Getting a handle

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

Getting a handle

Postby scorpion » Sun Mar 20, 2011 8:17 am

I wish there was a way we could erase all preconceptions and inital expectations of the "liberation procedure" so we can better get a handle on what has occurred since Zamboni released his "groundbreaking" study over a year and a half ago. It does seem the miracle recoveries have slowed down which maybe means that we are getting closer to the truth about whether the liberation procedure has any effect on the progression of MS or not. What concerns me are two assumptions that I see continually occurring over and over as people try to accurately report what effect angioplasty has had on their MS.

1)ANY "improvement" they experience is immediately credited to the angioplasty procedure. MS is called relapsing remitting because symptoms wax and wane so a symptom that recedes six months after angioplasty MAY be the result of the natural course of someone's disease.

2)Any studies not reinforcing the validity of CCSVI are flawed. There must come a time that people start recognizing the issue of venous blockage in MS (if it occurs at all) is not as clear cut as Zamboni and some others would like us to believe. It is time people allow science to dictate the direction of CCSVI and not emotionally charged postings on internet websites.

The longer we allow the "myths" surrounding CCSVI to linger the longer it will take for us to get clear cut answers as to the validity of CCSVI.
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Postby Jugular » Sun Mar 20, 2011 8:53 am

I think you need to get grip too. :-)

I don't see any abatement in the flow of positive outcomes from liberation. Indeed, they are no longer news, although I very much enjoy reading them. For most of us the course of this disease is a an overall accumulated decline. In my case, I had been getting steadily worse for over a decade. I have never experience the objectively measured reversal that I experienced from liberation, nor the progressive improvement since.

I think many of the studies pro-CCSVI are flawed too. Rushed research is bound to suffer from some design flaws. Over time, the better science should prevail.
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Postby cheerleader » Sun Mar 20, 2011 8:53 am

The abstracts are up from ISNVD, scorpion. I think it's always best to go to the scientists looking at this work. They don't all agree, but they are learning and sharing more now. There are 48 abstracts of work presented last week. You can read the latest research from international vascular and neurovascular specialists. Here's the link-

http://ccsvism.xoom.it/Convegno_ISNVD.html

Here's an interesting one from Dr. Hubbard. We're learning more about hypoxia and venous undershoot via BOLD technology. BOLD stands for Blood Oxygenation Level Dependent, and it gives a good picture of how the brain uses (or doesn't use) blood. What is of interest is that after venoplasty (not calle Liberation anymore) the pwMS had the same level of respone to testing and BOLD levels as normals.

http://ccsvism.xoom.it/ISNVD/Abstract-Hubbard.pdf

BOLD fMRI responses during cognitive tasks in Multiple Sclerosis and effects of angioplasty
Buracas G1, Ponec D2, Gooding J2, Saxon R2, Haacke M3, Sauder H4, Hubbard D4 1Dept Radiology, University of California, San Diego, 2North County Radiology, SanDiego, 3Wayne State U, Detroit MI, 4Applied fMRI Institute, San Diego

Abstract
Introduction
There is renewed interest in the hypothesis that multiple sclerosis may be associated with impaired clearance or insufficient CNS venous drainage - chronic cerebrospinal venous insufficiency (CCSVI). FMRI BOLD offers the possibility to evaluate both neuronal population responses and cortical hemodynamics. Specifically, venous drainage from cortex can be assessed directly by measuring the component of the BOLD hemodynamic
response (HDR) known as the venous undershoot.

Methods
20 patients with multiple sclerosis and 20 normal controls were studied by functional MRI.
The cognitive task was designed to activate a maximum number of cortical and subcortical regions while still being intuitive to an untrained person. The MS patients were re-tested after undergoing internal jugular venoplasty. MR venography, flow quantification and fMRI were conducted on a Siemens 3T scanner.

