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I've only skimmed through the Zamboni articles, and I realize they deserve a more careful reading. But could someone, such as Cheer or Marie, give a quick explanation of how Zamboni thinks CCVI is linked to the demyelination and nerve cell death seen in MS.

Is it because the venous reflux leads to damage of the blood vessel walls. This, in turn, causes a breakdown of the blood-brain barrier, allowing unwanted components of the immune system, such as T-cells and MMPs, to cross from the blood into the CNS. Then, once in the brain and spinal cord, they cause their damage to the myelin sheath and axons.

Is the basics of the argument?

patientx wrote:I've only skimmed through the Zamboni articles, and I realize they deserve a more careful reading. But could someone, such as Cheer or Marie, give a quick explanation of how Zamboni thinks CCVI is linked to the demyelination and nerve cell death seen in MS.

Is it because the venous reflux leads to damage of the blood vessel walls. This, in turn, causes a breakdown of the blood-brain barrier, allowing unwanted components of the immune system, such as T-cells and MMPs, to cross from the blood into the CNS. Then, once in the brain and spinal cord, they cause their damage to the myelin sheath and axons.

Is the basics of the argument?

You summarized it well, patient. I'd really recommend reading all the papers on this thread yourself. It takes time, but it's worth it. Every time we try and condense, we miss something. This is not light reading. The slowdown of bloodflow also creates "erythrocyte sludge" or red cell aggregation, leading to inflammation and perfusion of the CNS. Zamboni thinks that iron disregulation and deposition may be part of this as well. (The paper I wrote up last fall on endothelial dysfunction explains more about nitric oxide's function in inflammation and coagulation, too.) Lots here. Keep reading.

sou and pin- Zamboni found the damage in the brain was related to blockage in the jugular vein and damage in the spine was related to blockage in the azygos vein (located along the spine) Venous blockage creates damage up above the stenosis, because this is where the blood cannot drain back to the heart, and it distends the veins above, creating perfusion. 7Telsa MRI now shows the vascular result. The research makes sense in this respect. All of this is covered in the first 5 pages of this thread...

Once again, I'd like to request a separate CCVI thread, please.
AC

Thank you.

As i understand there is blockage (or restriction) in the return path.
So that as heart pumps blood then there is more pressure before the restriction.
I took a look where are those veins.
Since the jugular vein is descending, standing up would be better to facilitate the return path in that case.
In the other case it's the reversal since the vein is going up to the superior vena cava vein.
In both case no position is better.

If you get only the one in the azygos for example you should not experience "brain fog" for example, no optic neuritis and so on ... but may be a lot of paresthesia, "MS hug", twitches (they seems to come from the spinal cord, i was tolds ...) .. etc
Laying down would be better.

Take care.

I'm sorry that I editorialized and commented on Dr. Calabresi's favorable personality traits. I didn't realize that such comments would throw open wide the doors of sarcasm...

As for the gross generality that neurologists just won't be open to this kind of research, it's just that, a gross generality. Even a cursory look at Dr. Calabresi's voluminous published research would show that he is not only open to different theories on disease modality, but he chases them down. As a matter of fact, he's currently consulting with other doctors to see if a spinal angio would be in order for me, because of the atypical nature of my disease. He's clearly not averse to exploring the vascular aspects of central nervous system disease.

Not to say that Dr. Calabresi cannot be wrong on Zamboni's thesis, and you'll note, he didn't dismiss it outright, and only stated that most MS specific doctors generally do not consider the disease to be vascular in nature. I'm sure doctors specifically concerned with vascular diseases would find this research particularly fascinating, as it appears to be a relatively unexplored area within their specialization wide open for investigation.

As a veteran MS sufferer, who continues to battle the daily ravages of this fracking disease tooth and nail, I've seen too many "out-of-the-box" theories catch fire only to prove sadly disappointing. Call it cynicism, or realism, but these days I'm not one to sign on blindly to the theory du jour.

Multiple sclerosis, at the very least, is an extremely complex syndrome. And I say syndrome quite pointedly, because I don't believe that the entity we call multiple sclerosis is one disease. The heterogeneity of patient profiles and disease pathology have me convinced that eventually, once unraveled, multiple sclerosis will turn out to be a handful of diseases which share common traits. The differences between RRMS and PPMS are so stark, for instance, that in my opinion considering them different forms of the same disease defies reason.

I'm positive that the MS disease process does in fact impact the vascular system, just as other "autoimmune" diseases impact secondary body systems (think diabetes, and diabetic retinopathy and diabetic nephritis, neither of which shed any light on the genesis of the pancreatic disorder).

