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Apparently, detecting these venous stenoses in living people has become possible only recently. Admittedly I have no clue what goes on in an autopsy, but it seems reasonable that such a stenosis would be easy to see in that setting.

Hasn't the history of MS research included numerous studies involving autopsies? So if CCSVI is closely associated with MS, why didn't the correlation become apparent a long time ago?

(I'm trying to be a critical thinker, not a wet blanket.)

Rokkit

Rokkit wrote:Apparently, detecting these venous stenoses in living people has become possible only recently. Admittedly I have no clue what goes on in an autopsy, but it seems reasonable that such a stenosis would be easy to see in that setting.

Hasn't the history of MS research included numerous studies involving autopsies? So if CCSVI is closely associated with MS, why didn't the correlation become apparent a long time ago?

(I'm trying to be a critical thinker, not a wet blanket.)

Rokkit

Good question, rokkit. Dr. F A Schelling noticed venous anomalies in MS patients at autopsy back in the 1970's in Austria, and wrote about the venous connection to MS. Here's his webpage where you can get his book for free. Check it out. He writes about the history of lesion study...docs have seen this correlation since the early 1900s. Search Schelling on TIMS to read more about our discussions of his research.
Neurologists followed the path of Charcot...stuck to studying the brain alone, without connection to the body as a whole, and have missed the forest for the trees. It's been here all along.

The story began in 1973, at the University of Innsbruck, when F. Alfons Schelling, M.D. began investigations into the causes and consequences of the enormous individual differences in the widths of the venous outlets of the human skull. The results of this study appeared, in 1978, in the official organ of the German-speaking Anatomical Societies, the "Anatomischer Anzeiger".
F.A. Schelling's 1981 discovery, at the Hospital for Nervous Diseases in Salzburg, of a striking widening of the main venous passageways through the skulls in victims of multiple sclerosis were to occupy the author's thoughts through the following decades of his quite diversified medical career. And in putting together, bit by bit, all the observations on the venous involvement in the emergence of the specific, and, in particular, cerebral lesions of multiple sclerosis, he was able to recognize their causes.

http://www.ms-info.net/evo/msmanu/984.htm
cheer

I think I'm going to have difficulty convincing my neurologist of the whole CSSVI model... her reply regarding my sending her information about it was:

"There is no solid evidence for this theory. There have been countless autopsies, MRIs and so on, no venous blockages ever found."

Since I live in Canada, does anyone know how I might go about getting a referral to Stanford to get checked out, or would it be possible to get checked our here somehow to send the results down there and then travel for surgery if anything is found..? Or is it just better to wait for more study results and hope the treatment spreads to other hospitals?

It's my understanding that a normal MRI wouldn't pick that up anyway, you'd need an MRV (same machine, different software) - that in itself would lead me to question my doctors recent knowledge of this.

This is just my vote, I'd wait unless you are so aggressively getting worse that you can't.

MRI's do not show venous blockages so that comment makes no real sense. She simply is not going to accept t his model until it is proven to her and she will get there with enough evidence. Doctors pride themselves on their scientific approach and saying "THis is unproven" is always acceptable, particularly when the idea is new and different. NO one can ever fault them for doing that, however there can be ridicule, error and wild goose chases if you look at something from a logical point of view and decide it may be "real" ahead of the avalanche of "everybody" agreeing the new idea is right.

According to this paper available for purchase (clickable)
False Trivial Obvious, Why revolutionary ideas are typically disrespected

abstract:Summary An old joke about the response to revolutionary new scientific theories states that there are three phases
on the road to acceptance: 1. The theory is not true; 2. The theory is true, but it is unimportant; 3. The theory is true, and it is important – but we knew it all along. The point of this joke is that (according to scientific theorists) new theories are never properly appreciated. The ‘false’ phase happens because a defining feature of a revolutionary theory is that it contradicts the assumptions of already-existing mainstream theory. The second ‘trivial’ phase follows from a preliminary analysis which suggests that the new idea is not in fact contradicted by the major existing evidence, but the new theory seems unimportant because its implications do not seem to lead anywhere interesting when explored in the light of current theory. A stronger version of this second phase happens when the implications of a theory are regarded as not merely unimportant but actually dangerous, because a scientific revolution is certainly
destructive (especially of established reputations) yet its potential benefits are conjectural. However, once a new and revolutionary theory is in place, its importance is ‘obvious’ such that it becomes hard to imagine how anybody could ever have believed anything else. Theory for scientists is like water for fish: the invisible medium in which they swim.
Observations and experiments, on the other hand, are like toys in the fish tank. New toys are attention-grabbing; but when the tank gets cloudy, its water needs changing.

Thanks for the insight, you're right she does have a strong sense of relying on scientific proof before recommending anything.

I suppose I can wait some more, I just had my first attack in Oct and my first relapse a few weeks ago... just slightly anxious and hopeful for any new discoveries I read about

daniel wrote:I think I'm going to have difficulty convincing my neurologist of the whole CSSVI model... her reply regarding my sending her information about it was:

"There is no solid evidence for this theory. There have been countless autopsies, MRIs and so on, no venous blockages ever found."

I'd like to know how true this is. Maybe the reason they didn't find venous blockages is that the medical examiners weren't looking for them. This statement is a classic catch-22. There's no evidence for the CCSVI theory, but we won't investigate to try to get some evidence because there's no evidence.

I just don't understand this reluctance not to look into the CCSVI possibility; how neurologists are just dismissing it out-of-hand. If they would do studies into it, and determine that it has nothing to do with MS, at least they've determined one thing doesn't cause MS.

just slightly anxious and hopeful for any new discoveries I read about

I don't blame you a bit! Here's something though I wish I had known when I was first diagnosed: most people are fine for some years, I could still jog at 6 years in.

