A doctor's questions re: CCSVI

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

Postby cheerleader » Sun Dec 27, 2009 7:01 pm

bluesky63 wrote:Maybe a medical person person (or savvy other person) can answer or speculate on this -- is it possible to have relapsing-remitting stenosis? You understand what I mean? In other words, if we image the veins over periods of time, would the degree of stenosis be variable, the way lesions are, and would that perhaps account for the differences in symptoms and lesions and disease course? Someone here has already had that experience if I am remembering right -- the first visit to Dr. Dake did not show stenosis but a later visit did.


Skydog did have an area of stenosis that was not as pronounced on his first visit to Stanford as it was on his second....I think this is a great question, bluesky, and more research needs to be done.

Dr. Zamboni has a hunch that a venous abnormality might be present at birth and that some outside factor (stress, virus, toxins, bacteria, etc) may further exacerbate the stenosis be creating endothelial (lining of blood vessels) disruption and worsen reflux. Or maybe a different neck position/postural change might also make the stenosis worse. This situation might create what we call a relapse. Dr. Zamboni and his team are studying endothelial disrupters and their affect on stenosis now.

The good news on this, if it is true, is that lifestyle, diet, nutrition, exercise, posture, etc. can have a very positive effect on the relapsing remitting types of venous occlusions....which is probably why those with less stenosis are able to keep their MS from progressing with changes to the endothelial disrupters. Also why some people can swear that their diet changed their MS...for some lucky ones, this is possible.

The less good news is that the congenitally absent veins and higher jugular stenosis we are seeing in more progressive MS is more difficult to treat and will require vascular surgical expertise.

Perhaps in the future each individual MS patient will get a print out of their type of occlusion, and have an individualized program for their situation....lifestyle, exercise, medication, postural changes, surgical intervention, endovascular ballooning and stenting. The veins can be monitored with doppler technology to make sure the stenosis is under control and blood is flowing correctly. I can dream....
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Jugular » Sun Dec 27, 2009 8:51 pm

CureIous wrote:Nice name, where did you come up with that idea? ;) ;)

I highly doubt that a physical reality like occlusion, reflux, stenosis and the like is going to be adversely affected either way by immune modulating drugs. This should be a lesson to all of us, that your mileage may vary, everyone is different, nobody, up to and including those who've been treated, is recommending to dump any/all drugs, or even HINTING at that, which of course would constitute medical advice. Sure, that may well be in the future, but the future is not here yet. Some stayed on the drugs, some didn't. We may need both avenues in the future, who knows. I sure don't.

Very good post jugular. Keep em coming. Thanks.

mark

Thanks Mark! I was surprised that the name was still available.

karlgross wrote:Dear "jugular":

I agree with you - nearly entirely.

I'd like to convince you that what seems to be the "seemingly incessant sub-specialized esoteric academic wheel-spinning" of MS-researchers is exactly what comes up with the new ideas - including the whole "vascular/venous" theory of MS-etiology! The mutual dependence of empirical data and theoretical models drive the whole thing forward, and both aspects are equally necessary.

Best regards,

Karl F. Gross, MD


You're a trooper for trying to respond to all of us. But you don't have to, since we are not your patients. I don't intend this sharply, but rather to attempt to persuade you to find a more manageable way to continue participating.

I agree. Even Dr. Zamboni's discovery started with a hypothesis. But he's produced some rather startling empirical data in support of it. The first step in my books is to try and validate the data. However, many neurologists seem to be responding by denouncing Dr. Zamboni’s empirically-based findings with theory instead of facts. This makes no sense to me.

You raise some very interesting and important questions about how such a revised model is challenged by previous epidemiological studies and so forth. These can be left as questions for others to answer. Or you can pitch in by applying your considerable learning and intelligence into answering them yourself. Perhaps you won’t be motivated to do so until the “experiments” are validated by others.

In the meantime, I'm much more pragmatic. I don't care if it makes sense. It just has to work!

All the best!

-Jug
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Postby Jugular » Sun Dec 27, 2009 8:53 pm

cheerleader wrote:Perhaps in the future each individual MS patient will get a print out of their type of occlusion, and have an individualized program for their situation....lifestyle, exercise, medication, postural changes, surgical intervention, endovascular ballooning and stenting. The veins can be monitored with doppler technology to make sure the stenosis is under control and blood is flowing correctly. I can dream....
cheer


Word.
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Postby karlgross » Sun Dec 27, 2009 11:10 pm

Johnson wrote:
karlgross wrote:
I am curious about the vasculitis idea. What might be the vectors for such? Could Lyme Disease (or other spirochetes), infections of the gut (Amoebic Dysentery, Giardia, Cryptosporidium, etc.), be antagonists? Could additives (Thimerosal, Polysorbate 60, and others) and/or adjuvants, contaminants such as SV40 in vaccines be implicated? Almost rhetorical questions, but I have wondered...

