New Wheelchair Kamikaze Post on the Current State of CCSVI

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

Postby jackiejay » Tue Jun 15, 2010 5:26 am

there is a total double standard to CCSVI....there are enough "published" papers on it to go ahead...as they are doing in Kuwait and Jordan...I am sure they will "publish" when they have enough stats to do so........common sense prevails sometimes....I say sometimes.
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Postby patientx » Tue Jun 15, 2010 6:31 am

ozarkcanoer wrote:I've had a real chuckle over all these plumbing and electrical analogies !! Now if I could just get you guys to help diagnose our leaky roof that has caused us countless misery for 20 years. Is it the roof or the chimney or the tuckpointing or leaky bricks or the downspouts or just what the heck ?


Your gutters are clogged, causing water to back up under the shingles and/or flashing. The plywood is probably rotted.

Now where can I send my bill. :)
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Postby L » Tue Jun 15, 2010 6:40 am

My house is completely submerged..
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Postby marcstck » Tue Jun 15, 2010 12:13 pm

sbr487 wrote:Mark, I am a bit surprised at the tone of your article given that CCSVI was able to correlate symptoms you have been having with clear vascular issues in the body.

There are 2 distinct aspects about CCSVI
1) impaired blood flow behind MS theory
2) approach towards correcting 1)

Lack of favorable results in 2) does not mean failure of 1) in anyway.

this shouldn't come as a surprise, but patients need to be keenly aware that the liberation procedure is not always the panacea that its most fervent advocates often assert it to be.


Given that quite a bit of knowledge is still evolving on the CCSVI and liberation procedure, it would be incorrect to pass judgement at this time ("liberation procedure in the current form" would have been more preferable).

Lack of expected results in CCSVI, in my opinion, might not be due to total flaw in the theory itself but probably because we are still grappling with some unknowns here.


I'm a bit surprised that people are perceiving that the blog post casts CCSVI in a negative light, as I state numerous times in the piece that I believe that CCSVI has validity and will be shown to be a major part of the MS puzzle.

As for my own procedure proving a correlation between the abnormality that was found in my jugular and my neurologic symptoms, that unfortunately is not yet the case. I now know that I have neurologic symptoms and a blockage in my jugular. This doesn't prove that one is related to the other.

I also have numerous endocrine problems, I know through blood tests that I'm infected with EBV, and another of the herpes viruses (not the genital kind, thankfully). My mom is a type I diabetic (children of diabetics have a much higher chance of developing MS than the general population). I have autoimmune thyroid disease (Hashimoto's thyroiditis). All of these have been postulated to be linked to MS. None, though, including venous abnormalities, has yet been proven to be a cause of the disease.

Do I suspect that my blocked jugular plays a role in my neurologic problems? Absolutely, but again, this has yet to be proven. There could very well be a substantial amount of "normal" people (don't forget, the Buffalo study showed that one quarter of the population has some kind of CNS venous abnormality) walking around perfectly well with a similar situation in their jugulars.

As for your second point, that the current inadequacies of the liberation procedure may be due to a lack of experience and full understanding of CCSVI, again, I'm in total agreement, and I thought I made that clear in the post. I will go back and insert the word "current" as you suggest.

Thanks for your input.
Last edited by marcstck on Tue Jun 15, 2010 12:15 pm, edited 1 time in total.
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Postby marcstck » Tue Jun 15, 2010 12:14 pm

L wrote:
marcstck wrote:As far as Simka,, Jordan, and Kuwait go, they haven't published any papers detailing the results of their work.


Sorry to butt in again, but Simka has published: http://www.ncbi.nlm.nih.gov/pubmed/20351666


thanks, I hadn't seen that. I stand corrected.
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Postby MrSuccess » Tue Jun 15, 2010 1:08 pm

Those 25 % in Buffalo ..... are not perfectly healthy. Healthy people have arteries and veins that flow unimpeded .