In my particular case, in addition to central nervous system dysfunction, I have atypical endocrine issues (primarily centered on the pituitary and thyroid), and atypical psoriasis. Many other MS patients also suffer from a similar array of "secondary" issues. The vascular abnormalities uncovered by Zamboni could very well be ascribed to "secondary" effects of the MS syndrome. These vascular abnormalities may be causative, may be complementary, may be reactive, or may even be coincidental, and until further research is done, making unequivocal statements in any such regard is foolhardy at best.

This board is a wonderful resource for information and intelligent discussion. Unfortunately, there's also a palpable strain of thinly veiled hostility towards anybody who dare disagree with the opinions expressed by the anointed. It's most unfortunate...

Marc...
Absolutely no hostility meant, I'm sorry if it came off that way. Really. I'm just frustrated. We need more research to see if it's possible to replicate his findings. And it's going to have to come from vascular depts. at universities.

So, you are completely right. It's complicated. And you of all people understand how messed up it is. We're on the same side. No one's anointed here...I've just spent WAY too many hours researching the venous connection to MS and posting. And I could be full of %$it, but I'd rather see this thru now than wait for the docs. I'm sorry. You're a really bright guy, and I apologize for any stepping on of toes. I'm gonna take that break until we're back from Stanford. I think I need it and other folks need a break from me too
The Apologetic Cheerleader

cheerleader wrote:Marc...
Absolutely no hostility meant, I'm sorry if it came off that way. Really. I'm just frustrated. We need more research to see if it's possible to replicate his findings. And it's going to have to come from vascular depts. at universities.

So, you are completely right. It's complicated. And you of all people understand how messed up it is. We're on the same side. No one's anointed here...I've just spent WAY too many hours researching the venous connection to MS and posting. And I could be full of %$it, but I'd rather see this thru now than wait for the docs. I'm sorry. You're a really bright guy, and I apologize for any stepping on of toes. I'm gonna take that break until we're back from Stanford. I think I need it and other folks need a break from me too
The Apologetic Cheerleader

It's been my experience that, in regards to MS, getting emotionally attached to any particular theory or treatment protocol only leads to disillusionment and disappointment. If you do a quick search and read through some of the "Tysabri wars" that raged on this board and others a few years back, you'll see that the hysterical folks on both sides of the argument were partially wrong and partially right about the drug. The same holds true for almost every new theory and treatment that comes down the lane.

We've all got skin in this game, and some of us have given up more than our pound of flesh to this disease. Disagreements on facts or theories are fine, but I will not countenance the disparaging of anybody trying their best to deal with this scourge.

Early in my MS career, I was always eager to disparage "mainstream" neurology and its inability to get the answers that I desperately wanted. I've since come to understand that not all neurologists are created equal, and to discount the opinions of the best minds in the field, and the vast amounts of knowledge gleaned by them, is to do a great disservice to myself.

Cheerleader, good luck at Stanford. I truly hope you find what you're looking for. Believe me, my fondest desires would be realized if your venous insufficiency theories eventually shut down boards like thisisMS...

is coming 2 buffalo this weekend / i have dopplers and mri s 2 do / i wish all of u could come here 2 talk with him/ dinner sat nite that i cant go 2 cause of a big final 4 party/ any 1 want 2 take my spot/ i ll fish around 4 some info though/ PEACE

Hi Wobbly,
Man! I wished I lived close enough! I would just like to shake his hand and thank him personally for doing this work. I'd probably shake his hand so hard I'd embarrass myself .

note: I have been tested by a professor of vascular surgery at my local university medical school and I have reflux too.

Dr Zamboni is giving his presentation Monday at 11ish London time on you guys he treated with the Libertion Procedure. I wonder if you will be allowed to talk about your experience after that? The CX symposium contact person told me that they have a book on this conference, in which Dr Z wrote a chapter, available for purchase, but that the slides and information will be available online after the fact. SO perhaps by Tuesday we will have a link to the information regarding what all of your MRI's look like so far and other data like that.

I hope the presentation gets written up as a published paper.

As for the little blow up on this board, I am going to comment that it is really sad and unfortunately it is a hint of what is to come on this new paradigm.

There are going to be a lot of expert neurologists who come out claiming they have evaulated it and that they deem it unlikely and probably not something to consider.

At this point in time they are right! Even if they mischaracterize the conclusions a little bit and do not understand it as well as they might.

If you can find someone to test you, as I did, and if you have reflux, as I did, there is no accepted model YET for what to do with the information.

We do not know YET if treatment will help. We do not know what the best treatment will be. Will it be stents? decided on a case by case basis? And after the treatment will you need regular MS medicines? other medicines? We do not know these details.

the Liberation Procedure will give us some idea of how treatment will work, and as other people other places try something similar, their data will be published too, but all that is in the future.

But at this point in time any responsible neurologist is going to try to get any patient bringing this paper to them to understand that we can't make treatment decisions based on this "too new" idea yet, and redirect you to something more standard. It is not ethical to experiment on people, nor do they want to get people's hopes up for something unproven.

