE
Family Member
Posted: Wed Feb 10, 2010 11:52 am

If the positive 22 % - 25 % healthy controls should develop MS in the future than one quarter of people on earth will have MS or maybe other disease? I don`t think so.

The azygous vein test was probably included in those 5 criteria. E.g.: If there is a stenosis in azygous vein, than there would be flow problem in the neck. Am I right?

cheerleader
Family Elder
Posted: Wed Feb 10, 2010 11:52 am

Algis-
Zamboni used doppler to find indication of azygos blockage by following collateral flow. He needed 2 out of 5 parameters to go ahead with venography. The veins are then seen in the venography- which is when the actual stenosis is located in azygos. Doppler is what he used for azygos and jugular. Please re-read Zamboni's original study...it's all in there. Reflux in the jugulars and vertebral veins implies azygos stenosis...trust me, I've been studying this for awhile.

Venography is the only way to truly see inside the veins. If you are concerned about your own personal situation, take the research to an interventional radiologist and get tested. If you can wait, the research will continue.
cheer
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Results also on BBC

Postby jimmylegs » Thu Feb 11, 2010 5:52 am

Algis
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Posted: Thu Feb 11, 2010 1:11 am
http://news.bbc.co.uk/2/hi/health/8509106.stm
Last edited by jimmylegs on Thu Feb 11, 2010 6:23 am, edited 1 time in total.
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Postby Algis » Thu Feb 11, 2010 6:19 am

OK---Sorry----
Last edited by Algis on Thu Feb 11, 2010 6:27 am, edited 1 time in total.
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Postby jimmylegs » Thu Feb 11, 2010 6:25 am

hi algis, as you can see above, i have been relocating cross posts to this topic as best i can.
the first time i put yours here i neglected the quote tags (now fixed).
JL
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Postby Billmeik » Thu Feb 11, 2010 8:58 am

A subsequent study is planned that would follow patients over time to see if venous insufficiency advances as their disease worsens."


so they think of ccsvi as way more plastic than I suggested. See if it advances. My guess is no.
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Postby Billmeik » Thu Feb 11, 2010 8:59 am

double
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Postby Billmeik » Thu Feb 11, 2010 9:25 am

having slept on my other point I still don't get how they mix up 'include and exclude' but if you added half the border line cases you'd get 62%. It's just they make it sound like you added ALL the border line cases which would be 67%

[/quote]
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Postby Billmeik » Thu Feb 11, 2010 9:33 am

sorry my computer seems to post doles in this forum
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Postby Billmeik » Thu Feb 11, 2010 9:56 am

When the 10.2 percent of subjects in which results were border line were excluded, the percentage of affected MS patients rose to 62.5 percent, preliminary results show, compared to 25.9 percent of healthy contro


oops misplaced the decimal point in my damaged memory. I can see now that 'excluded' would mean they were all included at first but as negatives. So it can make sense. Just not to me.
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