My initial MS research included ....reading information posted on the NMSS webpage . I clearly remember reading the NMSS information page regarding MRI brain lessions.

They [- the NMSS-] stated that healthy people have been subjected to MRI's .... which revealed lessions .....and exhibited no disabilities . :idea:

So ..... what do you make of that ? :?:

So we have Neuro's saying CCSVI is bumpf .... as X % of people tested have blocked veins .... but do not have MS . They like to point their finger at your MRI ..... count the size , location , and volume of lessions ...dub you as having MS ..... and ask which drug would you like ?

Do they not read their own webpage information ? :twisted:

So .... do healthy people have brain lessions ? :?:

No they do not. Just as healthy people do not have restricted veins and arteries .

Accepting and immediatly treating CCSVI is vital .

To wait for disability is unconscionable. :twisted: :twisted: :twisted:




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Postby marcstck » Tue Jun 15, 2010 2:28 pm

MrSuccess wrote:Those 25 % in Buffalo ..... are not perfectly healthy. Healthy people have arteries and veins that flow unimpeded .

My initial MS research included ....reading information posted on the NMSS webpage . I clearly remember reading the NMSS information page regarding MRI brain lessions.

They [- the NMSS-] stated that healthy people have been subjected to MRI's .... which revealed lessions .....and exhibited no disabilities . :idea:

So ..... what do you make of that ? :?:

So we have Neuro's saying CCSVI is bumpf .... as X % of people tested have blocked veins .... but do not have MS . They like to point their finger at your MRI ..... count the size , location , and volume of lessions ...dub you as having MS ..... and ask which drug would you like ?

Do they not read their own webpage information ? :twisted:

So .... do healthy people have brain lessions ? :?:

No they do not. Just as healthy people do not have restricted veins and arteries .

Accepting and immediatly treating CCSVI is vital .

To wait for disability is unconscionable. :twisted: :twisted: :twisted:




Mr. Success


I have been told by some of the top vascular physicians in the country (at the National Institutes of Health) that they could show me many venograms of people who have vascular abnormalities very similar to mine (blockages in the internal jugulars) that show absolutely no ill effects from those blockages.

As for lesions appearing on MRIs, many people, as they age, do exhibit lesions as seen on MRIs. MRIs show lesions, but do not indicate what those lesions are. There are a variety of conditions that can show up as lesions on MRIs, including tumors, areas of inflammation, etc. When my MRIs were first looked at by neurologists, they at first struggled to determine whether or not they were looking at a tumor or an area of demyelination. MRIs themselves are nonspecific.

Now, there have been postmortems on "healthy" people that appear to have MS type lesions in their CNS, which apparently had no ill effect on during the course of their lives. Thus the concept of "benign MS".

I suppose it all comes down to what defines healthy? A full scan of almost any human being will reveal abnormalities specific to them. If these abnormalities are doing them harm, obviously they must be fixed. The vast majority of them, though, are simply benign aberrations. We are complex beings, not stamped from a human being cookie-cutter.

Again, I must emphasize, I am a supporter of CCSVI. I have undergone an attempted liberation procedure. I am not emotionally wed to to any hypothesis or treatment regarding the disease, though. I try to weigh all of the facts, both those in favor of a theory that I want to be true, and those against it.

The blind of defense of any hypothesis or ideology does a disservice to that being defended, and diminishes the credibility of the person doing the defense.
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Postby MrSuccess » Tue Jun 15, 2010 3:03 pm

Marc - all that information you just posted is/was provided in the NMSS webpage . Yes ... postmortem studies revealed so-called healthy people having brain lesions . So much for using brain lesions as a score card for neurologists. :wink:

The more we know ..... the more we are confused.





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Postby magoo » Tue Jun 15, 2010 4:12 pm

"The blind of defense of any hypothesis or ideology does a disservice to that being defended, and diminishes the credibility of the person doing the defense."