A neurologist has to be the last bastion of "only what is proven". They aren't going to endorse worms, swank, high vitamin d, hicy, or fish oil either

Unfortunately I predict an immense push back from the powers that be, there is much too large a pharma pipeline and far too many available treatments that will design studies to show this is probably not an issue, even if it is there.

I predict several studies with dopplers alone, showing very mild reflux, and claiming this has to be insignificant, or expert comments that make that same argument, as well as expert opinion that outlines a hypothesis for how MS causes this after the fact and studies that show only one abnormal in many MSers instead of the Zamboni team's 2 and thus calling that work into question.

There may be doppler studies done in which people are tested with the valsalva maneuver, which the Z team specifically avoids, and in such a case normal people will fail very often, muddying the results to something like "we tested people for reflux and found 40% of normal people and 65% of MSers have reflux. Conclusion reflux is not pathognomic for MS." People who do not read that paper carefully and do not understand the Zamboni team's work well will not understand why the conclusion is so different than the "100% concordance" in the Z papers and they will find the original work suspect, not the new paper. Why? Bias that this can't be right because it is too different from what we "know".

Science is like this, it goes back and forth, get ready for the back part....as in "back to regular autoimmune theory".

The only thing that would stop that happening is if treatment results in very dramatic unequivocal reversals of MS progression, and I do not think (I hope I'm wrong) that is likely because the MS lesion area, even if it is caused by this paradigm, is still going to be full of all kinds of cytokines, iron, germs etc that do not belong there.

Any healing that can take place will take time, and the patient will likely still have residual damage, just like after a stroke or after polio. It may require that people use drugs like copaxone or something to make sure any autoimmunity that happened after the fact is cleaned up, or antibiotics to clean up germs that got in, or antivirals for EBV.

If it is proven, it will take some time before all the ramifications of this new understanding, that people with MS have CCSVI, are understood.

It will actually take years for this to play out.

But this board is full of excitement about new treatments. People speculate all the time about Goat serum, Tovaxin--shoot, there's even grass roots efforts to get more cyclophosphamide production, yet all over the country people are being told by their own neuros not to do it because that is as yet not proven as well.

We aren't all about proven treatments on here, we can hang out at Shared Solutions, the board for Copaxone that is moderated by Teva, if we want proven therapy group think. TIMS is all about options, keeping our eyes open and being as proactive as possible.

For some of us it is useful to have new options because otherwise we have nothing.

But do I think it is important people have a clear understanding that this is really early in the game for this new idea. There are lots of unknowns.

Marc's doctor was only being responsible...

Marc only wanted to make sure other TIMS members knew this is not a done deal...so they did not mistake the excitement about this idea on this thread to mean it is proven when it is not.

But in spite of all that, people who like this idea would like to be free to read the literature and discuss anything they find that is related to this material without people who have merely skimmed it or who have only the most tangential interest in it shooting it down. I think that's fair and it is the TIMS standard.

Peace.

I got the impression that no decision to correct your dx reflux? Is it true? Even if it has nothing to do w/MS shouldn't action be taken? Is it not that big of a thing and will not cause harm in itself? I myself would be worried...

Hi Holly
Yes this is right I have reflux but we have not decided what to do. It was relatively "mild", not a severe complete blockage so I am no more than "mildly" worried

That is the problem of getting tested; what do you do with the information?

My doctor is talking to colleagues...VASCULAR doctors with expertise on veins, not neuro's....including an email to Dr Zamboni. He is forming a plan for me and he told me to give him a "few" weeks. It has been 18 days. I am on pins and needles, it could be anything from "Yes you do have reflux but we do not have any good standards of practice for treating this therefore we will have to do a study and a University ethics committee will have to decide IF we can do this"....to "You have reflux and we will treat it like any other patient with such an issue, come in on Tuesday."

I just have no idea where it will come in on that spectrum.

I am proactive myself, I know what I want and what I believe. If this doctor is not comfortable going forward I will look to Cheer's doc. If she gets a more complete answer, as in "including treatment", then I will be there with bells on, plane ride and all.

I don't have 5 years to wait for this to work its way through the regular channels. I can barely walk as it is, the wheelchair is not too far off. I have only bad and worse options pharmaceutical wise because I have no inflammation. Even considering some risk, I am grateful to have this.

In a way those of us who have decided to pay to have the dopplers are in a "trial" of a kind. This is not generally available, and having an "answer" is not exactly a cut and dried thing. Good reason not to rush out and try to get this yet.