Results
In healthy control subjects, the task evoked activation in an extensive set of brain areas (task-positive network), including visual, parietal, temporal and frontal cortices. In MS patients the task showed significantly reduced (30-70%) activations compared to normal controls. The default (task-negative) network, in particular the medial prefrontal, posterior cingulate and cuneus cortices, also showed pronounced differences in MS patients compared to the normal controls. Specifically, these areas were not suppressed during task performance in contrast to the expected suppression seen in the normal controls. The time course of the BOLD response showed greater decay and a more pronounced undershoot as compared to the control group. Venoplasty resulted in recovery of the task-negative effects in the default network such that the comparison between controls and post-venoplasty MS patients showed no significant differences (t-test, p<0.05). The pair wise t-test of pre- and
post-venoplasty activations confirmed that the default network suppression was increased post-venoplasty as compared to pre-venoplasty in the same subjects. The task-positive network on the other hand, did not show significant changes as a result of the procedure.
Conclusions
The finding of significant differences between normal controls and MS patients in BOLD response patterns associated with a cognitive task in both task-positive and task-negative cortical networks sheds light on neuronal mechanisms of cognitive impairment in MS patients. Most remarkably, the inhibition of the default network appears to be impaired in posterior parietal and anterior medial prefrontal cortex and this impairment is reversed and in fact normalized by venoplasty. Since BOLD response is a function of cerebral blood flow and volume, and also oxygen metabolism rate, the reduced BOLD responses in both task positive and task-negative networks may reflect not only altered neuronal function but also change in cortical venous blood volume in MS. Thus the recovery of the suppression
in the default network by angioplastic treatment may reflect recovered neuronal and/ or vascular function. Moreover the increase in the venous undershoot component of the BOLD response in MS as compared to controls and its reduction after venoplasty provides evidence of impaired clearance and CNS venous insufficiency and holds out the promise
that this method may provide an objective diagnostic test.

References
Buxton RB, Uluda􀀃 K, Dubowitz DJ, Liu TT. (2004) Modeling the hemodynamic response to brain
activation. Neuroimage, 23 Suppl 1:S220-33.
Zamboni P, Menegatti E, Bartolomei I, Galeotti R, Malagoni AM, Tacconi G, et al.
Intracranial venous haemodynamics in multiple sclerosis. Curr Neurovasc Res 2007;4:252-8.

let us know if you want to discuss any particular paper--
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Lyon » Sun Mar 20, 2011 9:06 am

While I'm among the loudest critics of going by what "seems" to be the case it does "seem" that those not finding benefit from "liberation" are increasingly losing their fear of posting their results and it seems to me they are in the majority here at thisisms recently.

What I find most interesting and confusing is that most of them remain die hard believers despite the loss of cash and lack of (positive) results.
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Naysayer Warning

Postby MarkW » Sun Mar 20, 2011 9:36 am

If you are seeking balanced information on balloon venoplasty go to
www.ccsvi.org and read the info many times over. Listening to the naysayers is dangerous as they appear to raise doubts by asking questions but are naysayers.

Scientists know that nothing is ever proven. Balloon venoplasty for stenosed veins is a personal choice based on your MS and ability to pay. Read my story if you wish.

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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Re: Naysayer Warning

Postby scorpion » Sun Mar 20, 2011 9:57 am

MarkW wrote:If you are seeking balanced information on balloon venoplasty go to
www.ccsvi.org and read the info many times over. Listening to the naysayers is dangerous as they appear to raise doubts by asking questions but are naysayers.

Scientists know that nothing is ever proven. Balloon venoplasty for stenosed veins is a personal choice based on your MS and ability to pay. Read my story if you wish.

