Getting a handle

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
Lyon
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Post by Lyon »

sou wrote: Can you guarantee that this structural abnormality can safely be left untreated? Yes or no?
In the same light that I can't guarantee that it won't cause a problem, you can't guarantee that it has or will.

My (THE) point remains the same, it remains to be proven that restrictions aren't the norm and it remains to be proven that restrictions are responsible for the compilation of symptoms we refer to as Multiple Sclerosis and it remains that the burden is upon someone to prove that there really is such a thing as a chronic cerebrospinal venous insufficiency and that it does pose a health problem and that eliminating it affords a benefit, is safe and that the benefits (if shown) outweigh the risks...some of which we're already aware.
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Post by Brainteaser »

I'm trying to type this with one finger. Prior to my CCSVI treatment in Nov 09 I could use 2-3 fingers and after my CCSVI treatment in April 10, I could type with 5-6 fingers. Other parts of my body have mirrored these ups and downs. Therefore, my health improved with CCSVI treatment last year but has since worsened.

Having been treated a number of times by a total of three different doctors, I am of the opinion that CCSVI is associated very strongly with MS but at this stage no-one knows how. If anyone says otherwise, then they are not being frank and objective.

I also put the neuros, placebo, skeptics and naysayers etc into a big storage box, not to be opened til Xmas. They remind me of smart-alec football fans who over here we call couch potatoes or Monday morning experts. One thing I have learned in life is that 99% of all decisions by human beings are based on money/wealth/power, so to me there would need to be a big fat question mark over anyone who has an excessive and disproportionate level of opposition to CCSVI.

If you accept the veracity of my last statement regarding opponents to CCSVI, equally we need to be very cautious about anyone offering services in CCSVI. I just think that there is no-one out there who really knows enough about CCSVI. It worries me that patients are being pumped through hospitals and clinics by the hundreds and thousands without proper follow-up and after-care, nor even an understanding and awareness by the medical staff of how things turn out down the track. As I say, I've been treated by three CCSVI doctors, none of whom have seemed the slightest bit interested in the nuances I have experienced in terms of the ups and down body changes I have experienced over the last year or so. How ever doctors involved with CCSVI expect to learn from the exercise, wihout talking to their patients after treatment, is beyond me. Surely, there is only so much they can learn from each other at conferences and by viewing images.

With these things said, my view is that people should not rush out the door and get CCSVI treatment wherever they can, as fast as possible. Lew is a fabulous guy and very sincere in what he says, but as fate would have it, those initially treated at Stanford have landed on their feet to some degree. Because of the Stanford mishaps, those small number of early pioneers seem to have received a greater level of follow-up than people treated elsewhere.

I am satisfied in my own mind that CCSVI can work for me. I sense there are many others who have experienced the treatment and who think like-wise. After my treatment in April 10, it seemed as if the MS clock had been turned back about 10 years, something I'd never experienced with any of the crabs, tysabri, sct, bvt or anything else; all of which were a big fat nought. Unfortunately, my improvements were not sustained and there has been no intelligent process to find out what happened. So the moral of the story is that CCSVI can work, in my opinion, but until doctors of all persuasions put the patient front and centre in the process, then we may not progress very far and it will all be a bit of hit and miss.


Edited to clarify my current state of health.
Last edited by Brainteaser on Sun Mar 27, 2011 2:15 am, edited 1 time in total.
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Post by Cece »

Brainteaser, aptly said. With Dr. Dake, he chose Coumadin for his patients which requires a great deal of aftercare. He also required his patients to have a two month follow-up appointment. This was months before the unfortunate outcomes with Holly and radeck. Any patient with stents was also required to have a one-year follow-up.

When you say your MS has turned back ten years, my MS has turned back about five years easily. Nothing else ever did that for me. Tonight after reading to my sons, I said, "This bedtime story has been brought to you by Dr. Sclafani," in my best end-of-Sesame-Street voice, and my son said, "Really?!" and my husband and I looked at each other and laughed, because the answer was, yes, really.
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Post by Lyon »

Brainteaser wrote:I'm trying to type this with one finger. Prior to my CCSVI treatment in Nov 09 I could use 2-3 fingers and after my CCSVI treatment in April 10, I could type with 5-6 fingers. Other parts of my body have mirrored these ups and downs.
I'm not understanding. You've had two CCSVI treatments and you're typing with one finger as opposed to originally typing with 5-6 fingers and it's not clear whether that is supposed to be an improvement or worsening?
Brainteaser wrote:After my treatment in April 10, it seemed as if the MS clock had been turned back about 10 years,
What causes you to say that? Have the improvements continued to multiply in the time since?
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Re: Getting a handle