I have often considered that "my MS" was perhaps parasitic, or infectious, at its root (patient history). I intuit that it is more complex than that, but just as anything will come to a critical point before it begins to dis-integrate, I have always wondered at the complexity (or, perhaps, simplicity) of the tipping point in MS presentation.

Er, sorry if that is all unclear.


Dear "Johnson":

The word "vasculitis" itself is simply a generic term for "blood vessel inflammation." But in medical usage it generally refers to a primary inflammation of small arteries (ie, no specific other cause, such as an infection, known).
"CNS-vasculitis" seems to be mostly limited to the brain. It is quite a different disease - and not a cause of MS! Sometimes it needs to be "ruled-out" before a diagnosis of MS is made...

"Complexity" - in the technical sense of the word - is quite an appropriate description of the physiology and pathology of the body; and that's precisely the reason it can be so difficult to figure out things like MS ...

Best regards,

Karl
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Re: Inclined Therapy for people with ms

Postby karlgross » Sun Dec 27, 2009 11:32 pm

AndrewKFletcher wrote:Before you go Karl,

I have sent a pm to you relating to Inclined Therapy / postural therapy and all of the reports on the forum from people trying it and noticing a huge difference.

The two main threads can be found under the heading Inclined Bed Therapy.

I have exchanged emails with Franz Schelling and Paolo Zamboni, who have responded favourably, yet doubt the veins can return to normal function using this simple technique.

If this is true then there is another part of ms that cannot be addressed using surgery. We cannot ignore these posts! More an more people will be waking up to a day when their ms symptoms are no longer a problem, failure to address this is going to leave a huge black hole in Zamboni’s theory.

There is obviously more to addressing the damaged myelin, optic nerve and brain tissue than sorting out the restricted bloodflow in the main circulation. What if the circulation in the nervous system relies on the influence of gravity acting upon density changes from respiration and evaporation from the skin?

Was it poor posture that initiated the changes in the vessels?

If a flat bed is avoided and the person recovers considerable function and sensitivity, logically it was the flat bed that initiated the problems in the first place.

I look forward to your reply with interest.

Andrew


Dear Andrew:

Thank you very much - assuming the hypothesis about venous drainage from the CNS being impaired in MS is correct, then of course ANYTHING that facilitates the drainage (such as gravity - when one is more upright) would be beneficial, and ANYTHING that impedes drainage further (such as gravity when one is "flat" in bed, or - even worse - keeps the head/trunk lower than the rest of the body, such as with inverted yoga-postures for instance) would be inadvisable.

Remember also that ordinary things like coughing, sneezing, blowing you nose, abdominal pressure with bowel movements, and even the simple process of breathing (!) have quite an influence on the pressures in the venous systems of the trunk, and thereby on intracranial pressure.

I can't think of any harm coming from raising the head of the bed a little bit - also helps to prevent GI-reflux.... but it probably isn't the entire "answer" even if the "venous hypothesis" turns out to be correct.

Best regards,

Karl F. Gross, MD
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Postby Johnson » Sun Dec 27, 2009 11:33 pm

karlgross wrote:
Johnson wrote:
karlgross wrote:
I am curious about the vasculitis idea. What might be the vectors for such? Could Lyme Disease (or other spirochetes), infections of the gut (Amoebic Dysentery, Giardia, Cryptosporidium, etc.), be antagonists? Could additives (Thimerosal, Polysorbate 60, and others) and/or adjuvants, contaminants such as SV40 in vaccines be implicated? Almost rhetorical questions, but I have wondered...

I have often considered that "my MS" was perhaps parasitic, or infectious, at its root (patient history). I intuit that it is more complex than that, but just as anything will come to a critical point before it begins to dis-integrate, I have always wondered at the complexity (or, perhaps, simplicity) of the tipping point in MS presentation.

Er, sorry if that is all unclear.


Dear "Johnson":

The word "vasculitis" itself is simply a generic term for "blood vessel inflammation." But in medical usage it generally refers to a primary inflammation of small arteries (ie, no specific other cause, such as an infection, known).
"CNS-vasculitis" seems to be mostly limited to the brain. It is quite a different disease - and not a cause of MS! Sometimes it needs to be "ruled-out" before a diagnosis of MS is made...

"Complexity" - in the technical sense of the word - is quite an appropriate description of the physiology and pathology of the body; and that's precisely the reason it can be so difficult to figure out things like MS ...