Blindly supporting to me means there is no information or fact to support your cause. There is information to support this cause. Enough that you, me, and many others went out and tried the treatment.
I understand wanting everyone to keep a level head and not make remarks like "cure". I don't find too many people discussing CCSVI saying that. I just feel a lot of excitement and joy from the gains being made.
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby concerned » Tue Jun 15, 2010 4:15 pm

People do say "stop disease progression" a whole lot, but I don't think that there's much if any info on that. Ditto for causation.
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Postby magoo » Tue Jun 15, 2010 4:20 pm

concerned,
Yes, those things will take time to sort out. I think I'll keep looking over my shoulder for the MonSter for quite a while.
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Re: New Wheelchair Kamikaze Post on the Current State of CCS

Postby nicko » Tue Jun 15, 2010 6:54 pm

marcstck wrote:
nicko wrote:
marcstck wrote:Just posted to my blog late last night. This post may cause some angst, as it's not blindly pro-CCSVI, but it's my honest assessment of where we've been, where we are now, and the best way to move forward with Dr. Zamboni's theory.

http://www.wheelchairkamikaze.com/2010/ ... ccsvi.html


Well said,

You mention about hysteria and extremism. I don’t think for everyone it’s the fact that we cannot get ccsvi treatment right now that’s getting us fired up. Most people are intelligent beings and understand that this is very new and needs to be proven. All most of us we want the right to control our own health. Right now SOME neurologists are saying what we can and cannot do. Just look at the 2.4 million being awarded from the MS society is it not going entirely to studies run by neurologists? Wouldn’t you expect a vascular Dr to control a study on a vascular issue? Even my own neurologist told me that blocked neck veins are perfectly harmless. They do not have the expertise in the vascular field to control this matter. I want a vascular Dr to tell me what should be done. They should be the ones telling us what to do. Right now neurologists are controlling our ability to have proper health care. I can see where a great deal of anger comes from this. It gets me fired up as well. Just because we have MS doesn’t mean neurologist should control every aspect of our health. I do believe that we need to fight for this to change. Us as a ms community have a voice and we should use it wisely. A lot of this hysteria we are seeing is from people venting their anger on blogs, forums etc. It’s the only way for some people to get rid of this frustration. I think this frustration needs to be pointed in the right direction. We just need some organization so we don’t look like these crazy fools.


Here's another piece of heresy: neurologists are not the enemy. Every vascular surgeon or interventional radiologist I've talked to has told me that they know virtually nothing about MS. They can identify blocked veins. Once you get into the effects of those blocked veins are having on the CNS, you're into territory covered by neurology. Therefore, neurologists are a vital part of determining the relationship between CCSVI and MS. All of the studies funded by the MS Society's do include neurovascular experts as part of the studies.

It is possible that the blocked veins being found are entirely harmless. The CNS venous system has been so little studied that there is very little data on the number of people, healthy or not, who are walking around with blockages in their veins. We're not talking about arteries here, in which blockages almost always signify a potentially dire situation. Venous anatomy is much more flexible (both literally and figuratively) then arterial anatomy. There is redundancy built into venous systems, and collateral veins develop to take up the slack when the primary vessels develop problems.

This is not to say that the blocked veins are harmless. This is one of the known unknowns about CCSVI. It could well turn out that a significant portion of the "healthy" population has blockages that would be termed CCSVI, without suffering any ill effects from these blockages. On the other hand, it's possible, maybe even probable, that CCSVI blockages play a major role in MS (and maybe even some other neurologic diseases). As of this moment, though, we simply do not know.

To make the assertion that neurologists should play no role in the study of CCSVI is a completely misguided notion. There's lots of talk of "plumbers" and "electricians" here on TIMS. If we were simply talking about blockages for blockages sake in CCSVI, then, yes, we should only deal with plumbers. But since these blockages are allegedly causing severe dysfunction in our central nervous systems, the electricians are required to ascertain just how and what disrupted blood flow is doing to the CNS.