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Lyon wrote:So, as if the medical/insurance costs in the "developed" world aren't already astronomical enough, in your opinion the medical system should change from responding (sometimes) to known problems and add the costs of investigating and treating unproven (suspected) problems?
CCSVI treatment, even two or three treatments if needed over time, is considerably less expensive than any of the CRABs let alone Tysabri or Gilenya.
If someone has the desire to be liberated and can afford to do it and doesn't expect their fellow countrymen to accept the costs of their emergency and follow up care afterwards more power to them.
You smoked for years. Cigarettes are an addictive, carcinogenic poison. Why should any of us non-smokers be required to contribute to your pending cancer and/or lung disease treatment?
With that in mind there would be no need to prove that leaving restricted veins is safe......aside from the fact as I've said so many times before, the burden of proof is and will always be on those trying to prove that restricted veins are not only unsafe but prove that restricted veins aren't part of nature's design.
It's ludicrous to think that anyone could really be serious when they propose that restricted blood perfusion in your brain could be harmless.


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Re: Getting a handle

Post by scorpion »

NHE wrote:
Lyon wrote:So, as if the medical/insurance costs in the "developed" world aren't already astronomical enough, in your opinion the medical system should change from responding (sometimes) to known problems and add the costs of investigating and treating unproven (suspected) problems?
CCSVI treatment, even two or three treatments if needed over time, is considerably less expensive than any of the CRABs let alone Tysabri or Gilenya.
If someone has the desire to be liberated and can afford to do it and doesn't expect their fellow countrymen to accept the costs of their emergency and follow up care afterwards more power to them.
You smoked for years. Cigarettes are an addictive, carcinogenic poison. Why should any of us non-smokers be required to contribute to your pending cancer and/or lung disease treatment?
With that in mind there would be no need to prove that leaving restricted veins is safe......aside from the fact as I've said so many times before, the burden of proof is and will always be on those trying to prove that restricted veins are not only unsafe but prove that restricted veins aren't part of nature's design.
It's ludicrous to think that anyone could really be serious when they propose that restricted blood perfusion in your brain could be harmless.


NHE
NHE it has yet to be shown that CCSVI treatment has any effect whatsoever on MS symptoms so comparing it the CRABS drugs, although they are admittedly minimally effective for a number people, is like comparing apples and oranges. Since most people are aware of how I feel about relying solely on anecdotal information to draw a conclusion I guess there is no need to reiterate what I have said before. Honestly we could discuss the significance of anecdotal info. until we are blue in the face and probably not agree which I think is ok ?
I guess my first thought regarding your question about restricted blood flow to the brain is how we define it. There is obviously a point when lack of blood flow would cause problems but what is that threshold and is the decrease in blood flow to the brains of people with MS(if that is the case) significant enough to cause symptoms?
As for the smoking analogy I see where you are coming from but it seemed a little harsh.....
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Post by Lyon »

NHE wrote:CCSVI treatment, even two or three treatments if needed over time, is considerably less expensive than any of the CRABs let alone Tysabri or Gilenya.
As scorpion mentioned, regardless of how effective the crabs are they've gone through the proper hoops and are considered effective. At this point CCSVI treatment hasn't and isn't within the realm of even comparison.
NHE wrote: You smoked for years. Cigarettes are an addictive, carcinogenic poison. Why should any of us non-smokers be required to contribute to your pending cancer and/or lung disease treatment?
I can’t imagine a better comparison but it has to be remembered from the start that the cigarette companies have always focused on the young and naïve customers to create a lifelong customer through an addiction considered harder to quit than heroin. DO we consider the poor decision to have been made by the 16 year old or the, hopefully wiser, 40 or 50 year old who inherited the addiction?
Either way, in both situations, as with ANY situation, there is a moral issue in not treating someone who requires treatment despite the underlying reasons. In either case it doesn’t mean that the medical community or fellow taxpayers should or would be overjoyed about it to the point of offering pro-active treatment and that’s what we’ve seen in both cases. I suppose only someone who has smoked realizes the ongoing disgust shown by the medical community when they see that pack of cigarettes in your shirt pocket, the disgust of your fellow citizens when you find yourself having to smoke in the middle of a field in the middle of winter. Yes, good comparison. Both smokers and those liberated are pariahs and are treated begrudgingly and maybe that is things should be.
NHE wrote:It's ludicrous to think that anyone could really be serious when they propose that restricted blood perfusion in your brain could be harmless.
That’s putting the cart quite a distance before the horse. Historically over 90% of hopeful MS treatments have eventually proved not to have had merit. The theory of CCSVI should have had to have proven itself not to be among those odds EXCEPT for the fact that an