MarkW


Same old same old. If you do not buy into CCSVI 100% you are a naysayer because there is no in between when it comes to CCSVI and MS. I still feel that this type of thinking has pushed people who may be interested in learning more or even contributing to CCSVI research away but hey whatever you feel you need to do and say. Cheer I have seen all kinds of papers on CCSVI and my intent in this post was not to discuss them but to merely state some observations I think are important. As for getting a grip(love the play on words by the way Jugular) I feel what I am holding onto suits me just fine thanks! For the sake of this post not turning into an angry tirade against the "naysayer" this will be my last post on this thread.
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Re: Naysayer Warning

Postby Jugular » Sun Mar 20, 2011 10:08 am

scorpion wrote: For the sake of this post not turning into an angry tirade against the "naysayer" this will be my last post on this thread.
That sounds like a Gadhaffi cease fire to me. :-)
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Postby Jugular » Sun Mar 20, 2011 10:15 am

Lyon wrote:While I'm among the loudest critics of going by what "seems" to be the case it does "seem" that those not finding benefit from "liberation" are increasingly losing their fear of posting their results and it seems to me they are in the majority here at thisisms recently.

What I find most interesting and confusing is that most of them remain die hard believers despite the loss of cash and lack of (positive) results.
i disagree about what "seems" to be the case about the benefits of liberation. In any case at least we now have some objective evidence to go by:

http://ccsvism.xoom.it/ISNVD/Abstract-Mehta.pdf

Do you have any liberation studies contrary?
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Postby cheerleader » Sun Mar 20, 2011 10:17 am

Scorpion-
you stated that improvements "wax and wane." and are not quantifiable.

I showed you science that says there is a reason for improvement that is detectable on MRI immediately after venoplasty, due to higher levels of oxygenation and increased blood flow to the brain.

It is hard to have a real discussion based on opinion. That is the reason for the link to the papers. That is what we do at CCSVI Alliance, and why we bring doctors together to discuss this. Because we are moving beyond anecdotal.

www.ccsvi.org
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Lyon » Sun Mar 20, 2011 10:27 am

Jugular wrote: Do you have any liberation studies contrary?
You're asking if I have scientific papers showing that an unproven theory is an unproven theory?
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Postby Jugular » Sun Mar 20, 2011 11:00 am

Lyon wrote:
Jugular wrote: Do you have any liberation studies contrary?
You're asking if I have scientific papers showing that an unproven theory is an unproven theory?
Theory shmeery. We weren't talking about theory but whether there were any proven benefits of undergoing liberation treatment. There were multiple studies demonstrating this to be the case that were presented at the conference. What studies do you have that demonstrate that liberation produces no benefit for MS patients?
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Postby questor » Sun Mar 20, 2011 11:33 am

cheerleader wrote:We're learning more about hypoxia and venous undershoot via BOLD technology. BOLD stands for Blood Oxygenation Level Dependent, and it gives a good picture of how the brain uses (or doesn't use) blood. What is of interest is that after venoplasty (not calle Liberation anymore) the pwMS had the same level of respone to testing and BOLD levels as normals.

Abstract
Introduction
There is renewed interest in the hypothesis that multiple sclerosis may be associated with impaired clearance or insufficient CNS venous drainage - chronic cerebrospinal venous insufficiency (CCSVI). FMRI BOLD offers the possibility to evaluate both neuronal population responses and cortical hemodynamics. Specifically, venous drainage from cortex can be assessed directly by measuring the component of the BOLD hemodynamic
response (HDR) known as the venous undershoot.

Methods
20 patients with multiple sclerosis and 20 normal controls were studied by functional MRI.
The cognitive task was designed to activate a maximum number of cortical and subcortical regions while still being intuitive to an untrained person. The MS patients were re-tested after undergoing internal jugular venoplasty. MR venography, flow quantification and fMRI were conducted on a Siemens 3T scanner.


Cheer,
I was struck by the fact that this paper states only the MS patients were retested, not the controls.

I've had a number of neuropsych exams over the years that include a problem solving component. My results are often skewed in the problem solving component because of the learning that takes place in each exam, such that I tend to improve in repeated tests in this area because of this.

It seems that to discount this effect in the fMRI BOLD tests, both populations should have been retested and the results compared. As it is, you can't tell how much the results were affected by this "learning" aspect in the angioplasty group. There is nothing to show how the control group results would have changed after retesting.