Best regards,

Karl


Thanks for your reply, Karl. I understand the "generic" reference of vasculitis, but that is something that "generally" troubles me. Is there usually an attempt to drill down to a specific infection, or is just given up to generalization? If it is generally dismissed to "unknown" causation, why the lack of curiosity, in preponderance? I understand that there are many thousands of pathogens, but is there no interest in winnowing the chaff?

I ask, because you have been trained as a physician, and would have a better insight into the taught/learned limitations of your profession than I could have. Is Medical School more of an inculcation than an education? Or is the complexity of physiology just too great for such "perfection"?

I am genuinely curious, so I hope that no slight is construed.
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Circulation, Inclined Therapy MS and CCSVI

Postby AndrewKFletcher » Mon Dec 28, 2009 1:05 am

Dear Karl

Drainage considered as a one way blood flow is incorrect. We simply cannot have blood moving in a direction without it having an affect on every single blood molecule in the same network, in the case of the body, we cannot have a downward flow without the molecules dragging on the blood in the venous return causing it to be pulled back up, unless of course the blood is seeping out, which again would have an affect on the blood in the body. It is wrong to say blood rushes to your feet or rushes to your brain, the circulation either increases or decreases but it still circulates.

A downward flow must cause a return flow.

This is also the cause of the reflux back to the brain, which incidentally was confirmed / discovered many years ago by Dr Michel Cabanac, who discovered a complete reversal of blood flow to the brain from the skin, through the holes in the skull due to heat stress. Something Dean Falk used in her radiator theory called selective cooling of the brain to explain the evolution of us walking upright.

In the case of inclined bed therapy, the downward flow is influenced by gravity because of a density loading on the arterial side of the circulation due to the evaporation of salt free water from the lungs and respiratory tract, eyes and skin. Anything that affects the density on one side, no matter how small one might think the changes are will have a direct influence on the pressures in the whole circulation system. When we breath out it inevitably alters the density of the Pulmonary surfactant. The returned surfactant goes back into the artery and into the heart where it is then pumped around the body. The density changes are released as pulses into the arteries, one for every exhale and it is this loading of the arteries by way of minute density changes that enables the circulation to improve while on an inclined bed.

This system can be set up and indeed was at the London International inventions fair 1997, where it was viewed along with an explanation given, by doctors, surgeons, inventors, and the general public. Not a single person had a problem with this explanation and there were many thousands who saw it working without any need for a pump.

What I am saying here is that proving there is a density imbalance on one side of the circulation, gravity must dictate that that density change providing we are correctly aligned with gravity, and given that the tubes in our body run predominantly from head to toe, that alignment must be in accordance with the direction of gravity, the circulation can be positively influenced and over time the pressures can become readily observable in patients with oedema and varicose veins as per the photographs supplied by Alun.

But to sleep flat, having the direction of gravity running perpendicular to the horizontal venous and arterial networks would still have an affect on density changes due to evaporation. In this case, the direction of gravity would be towards the lowest part of the vein or artery and would cause a dragging affect on the concentrated salts and sugars causing them to slow down the circulation due to friction and leave behind deposits as evidence for this, arterial sclerosis springs to mind for one. And deep vein thrombosis another.
In a soft walled silicon tube filled with water, where salt solution is added at the upper part on one side. Closed loop or open tube with both ends submerged in water, the solutes flow down one side causing a return flow in the other side. Here we can clearly see one side of the experiments neck in under the negative pressure and tension of the return flow / venous side applied by the falling salt solution in the juxtaposed downward flowing tube representing the arteries. And at the same time see the salt loaded side expand or balloon out.

Posture can and has been shown to alter the shape and size of varicose veins, just as it does in the solute experiments., but the veins have the capacity to get used to the internal pressure change and therefore resist the tendency to stretch more during daily activity and given sufficient time will return to normal looking veins without any need for surgery.

I now ask where is the part in the anatomy that shows a varicose vein in the leg is somehow irrelevant to a varicose vein in the spine and neck? If we change the pressure in the legs we have to have changed the pressure in the whole venous return!

Andrew
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Postby Johnson » Mon Dec 28, 2009 1:46 am

Wow! Andrew, I almost want to ask you to elaborate on those ideas. Grin.

In all seriousness though, those thoughts are profound, and I appreciate their "novelty". One thing though, and not to nit-pick, but does this - "given that the tubes in our body run predominantly from head to toe" - hold true? I have understood the heart to be the centrum.