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got hold of a wonderous claim that Zamboni had made and put it on the internet to go viral before the claim was substantiated…..to date the original claim which brought the theory of CCSVI to everyone’s attention has yet to be substantiated, which normally would only identify a theory as being of interest.
AFTER conclusively showing that venous obstructions are more common in PWMS than normal it would need to be shown that there actually is a “insufficiency” and that it is capable of causing the noticed symptoms and also that our current abilities to treat it can provide a favorable risk/benefit ratio…….an option that a lot of people don’t seem to be considering is that even if CCSVI proves to be real, if our current ability to treat it is causing more problems than it is solving….we shouldn’t be doing it. In other words, there are other recognized ailments that we aren’t advanced enough at this point to treat with favorable outcomes. Sad but true.
NHE wrote:It's ludicrous to think that anyone could really be serious when they propose that restricted blood perfusion in your brain could be harmless.
Even if we were at the point which would justify answering your question it remains that we don’t know a “normal” venous system from an aberrant venous system. At this point it hasn’t been shown with certainty that a PWMS venous system differs from the norm and your question hints that it’s foolish to even think that a problem isn't obvious when in fact a problem has yet to be shown. No rise in blood pressure, no or fractional rise in pressure in the specific areas where damage is supposedly being caused doesn't denote an obvious problem.

Until a problem is shown the answer is that often times what seems logical isn’t and historical MS research and treatment is a good example of that. At different times in history it seemed logical that arsenic would help PWMS and so they treated them with arsenic and they didn’t document anything but it “SEEMED” PWMS lived longer and fared better. At other times infections seemed to be causing all the curable problems so it “SEEMED” obvious that PWMS would also benefit from treatment with antibiotics and in the lack of good record keeping it “SEEMED” that antibiotics helped PWMS live longer and fare better but in the mid 1950’s it became obvious that well documented studies and peer review were the best hopes of overcoming the fallibilities of relying only on human logic/seems like/what is obvious.

Interestingly, a couple of years ago I worked on a powerpoint project with Dr Kurtzke for a presentation he was doing in Mexico City on the first MS peer review article, considering he was involved with it. Isoniazid had for some time “seemed” beneficial to PWMS, but when objectively studied it proved not to be, despite what had previously “seemed” obvious.
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NHE
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Re: Getting a handle

Post by NHE »

Lyon wrote:
NHE wrote:It's ludicrous to think that anyone could really be serious when they propose that restricted blood perfusion in your brain could be harmless.
Even if we were at the point which would justify answering your question it remains that we don’t know a “normal” venous system from an aberrant venous system. At this point it hasn’t been shown with certainty that a PWMS venous system differs from the norm and your question hints that it’s foolish to even think that a problem hasn’t been shown, when in fact a problem has yet to be shown.
That's where you're wrong. Reduced perfusion in PwMS compared to controls has been published under the scrutiny of peer review.

http://www.thisisms.com/ftopict-16018.html


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Re: Getting a handle

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Symptoms of MS correlate with reduced cerebral blood perfusion...

Perfusion magnetic resonance imaging correlates of neuropsychological impairment in multiple sclerosis
J Cereb Blood Flow Metab. 2008 January ; 28(1): 164–171.
  • Although cognitive impairment is common in multiple sclerosis (MS), its pathophysiology is still poorly understood. Abnormalities of cerebral blood flow (CBF) have long been acknowledged in MS and advances in perfusion magnetic resonance imaging (MRI) allow for their assessment in vivo. We investigated the relationship between regional perfusion changes and neuropsychological (NP) dysfunctions in patients with relapsing-remitting and primary-progressive MS. Absolute CBF, cerebral blood volume (CBV) and mean transit time were measured in 32 MS patients and 11 healthy controls using dynamic susceptibility contrast-enhanced T2*-weighted MRI. A comprehensive NP test battery was administered to all patients. A mixed model analysis of covariance was performed for group comparisons in terms of perfusion measures in normal-appearing white matter (NAWM) and deep gray matter (GM). Pearson’s correlations were used to describe the association of perfusion metrics with NP Z-scores. CBF and CBV values were significantly decreased in both NAWM and deep GM in MS patients compared with controls (P = 0.01). In all patients, deep GM CBF was significantly associated with Rey Complex Figure Test (RCFT)-Copy (r = 0.5; P = 0.001) and deep GM CBV and NAWM CBV were significantly associated with Color-Word Interference Inhibition Switching test (D-KEFSIS) (r = 0.4; P = 0.008 and r = 0.4; P = 0.02). However, the only associations that remained significant after Bonferroni correction were between deep GM CBF and RCFT-Copy (P = 0.006), and deep GM CBV and D-KEFSIS (P = 0.04). Our results suggest a role for tissue perfusion impairment in NP dysfunction in MS. Large-scale studies are needed to characterize better this association.
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Re: Getting a handle

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Reduced cerbral blood perfusion in PwMS compared to controls correlates with EDSS...

