This Is MS Multiple Sclerosis Community: Knowledge & Support

A doctor posted the following comment with some intelligent questions concerning the CCSVI theory on the Buffalo News web site article. I posted a quick answer that they are finding pressure gradients across stenosis and they are finding problems with the azygous vein, but perhaps some people have some better answers for him.

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If Dr. Zamboni's hypothesis is correct then why don't patients with MS show signs of increased intracranial pressure (which they should have if venous drainage from the brain is impeded) and why is the so-called "opening pressure" that is measured at routine lumbar punctures not increased in MS patients? Conversely, why do patients who develop blood clots in large venous structures on the surfaces of the brain (called the "venous sinuses") not develop MS afterwards? MS patients have plaques all over the spinal cord - are all those draining veins abnormal, too, and need to have an angioplasty? And moreover, there are quite a few possible explanations for iron deposits other than venous blockage.
As a general principle, 'correlation' never proves 'causation' - an extremely important point to keep in mind always.
There are many unanswered questions about this - admittedly ingriguing - hypothesis, and I applaud Dr. Zivadinov and others who will get us some answers.
And before I'm dismissed by the posters and bloggers as yet one more heartless physician who doesn't understand how patients "feel" - I happen to have MS myself for over 10 years now.
We all want to get rid of this nasty disease, but wishful thinking isn't going to get us there - we need data and proper studies. Don't just give in to the cycles of hope and fear!
Karl F. Gross, MD
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Just a couple of points

1) If it is sufficiently proved that indeed patients get benefited by liberation procedure, are we still going to wait until we nail this issue down to some mathematical equation before the intelligent people give their nod to validity of this procedure.
2) Why should Dr. Z answer every question about CCVSI?
Do we expect one person to do all the research end-to-end.
He has started a new thought process, it is for others to take this in multiple interesting directions. That is what research is all about.

Regards,

From Dr Zamboni's latest paper :

"In CCSVI, substitute circles are activated that bypass blocked veins and therefore reduce resistance to drainage, avoiding intracranial hypertension. The time of venous outflow is longer than normal, however, leading to insufficient venous drainage, as confirmed by the mean transit time measured in magnetic resonance (MR) perfusion studies, even in normally appearing white matter"

Dr Gross should read this latest paper by Dr Zamboni :

http://www.ncbi.nlm.nih.gov/pubmed/19958985

Doctors should read all of Dr Zamboni's papers related to CCSVI.

ozarkcanoer

The question about increased intracranial pressure is one that I am wondering about as well. It was the first one that my neurologist asked (she was supportive of the CCVSI idea but also asked intelligent questions).

MS is "strongly associated with MS" but apparently is not the only disease process that demonstrates venous stenosis. For instance, look at this, which brings up stenting for pseudotumor cerebri, a differential diagnosis for MS:

http://www.medhelp.org/posts/Neurology/ ... how/670281

Still more investigation to do!

I would suggest that perhaps the process of developing MS takes years after a stenosis from a blood clot, etc. And in general there is also obviously a much more complicated interplay of immune factors, lifestyle, and venous stenosis, so perhaps not everyone with stenosis going to develop MS or develop it in the time frame or in the same way -- that's clear from looking at how we all have different disease processes, different lesions, different venous obstruction patterns.

I'm so happy to be living in a time when we can take advantage of the resources of the Internet and each others' passion to solve this!

Edited to add -- I am just noting that I am just posting this for general interest. I don't pretend to understand all the medical stuff! Just there for informational purposes! Enjoy!

http://www.unique-media.tv/ogv004/?karlgross

Meet the Neuros and get inside their heads for a change.

Thanks Andrew. Sheesh I had no idea when I answered him that he was specifically a neuro with MS. Hopefully he'll pop in here and listen to these rascally patients for a few minutes...

Mark

_________________
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

Bingo. Nice work, ozark. This paper answers all of the good doctor's questions regarding substitute circulation.

We know from research that MS brains suffer from slowed perfusion and slowed mean transit time. In normal pressure hydrocephalus there are many similarities- according to Dr. Eliot Frohman in his presentation at the Bologna conference- the body creates substitute circles to avoid intracranial hypertension, but this can still damage the brain- even without an obvious increase in pressure.

