This Is MS Multiple Sclerosis Community: Knowledge & Support

you're right, CureIous.

In addition to all well responded here we should remind griff that CCSVI was unanimouly given medical entity by UIP (International uni0n of Phlebology, 65 country members) in last january 2010.

Blood flow to most organs is autoregulated. If perfusion pressure (blood pressure) drops, arterioles, very small arteries that act as the valves of the circulation, dilate, reducing vascular resistance and blood flow stays constant. This mechanism acts only over the physiologic ranges of perfusion pressures.

Cerebral blood flow has been studied in MS patients and it is normal except in areas of the white matter damaged by the disease in which one would expect reduced metabolism. The same is seen in any chronic brain disease that reduces cell mass and/or metabolism. Certainly, reduced cerebral blood flow is not the primary cause of MS.

http://www.ajnr.org/cgi/content/abstract/26/6/1539

Zamboni is well aware of this basic physiology but gets around it by hypothesizing the existence of a phenomenon he calls "reflux", that somehow damages only the white matter of the brain in MS patients and is eliminated by "liberation".

HP--I'm sorry about the insurance issue--but I have no jurisdiction over private insurance companies. Neither does a group of volunteers with MS who pay for their own travel. Jeff and I have donated thousands to CCSVI Alliance, and continue to raise funds and host a website with all of the research. www.ccsvi.org We're doing the best we can by convening doctors and hosting informational events, but this is an up hill battle....and I completely understand the frustration and we'll be talking about this issue next phone board meeting.

Hello Dr. Rose!
We have a wonderful thread underway on hypoperfusion, ischemic injury and the MS brain. It has peer-reviewed research papers and plenty of information on how there is hypoperfusion in NORMAL APPEARING WHITE MATTER (NAWM) in MS brains. It is not about lesions or brain damage affecting Cerebral Blood Flow (CBF) I find it's always a good idea to link to peer-reviewed research when making a comment on these threads, since that's the only way to note what researchers, not bloggers like me, have found.

Here's the thread:
http://www.thisisms.com/ftopic-7708-day ... ion-0.html



http://www.ncbi.nlm.nih.gov/pmc/article ... ool=pubmed
cheer

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

Here is another peer-reviewed research paper on how the brain's autoregulatory mechanism for maintaining adequate perfusion can be affected due to carotid artery stenosis--there is a lack of cerebral reserve. This might be the cause of perfusion changes if the cerebral blood outflow is slowed by venous stenosis:



http://www.ajronline.org/cgi/content/full/175/1/207

Stenotic vessels affect perfusion time. They change the autoregulation function you refer to. The brain lacks a cerebrovascular reserve capacity when stenotic vessels slow CBF.
cheer

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

@MegansMom
I think many of the arguments are still repeated many times by doctors, IRs, vascular specialists, neuros, neuro surgeons. Just to name a few whom I talked to in the last couple months. Also, many of us have not been here in tims a year ago and not spent too much time dwelling into MS theories as we tried to live our lives when we still could.
I certainly do not state that I understand the theory when well respected vascular specialists whom I talked to do not undesrtand it. The coin has two sides. What kind of info could I collect before my procedure? There were the Dr Z's stamenets that operation has no risk and many people had improvements (only anecdotical reports), mainly those who are in an early stage. The other side said what I just posted. So, I deciced I have nothing to lose and I got the operation. It was done by small balloon, just as Dr Z did originally. My vascular specialist said that he finds it risky to use large balloon or to destroy valves (so he just dilated the valves). Life justified him as now even most of the IRs refrain from large balloons. No, improvement, only deterioration. So, I started talking to specialists here in Europe who are independent. They are nice guys not influenced by any money group. Most of them studied CCSVI, but they are still not convinced. So, this is why I think it is quite condescending when I hear someone talking about CCSVI or CCSVI and MS link as a fact.

By the way, what theory are we talking about? Dr Z seems quiet about his theory. His original one was already refuted. First, he said that iron deposits and reflux cause damge in our brain. Now, he sais that it is a multifactoral thing. Which means he has no theory at all.

In most of the European countries CCSVI is not accepted as an illness that should be treated. This is why our insurance does not cover these operations. By the way, did IRs say anything about getting into a worse condition that might require more and more operations? Those of us who are paying these operations out of pocket might get f..d up due to the opeartion.Believe me, I am very happy to hear that. On the other hand I am just wondering what her symptoms were before the operation. Does she have RRMS, I guess? I have to admit that I have also symptoms that go away sometimes for a few months, but the only hard issue I think is mobility. I have RRMS patients friends who do nothing, no medications, no operation, etc., but even a few years after their diagnosis, they live as normal people. They dance, sport, etc.

Even after the operation I thought that I feel some improvement, but if I see things more critically, I have to admit that I had before and even today days, weeks or months when I feel better and sometimes worse. That is the nature of MS. With RRMS patients even if you do nothing you might have no significant problems for more decades. My neuro also talked about placebo and nocebo many times. He is of the opinion that just the fact that you tell a patient that she has MS will cause deterioration in her conditions. I fully agree. Mind is over matter. He thinks that doctors hurt the most with their mout. I am in an early stage, but mobility problems did not change just got worse after the operation. As I said the specialists (not neuros) whom I talked to and who examined reports of CCSVI clinics in Europe told me that they did not find any scientifically documented improvements of patients, only anecdotal stories. So, I am just wondering the validity of those numbers. An IR can validate the condition of a vein but he has no idea about neurological conditions.