Just a comment, I'm surprised this wasn't taken into account, perhaps I'm misreading this and or missed why this wouldn't be a factor.

BTW, I expect I'm not alone in getting much out of the "naysayer" comments, I appreciate both side of the arguments in the CCSVI discussions.

Thanks,

--Tracy
CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
Copaxone and Ampyra user
Botox Bladder Injections
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Postby Cece » Sun Mar 20, 2011 11:52 am

1)ANY "improvement" they experience is immediately credited to the angioplasty procedure. MS is called relapsing remitting because symptoms wax and wane so a symptom that recedes six months after angioplasty MAY be the result of the natural course of someone's disease.

What about patients who are progressive who show improvements? We have seen such outcomes. It is hard to argue that this would have been the natural course of their disease.

My own improvements were dramatic enough, it would be hard to believe that seeing new degrees of brightness in colors, such as I haven't seen before, was going to happen that week regardless of whether I had the procedure or not. I'd also been getting worse this past year, not better.

It's still a good point, especially with RR. They've been able to deal with RR fluctuations in research such as drug research, I think the research in CCSVI with be able to deal with it too.

Questor, that is interesting, I wonder if they did measure that? MRIs can be expensive, perhaps that was a cut corner. It's of note that the MS patients did not improve at the task-activated areas of the brain. Those were the same as before the procedure, at 30-70% less than the healthy subjects. (The improvement was in the non-task activated default areas, which had been at MS patient lowered levels prior to the procedure but matched the healthy patients post-procedure. Improvements also seen in the BOLD undershoot.)
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Postby Lyon » Sun Mar 20, 2011 12:21 pm

Cece wrote: What about patients who are progressive who show improvements? We have seen such outcomes. It is hard to argue that this would have been the natural course of their disease.

My own improvements were dramatic enough, it would be hard to believe that seeing new degrees of brightness in colors, such as I haven't seen before, was going to happen that week regardless of whether I had the procedure or not. I'd also been getting worse this past year, not better.
While it doesn't always happen, improvement can be experienced with any phase of MS http://tinyurl.com/6cfw8s7 Not to hint that all improvements are certainly due to placebo but it's literally certain that placebo plays at least some part in the subjective "improvements" seen.

The degree of subjective improvement due to placebo hasn't been determined and in this particular situation you haven't even considered placebo effect at all.
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Re: Getting a handle

Postby thornyrose76 » Sun Mar 20, 2011 12:32 pm

scorpion wrote:I wish there was a way we could erase all preconceptions and inital expectations of the "liberation procedure" so we can better get a handle on what has occurred since Zamboni released his "groundbreaking" study over a year and a half ago. It does seem the miracle recoveries have slowed down which maybe means that we are getting closer to the truth about whether the liberation procedure has any effect on the progression of MS or not. What concerns me are two assumptions that I see continually occurring over and over as people try to accurately report what effect angioplasty has had on their MS.

1)ANY "improvement" they experience is immediately credited to the angioplasty procedure. MS is called relapsing remitting because symptoms wax and wane so a symptom that recedes six months after angioplasty MAY be the result of the natural course of someone's disease.

2)Any studies not reinforcing the validity of CCSVI are flawed. There must come a time that people start recognizing the issue of venous blockage in MS (if it occurs at all) is not as clear cut as Zamboni and some others would like us to believe. It is time people allow science to dictate the direction of CCSVI and not emotionally charged postings on internet websites.

The longer we allow the "myths" surrounding CCSVI to linger the longer it will take for us to get clear cut answers as to the validity of CCSVI.


An example: Denise Manley, Secondary Progressive-there is no waxing/waning of symptoms, you are in a "progressive" state. She had the procedure and she is just fine. Anyone who is anyone and has been following the CCSVI "theory" knows who Denise Manley is. You might want to do a little more research before you do anymore posting.
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