The slowed transit time leads to iron deposition and hypoxic injury. Deoxygenated blood takes too long to get back to the heart. A lifetime of this creates the MS damage. It is a slow, chronic condition-
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Thanks, I'll add those to my 'simple' answer I gave him.

MS is a chronic disease but the speed of progression varies from person to person. It will be interesting to look back when the Liberation procedure has been around for a while to see if there is a relationship between the number or severity of stenoses and the speed at which someone progresses.
I suspect that there is more than one variable involved in MS but it could be that none of these would develop into MS without the involvement of poor drainage.

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Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.

First point: No doctor will ask the public questions such as these. These questions are rhetorical and asked maliciously

2. No well-intentioned doctor will ask such dumb questions

3. I don't believe for one second that this doctor has MS

4. If this dude has MS AND he's a doctor, he would know a lot more about MS and CCSVI

5. This guy is playing interference

BTW feller: High ICP isn't caused by blood, plaques do not occur where the stenosis is, and clots are not oxidative

He just wanted to make a sarcastic comment about people being sick of the medical profession. His feelings are hurt and he thinks we're impolite.

Must be quite the shock though. Have you ever watched the types that go on these TV small claims court shows? They are in utter denial when they get found out. Pathologically infantile.

Well, I'm not in any doubt that he has MS (I think his reputation might suffer if he lied about this, for a start), nor do I believe that his questions are ill intentioned. He's not dismissing the theory out of hand. I find his questions quite valid and the answers given by posters in this thread plausible also


Why do you think these questions are dumb? I thought exactly the same thing as the doctor about inter cranial pressure, for example (not from maliciousness mind you) but Zamboni's observations regarding the outgrowth of veins to compensate makes sense also. Still, I for one am happy that people ask such questions before I get angioplasty. That's just my personal choice, although MS has really messed me up and I'd rather verdicts given sooner not later.

But this doctor isn't dismissinmg the theory out of hand, but it's still only a theort

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Apologies for my terrible username. I never thought I'd use the forum much when I registered..

Without addressing the issue of whether he has a clue, or is good or bad, he does seem to be a doctor with MS. Or he's been working overtime on fabricating his cover:

http://www.unique-media.tv/ogv004/?karlgross

-d

Hi Dr. Gross,
You pose several interesting questions, that deserve the attention of a doctor or researcher that can give more definitive answers. Since I am a nurse (I do not have MS, but I do have non-enhancing brain lesions of unknown etiology and several close friends of mine have MS) I can understand a lot and think that the points you are bringing up need discussion.
My opposition to prolonged research stems from the following:
If people with MS have occlusions in the jugular and azygous veins don't those need to in the very least have to be monitored the same as occluded arteries. Are they risked an aneurysm or if the pressure gets high enough a total rupture and subsequent bleed out? So even if it doesn't resolve the MS it is still a treatable underlying condition.
As for increased intracranial pressure, I know as the brain ages it shrinks, is it possible that the increase in blood volume may just balance out the increased space caused by that shrinkage? I know that when my father had a hemorrhagic stroke the bleed just occupied space and in fact did not cause a substantial increase in pressure. Also, from what I am seeing the narrowing is not causing blood flow to totally stop which would cause a significant increase in pressure, but rather perhaps it may be slowing it down long enough for iron to leach out and cause damage. Again, I am not a scientist, but if iron molecules are such that they can readily cross the blood brain barrier or something in MS is allowing them to do so that may be the cause.
I think we are getting research and screening confused.
Research is needed to find out more specifics as to how and why this is happening.
Screening is immediately needed to identify and treat those at risk.
The bottom line is screening and identification can do no harm, not doing it can. It is also non-invasive.
BTW-do you happen to know any radiologists in the metro NY area that are using the CCSVI protocol to do screening? I have friends in NY that really want to be screened. NYU has a 7 Tesla machine that should be put to good use. I emailed them but they have not responded.
I hope that some radiologist sees this and pushes their facility to promote screenings.
I hope we all find a cure, in the meantime this is something to really consider as it is non-invasive and even if it is a genetic factor that coincides with MS that causes the narrowing we still need to find those at risk.
Michele RN

It doesn't matter, we answered the questions in an intelligent way which once again bolstered our case.

Did you post this over at the Buffalo news site? I doubt he will read it here unless he happens to pop in and become a member or something. Very doubtful but ya never know!

Mark.

_________________
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