If your kitchen sink was backed up, but not affecting any other item in your kitchen, then only a plumber would be called. If that backed up sink overflowed and shorted out the electrical outlets in your kitchen, you'd need to call an electrician.

CCSVI presents a complicated picture, experts in multiple disciplines will be required to sort it out.


You are correct that neurologists are needed to determine if opening these veins provide relief to ms symptoms or the disease process. But I still believe they shouldn't be the ones controlling the studies. Especially when these studies are only finding these abnormalities in patients, not treating. Neurologists know verly little of the vascular system or what may or may not be common in normal patients. Are they really the best ones in finding a problem in the vascular system? If anything they should be working together.

But I see a control issue... neurologists are taking control because ms has been in their hands for the last how many years? I do believe that because of this we are not getting the proper health care we deserve.
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Postby sbr487 » Tue Jun 15, 2010 8:36 pm

magoo wrote:"The blind of defense of any hypothesis or ideology does a disservice to that being defended, and diminishes the credibility of the person doing the defense."

Blindly supporting to me means there is no information or fact to support your cause. There is information to support this cause. Enough that you, me, and many others went out and tried the treatment.
I understand wanting everyone to keep a level head and not make remarks like "cure". I don't find too many people discussing CCSVI saying that. I just feel a lot of excitement and joy from the gains being made.


I have to agree with that.

1) After decades of MS research, it is still classified as a disease of unknown origin
2) We have CCSVI which gives a convincing theory behind MS and also a way to correct the abnormality

I am not sure what would be considered blind? following 1 or 2.
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Postby cheerleader » Tue Jun 15, 2010 9:01 pm

When someone is diagnosed with liver disease, the veins are checked. If the hepatic vein is blocked, and there are signs of collaterals and inefficient drainage, the diagnosis is Budd Chiari. In organ failure, the venous system is routinely checked. Blood flow is considered an important assessment.

Hearing Dr. BB Lee in Bologna was a mind-opening experience. Here stood an eminent researcher and physician stating that we had no idea how slowed extracranial venous drainage of the brain affected gray matter. There were simply no studies. And this astounded him. But if we looked to Budd-Chiari, we could see how a lifetime of slowed perfusion could damage the organ beyond repair. And there are no brain transplants.

Marc, I'm sure there are people with blocked hepatic veins whose collaterals are just fine, and they go to their graves with mildly impaired livers. I'm sure there are migrainers who have some venous issues and may show a bright spot on MRI...but this does not mean that venous drainage impairment can be tolerated by everyone . I'm sure the doctors can remove jugular veins in cancer patients, and they can show you another person who has the exact same blockage as you, Marc. But they are not you.

There may very well be some crazy, Rube Goldbergesque process in MS...venous stenosis + EBV infection + blood pressure changes + insufficient vitamin D + a bit of bad luck/genes and you get MS. Who knows? But the fact that venous anomalies are showing up in MS patients and confounding vascular doctors and IRs should give us pause. And if patients want to have their veins opened, they should be allowed to be seen and treated by vascular doctors, just as Budd Chiari patients are. Because the brain is damaged and the veins draining that organ are not working properly.

And I don't see your essay as anything more than your usual thought-provoking and articulate writing, Marc.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby CureIous » Tue Jun 15, 2010 9:48 pm

patientx wrote:
marcstck wrote: Every vascular surgeon or interventional radiologist I've talked to has told me that they know virtually nothing about MS.

I was told exactly the same thing by a few vascular experts. Not that there's anything wrong in this, and their candor was welcome.

If your kitchen sink was backed up, but not affecting any other item in your kitchen, then only a plumber would be called. If that backed up sink overflowed and shorted out the electrical outlets in your kitchen, you'd need to call an electrician.

Hey, good (counter)analogy.


Great stuff. Also you might want the sparky (as we call them on the job), and the plumber to have a "meeting of the minds" to ensure neither gets electrocuted in the process of effecting repairs ;)
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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