Take good care of your overall health, investigate healthy vitamins and minerals (TIMS has some awesome people like Jimmylegs who have the real scoop on that stuff) and get some exercise to maintain your current abilities. It is most likely you can afford to let this get more well accepted.

I actually envy you the early phase, though I well remember the almost crazy fear you feel in the beginning. Please know that the average person with MS only reaches a EDSS of 3 at about 15 years. That would be a mild disability in three systems (something like a mildly weak hand weak leg and a slight visual disturbance) or a severe disability in at least one (say severe eye issues). While I know you don't want any of that, it does mean you probably have some time... We'll know about this new idea in a year at the latest when the liberation 100 results are released.

Until then more work out of Stanford will flesh out the research by offering another institution with collaborating evidence. Dr Simka is getting a study going in Poland too.

it is all good! Be at peace
marie

Daniel-
Here's one for your doc:

Venous Congestive Myelopathy vs. MS
A patient diagnosed with MS is found at autopsy to be one of three
patients to have venous congestive myelopathy-

In these three patients, common symptoms were gait disturbance and sensory disturbance of the extremities, and these symptoms slowly worsened. The clinical diagnoses varied and included spinal cord intramedullary tumor, cervical spondylosis and multiple sclerosis. At autopsy, all the patients showed enlarged, tortuous venous vessels on the dorsal surfaces of the spinal cord at the affected levels. In the affected spinal cord parenchyma, necrotic lesions manifested by various degrees of neuronal loss and gliosis, with increased numbers of hyalinized vessels, were evident.

The reason this is not found at autopsy in MS patients is that it is not being looked for. That will change. Marie's right, if you have time and patience, keep your eye on this...the research will continue. However, if you are curious...fight for an MRV or venography or CAT with contrast and have your jugular and azygos veins scanned. My husband is grateful that he followed thru with his curiosity.
cheer

This statement is a classic catch-22. There's no evidence for the CCSVI theory, but we won't investigate to try to get some evidence because there's no evidence.

right on px.

Read the Schelling book link on the sticky research thread, the evidence is there they just have not appreciated it...

ANd I also believe not looking is right too. My grumpy doppler lady is a good example in that she said BEFORE WE STARTED that this whole idea was a waste of time because it was impossible. The DOPPLER lady. what ax does she have to grind? Yet sure enough she saw mothing proving that she was "right". Never mind the MRV showed her to be wasting not only time but money by producing a useless diagnostic... remember Dr Simka reminds us that dopplers are very operator dependant so such a person can "see" whatever she expects. Makes you think abot all our science......... how operator dependant is the rest of it?

Marie,

what is the test that they do at Stanford. Is it widely accepted as a 'conclusive' test?

I've been catching up with all this and it makes a lot of sense. Even if it's not a direct fix for MS, surely you'd want the problem fixing anyway?

Did you need a referral or just contact them directly?

Thanks

Jamie

They did an MRV so an MRI with contrast that looks specifically at the brain, and it is as diagnostic for vein issues as an MRI is for MS...it is a very clear picture.

Here's a link to MRV pictures........http://www.tosinfo.com/mri/images/img_gallery.html

On the bottom row see the MRV images. A doppler looks at the blood flow but it can't see the veins . IT draws conclusions about what MIGHT be going on in the vessels based on how the flow looks. MRV looks directly at the veins, but it is more expensive and not available everywhere, and apparently it too can have false negatives, I have mentioned that my jugulars were flattened to the back so that from the front they looked as wide as the rest of the vein, it was on the MRI we could see the tiny slit they actually were, and when Dr D had the MRV digitally turned it was very obvious that from the side view they were smashed flat. I wish I could post them, but they'll probably be in the research paper later.

I am glad I had my jugulars fixed, though I am getting blank stares from some people. I had a CT scan this morning of my abdomen and the radiologist was completely flummoxed that I had JUGULAR stents he was sure I had CAROTID stents and just didn't understand because there is never any need to do jugulars.

I'm pretty sure the general agreement is that jugulars can be blocked and it is probably just fine because all the collateral veins can take up the slack, ie so the vertebral veins are all congested, so what, the blood still gets out so what's the problem? no one takes time to step back and question that such congestion may have a negative impact on the most delicate organ in the body. thus we see the confused attitude.

I just agreed that I may be confused and went on my way..........
No need to convert random people like that.

Someday he'll know of this and be sitting there and wonder to himself if that wierd lady from back then DID have jugular stents like I said I did....

i was speaking to my mother in law this weekend and realized that i read about some dr's in new york a couple of years ago that did autopsie's on ms patients when they died. one thing was common. in all of them the lesion formed right next to a vein. i think i was doing reseach on diet and ms. i will try to find the article. interesting none the less.

patientx wrote:I just don't understand this reluctance not to look into the CCSVI possibility; how neurologists are just dismissing it out-of-hand. If they would do studies into it, and determine that it has nothing to do with MS, at least they've determined one thing doesn't cause MS.

It's because neurologists are practitioners, not researchers. As such, they aren't going to wander too far (if at all) from the "standard of care."

Rokkit

Hutto wrote:

about some dr's in new york a couple of years ago that did autopsie's on ms patients when they died. one thing was common. in all of them the lesion formed right next to a vein. i think i was doing reseach on diet and ms. i will try to find the article. interesting none the less.

That would be really cool if you found it...crossed fingers here

rokkit wrote:

It's because neurologists are practitioners, not researchers. As such, they aren't going to wander too far (if at all) from the "standard of care."

sad but true