Paper to puruse, offered by a friend
FOUND HERE

the whole paper is available at the free link

Thermoregulatory system. Recently, one study has assessed the thermoregulatory center and its impact on multiple sclerosis (3). In this study of a single subject with a history of multiple sclerosis and thermoregulatory dysfunction, temperature thresholds were calculated as the core temperature was slowly warmed to sweating and again as the core temperature was gradually cooled to vasoconstriction and shivering. It was found that the sweating threshold was a full 1°C higher than normal and the vasoconstriction threshold was 2°C below normal, making the calculated sweating-to-vasoconstriction range fourtimes the normal amount. The shivering threshold was also lower than normal (31.8°C), making the vasoconstriction-to-shivering range more than twice the normal amount. Providing such information may sound academic and simplistic; however, this may be an important point to those with multiplesclerosis, altering them to the extent of dysfunction, and to others like caretakers and insurance companies, alerting them to the hazards of increased body temperature and the need for cooling devices.

Cranial radiator. The brain is one of the most metabolically active tissues, generating large amounts of heat. Dissipating this heat as well as heat absorbed from the environment has been a major evolutionary hurdle, one that was necessary to overcome for the continued development of the brain and the evolution of humans. Simply put, the brain, like the automobile engine, could not increase in size without the simultaneous development of an adequate cooling system. The brain was constrained and could only develop in parallel to its "cranial radiator" (2). However, for many with multiple sclerosis, the cranial radiator is simply not adequate.

The evolution of emissary veins solved this problem and removed any restraint on brain development. According to this theory, a vascular network in the scalp and face developed with veins draining through emissary veins in the skull joining the meningeal veins and sinuses of the dura mater. From the dura, venous blood drains to veins within the brain, thereby removing heat from the brain. With heat stress, the venous plexus on the face and scalp dilate, promoting heat loss by conduction. In addition, secretomotor pathways activate sweating, further cooling the blood by evaporation. Thus venous blood, the temperature of which is lowered by conduction and evaporation, percolates back to cool the brain (2).

The brain is cooled by the emissary veins we've touched on this in this thread before, but it is worth noting again. the next post is why(edit 2 posts down! I was not fast enough!)

marie---- keep the hope--stay fighting--every1--this deal is 4 real--PEACE

I was contected in PM by a person who has had the liberation procedure. That person asks to remain anonymous but wanted to share several things for people interested in this in general.

This is anecdotal, meaning not scientific but one person's report of how they feel they are doing.

According to Anonymous:

The procedure is easy to tolerate not a big or difficult deal. Anonymous would choose it over a trip to the dentist.

Afterwards as a result A. has no more dizziness and the head feels a lot "better" in general

also no more heat intolerance; where as before after working out would require putting the head in the gym bathroom sink and running cold water, those days are gone, regular gym workouts go with no heat intolerance. This is the biggest change in A's life with regards to the Liberation procedure, no heat problems.

Anonymous says there has been no dramatic change funcitonally, but the lesions are all spinal so that was not expected. Anonymous sometimes uses a cane for distance, otherwise "gets around all right".

A plans to re-treat as necessary, and apparently was told the venous repairs tend to need re doing with time.

I was told this also by the professor of vascular surgery that did my dopplers too, these kinds of repairs tend to block back up. Venous repairs are not as well understood as arterial (think heart patients)

for what it is worth, Anonymous's lay opinion is that this will be a standard part of MS care. A has noted no progression of symptoms, though it's only been 8 months, but that was felt by A to be significant.

Anonymous also spoke very highly of Dr Zamboni and the team and were extremely impressed by him and his clinic.

So that's the "please post something for me anonymously" post of anecdotal information for those of us interested in the possibilities here.

thank you kindly to the person who wanted to share with us.

Thanks Wobbly

There are a lot of people following this thread and not posting. Some are actually researchers.

I am excited for this to go forward as much as anything else because the treatment is so different from traditional, therefore it is more important than the usual "Is hicy better than Campath" or is "copaxone better than interferon" type debate we usually end up having in the MS research world; it is not "almost as good" to get something like hicy if CCSVI turns out to be a crucial part of the MS puzzle.

That having been said, I used that as an example, for all I know we will need an immune system reboot too......... a kind of "Both and" type of treatment.

mrhodes40 wrote:Paper to puruse, offered by a friend
FOUND HERE

the whole paper is available at the free link

Thermoregulatory system. Recently, one study has assessed the thermoregulatory center and its impact on multiple sclerosis (3). In this study of a single subject ....
.................. evaporation. Thus venous blood, the temperature of which is lowered by conduction and evaporation, percolates back to cool the brain (2).

The brain is cooled by the emissary veins we've touched on this in this thread before, but it is worth noting again. the next post is why

It looks I'm close to be MS diagnosed ...
In October 2006 (when all the nightmare begun ...)
- Stop sweeting as usual during exercise
- Heart was not bumping as usual with the same exercise
- Constipation

This sweating-to-vasoconstriction range could be easy to measure.
One more stone in the diag.

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It looks that the liberation operation is working.
Obviously, if some damage are irreversible .... but it's only 8 months.

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This tread is a MUST

Take care