Another issue is safty. Once large ballons are applauded, then they are dangerous. Once, breaking annulus is a good thing, then it is dangerous. So, lets make a good decision. We already saw too many people having problems with veins, so I do not like hearing when people are saying that angioplasty has no risk.

@cheerleader re

I had seen that study. Even if were properly done (there is some doubt about the blinding of the observers) it only raises the possibility of MICROVASCULAR abnormalities in NAWM in MS.

"In summary, our findings suggest that DSC pMRI may reveal widespread microvascular NAWM abnormalities which are more marked in the PP-MS and may be clinically relevant. "

"CCSVI", if it exists is macrovascular, not microvascular. It would have to affect TOTAL cerebral blood flow. There is no way it could selectively affect white matter blood flow. And, as I said before, any significant reduction in total cerebral blood flow would cause unconsciousness before ever affecting the white matter.

So, this paper is irrelevant to a discussion of "CCSVI".

@cheerleader

The authors discuss localized measurement of blood flow in brain tumours and in ARTERIAL disease (strokes). The stenotic vessels to which they refer are arteries, not veins. Autoregulation of localized cerebral blood flow due to obstruction of arteries is irrelevant to a discussion of blockages in veins which could not affect blood flow because of extensive venous collaterals, unlike arteries.

"CCSVI", if it existed, could only affect TOTAL cerebral blood flow and could not possibly affect local blood flow to white matter.

I'm talking about trying to save people from great harm when they restenose and can't get coverage for another procedure.

When is the phone meeting? Perhaps you could shoot off a proactive email today to the board asking members to start working now on ideas so they can be finalized and put into action during the phone meeting -- ideas such as already having talking points written, having sample paragraphs/letters written, having a mock-up of the web page done, having strategies to encourage/enlighten doctors and doctors' associations to help, having informational materials designed to hand out at "informational events," and having already thought about lots of other ideas to implement ASAP.

@HappyPoet

How do you define "restenosis" and what is the "great harm" someone with it faces. The insurance companies will ask will ask for scientific proof of these allegations. If symptoms keep recurring throughout the life of an MS patient whose disease is presumed to be caused by "CCSVI" is the number of "liberations" on one patient and their cost unlimited?

As a doctor, I'm very surprised you don't know what restenosis means and what harm, great or otherwise, can happen because of it. Insurance should pay for correction of symptomatic CCSVI whether or not a person has MS. The cost of repeated angioplasty treatment for CCSVI is much less than the cost of repeated DMD treatment for MS, but that comparison is mixing apples and oranges. Insurance should pay for both treatments if a person happens to have both symptomatic CCSVI and symptomatic MS. Period.

Edit:

I don't understand what you mean by costs being "unlimited." No matter what an MS patient does, it will be expensive and insurance companies calculate for these costs in their actuarial studies.

When an MS patient goes off the uber-expensive DMD Tysabri, which insurance pays for, there can be a rebound effect with horrible, expensive consequences which insurance pays for. I won't even get started about the costs associated with PML.

When an MS patient goes off the expensive chemo Novantrone, which insurance pays for, there is a 10% risk of cancer and a risk of major heart problems, all of which are very expensive which insurance pays for.

I could give even more examples ... MS is expensive.

BUT the paradigm of CCSVI offers a possibility that none of the other treatments offer -- relief from symptoms... relief that, for 50% of MS patients who undergo CCSVI angioplasty treatment, can last for up to 18 months as shown in Dr. Zamboni's published, peer-reviewed study.

For those of us who have failed all other treatments, CCSVI angioplasty offers more than just hope. For me, CCSVI angioplasty improved my vision, which is PRICELESS for obvious reasons, and gave me back my balance, which is also PRICELESS -- no more bumps, bruises, nor broken bones!

As a doctor, I know that even total occlusion of both internal jugular veins causes no harm. The paraspinal veins are quite capable of handling the venous outflow via the emissary veins. So, again, what do you mean by "restenosis" causing "great harm"?

Insurance companies pay for those drugs because there are randomized controlled trials showing acceptable risk/benefit with proven slowing of disease progression. There is zero scientific evidence for the benefit of "liberation" in slowing disease progression. Anecdotes of subjective improvement don't count as scientific evidence. So even if the risk of "liberation" is small there is no reason to take it without any scientifically proven benefit on disease progression.

See these references.

http://dl.dropbox.com/u/4089353/HeadNec ... amboni.pdf

http://dl.dropbox.com/u/4089353/TurkNeu ... lusion.pdf

Of the veins only occlusion of the superior vena cava can cause an increase in venous pressure in the head and that would be obvious from facial edema of which MS patients have none.

Harm, great or otherwise, would happen if my IJVs restenose again... my vision will become poorer yet again as will my balance yet again. I've learned about venous insufficiency -- that it can, indeed, cause harm.

I don't know if my CCSVI is related to my MS. I don't know if my CCSVI is related to the size of my feet. But I do know that my CCSVI does cause me harm.

@happypoet
"CCSVI" is not based on science, it is surreal. We cannot hope to understand "CCSVI". It cannot be studied by the scientific method.