Pattern of Hemodynamic Impairment in Multiple Sclerosis: Dynamic Susceptibility Contrast Perfusion MR Imaging at 3.0 T
Neuroimage. 2006 December; 33(4): 1029–1035.
  • This study aimed to determine regional pattern of tissue perfusion in the normal-appearing white matter (NAWM) of patients with primary-progressive (PP), relapsing-remitting (RR) multiple sclerosis (MS) and healthy controls, and to investigate the association between perfusion abnormalities and clinical disability. Using dynamic susceptibility contrast (DSC) perfusion MRI at 3 Tesla, we studied twenty-two patients with clinically definite MS, eleven with PP-MS and eleven with RR-MS and eleven age- and gender-matched healthy volunteers. The MRI protocol included axial dual-echo, dynamic susceptibility contrast enhanced (DSC) T2*-weighted and post-contrast T1-weighted images. Absolute cerebral blood flow (CBF), cerebral blood volume (CBV) and mean transit time (MTT) were measured in the periventricular, frontal, occipital NAWM, and in the splenium of the corpus callosum. Compared to controls, CBF and CBV were significantly lower in all NAWM regions in both PP-MS patients (p values from <0.0001 to 0.001) and RR-MS (p values from <0.0001 to 0.020). Compared to RR-MS, PP-MS patients showed significantly lower CBF in the periventricular NAWM (p= 0.002) and lower CBV in the periventricular and frontal NAWM (p values: 0.0029 and 0.022). EDSS was significantly correlated with the periventricular CBF (r=−0.48, p=0.0016) and with the periventricular and frontal CBV (r=−0.42, p=0.015; r=−0.35, p=0.038, respectively). This study suggests that the hemodynamic abnormalities of NAWM have clinical relevance in patients with MS. DSC perfusion MRI might provide a relevant objective measure of disease activity and treatment efficacy.
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Post by Lyon »

NHE, you more than most realize that "published" isn't "proof" as Prineas and Barnett can attest.
Abnormalities of cerebral blood flow (CBF) have long been acknowledged in MS and advances in perfusion magnetic resonance imaging (MRI) allow for their assessment in vivo.
And a damning point to that argument is to question how valid the statement "long been acknowledged" can be when even now with our vastly superior imaging ON THIS DATE we still are struggling, as is imminently obvious in reading thisisms, that it's still nearly impossible to accurately make such assessments.

I'm far from convinced but even if I were, these papers obviously haven't convinced the medical community as a whole and they are the ones who need convincing.
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Post by Lyon »

Don't worry, I got ya covered jimmy, but I'm not able to lock the thread!
Arron wrote:However, there can be too much of a good thing. If you disagree with someone, please succintly state why and let it go at that. Point, counterpoint, counter-counter point, etc. is not useful-- the reality is that after the first disagreement, you will rarely convince another of something they feel strongly about unless you have shocking new information to share. The drawn-out debates also turn people off from reading the messages in the first place.
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Post by Cece »

Great research, NHE. I also think Dr. Hubbard's fMRI findings is of relevance.
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.
http://ccsvism.xoom.it/ISNVD/Abstract-Hubbard.pdf
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Re: Getting a handle

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Lyon wrote:NHE, you more than most realize that "published" isn't "proof" as Prineas and Barnett can attest.
Abnormalities of cerebral blood flow (CBF) have long been acknowledged in MS and advances in perfusion magnetic resonance imaging (MRI) allow for their assessment in vivo.
And a damning point to that argument is to question how valid the statement "long been acknowledged" can be when even now with our vastly superior imaging ON THIS DATE we still are struggling, as is imminently obvious in reading thisisms, that it's still nearly impossible to accurately make such assessments.
It's easy to quickly dismiss such a statement from a quick reading of the abstract. Perhaps it's not so easy once you've read the full paper and examined the 44 or so cited references (many of which directly address the issue of reduced cerebral perfusion in PwMS).


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Re: Getting a handle

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NHE wrote:It's easy to quickly dismiss such a statement from a quick reading of the abstract. Perhaps it's not so easy once you've read the full paper and examined the 44 or so cited references (many of which directly address the issue of reduced cerebral perfusion in PwMS).
I can see where you're coming from, I honestly can, but I only have so much time to spend studying and what I want to spend my time on is the hygiene hypothesis, Tovaxin (not much going on in that front) and rebooting the immune system.

As mentioned before, considering that more than 90% of new theories amount to nothing and the theory of CCSVI mistakenly was bumped to the front of the line and still has the odds greatly against it, I'm not going to waste my time with HOW CCSVI works when IF IT WORKS hasn't been proven and concern for that is a better use of time.
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