With that in mind, do you have any views on Inverted Bed Therapy? (where the feet are 6" higher than the head) I ask, because I was talking about Inclined Bed Therapy with someone, who told me that they were looking at buying an inverted bed. (retirees, with more money than brains...). It seems counter-intuitive for MS, but what about for varicose veins? Is the principle the same? They also feel that more blood to the brain is beneficial, in their dotage. I did not have a lucid response to that.
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Postby AndrewKFletcher » Mon Dec 28, 2009 3:48 am

Johnson

The reference to the direction the veins and arteries in the body run is correct, when standing the veins run from head to toe and not horizontally across the body, this is what was meant.

The place to put a pump in our circulation would be where it can receive the blood from the lungs sufficiently high enough to allow the use of the density changes in the arteries to the renal filtration and eventual excretion along with the urine.

The late Professor H.T. Hammel during one of our telephone conversations said that he had observed a pulsatile pressure arriving at the kidneys that he could not account for. The density changes filled the gap for him. Hammel was also a very good friend of Michel Cabanac and he spent many years trying to understand the ascent of sap in tall trees.

http://www.thisisms.com/ftopic-6726-0.html

Head down tilt as Karl states is not advisable and causes the body to undergo accelerated atrophy among other age related problems.

I have added a short description of how to search this site using google advanced search tool together with a screenshot just in case you find the on forum search engine a little confusing as I did.

If you add the sentence Head down tilt, you will find the answers to your questions.

Hope this is helpful,

Andrew
Last edited by AndrewKFletcher on Mon Dec 28, 2009 8:35 am, edited 1 time in total.
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Postby danegirl » Mon Dec 28, 2009 4:15 am

Thank you Andrew, but your post should have a thread of its own. It is now under the heading of "a DR's question" and will be very hard to locate later.
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Postby euphoniaa » Mon Dec 28, 2009 5:15 am

cheerleader wrote:The good news on this, if it is true, is that lifestyle, diet, nutrition, exercise, posture, etc. can have a very positive effect on the relapsing remitting types of venous occlusions....which is probably why those with less stenosis are able to keep their MS from progressing with changes to the endothelial disrupters. Also why some people can swear that their diet changed their MS...for some lucky ones, this is possible.
............
Perhaps in the future each individual MS patient will get a print out of their type of occlusion, and have an individualized program for their situation....lifestyle, exercise, medication, postural changes, surgical intervention, endovascular ballooning and stenting.


Thank you for the reminder, Cheer, that we're not completely at the mercy of MS/CCSVI (or most of us, anyway) and we do have plenty of opportunities to improve our health despite it. I look forward to this research providing brand new approaches to our treatment that rely less on drugging us. :)

One of the first things that excited me about the CCSVI theory is that it seemed to finally justify/explain my own relatively healthy & mobile status after 30+ years of MS - mainly from a healthy diet, regular, strenuous exercise, plenty of rest, and NO meds.

My main concern, however, is that much of the enthusiastic response so far from PWMS indicates an expectation that CCSVI treatment will instantly deliver them from all physical ailments. I, on the other hand, have so many additional diagnoses I doubt I'd even notice if my MS disappeared entirely. :) (My mantra yet again, "It's not always MS...it's not always MS...")

Wishing good health, good smiles, and good attitudes to all. :)
*
*
*
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Postby broomdancer » Mon Dec 28, 2009 7:11 am

Hello everyone
I have been looking for information in this forum and so far this has eluded me. Can someone explain why and who halted Dr Zamboni's procedures in Italy or where else I may find this out ? Is there hope that he will beable to resume in the near future? I would greatly appreciate any info.
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Diana
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Postby patientx » Mon Dec 28, 2009 8:52 am

msh wrote:I am a nurse and don't understand some of this. I was told once you have brain lesions they don't go away but we are seeing otherwise. My lesions are stable but who knows when they started or why. My neuro thought they might be from the EBV. He also said that people with migraine syndrome have brain lesions, but I have no hx of migraines. He said that if we MRI everyone probably 10% of the populations would show up with benign brain lesions.
Comforting!!!
I don't have MS but I have brain lesions, and EBV and possible stenosis.
My friends and family with MS are even confused.
michele


I think the problem is that "lesions" is a catch-all term, and is not very meaningful. From what I've seen, any hyperintensity on an MRI picture can be called a lesion. And these can be caused by various things. Like you mentioned, they can be due to infection or migranes, but also vasculitis, Behcet disease, Sarcoidosis, etc. Dr. John Fleming's article, "The Differential Diagnosis of Multiple Sclerosis," gives a complete run-down.

It's pretty difficult to definitively say what any particular lesions are from (short of a brain autopsy). That's why MS is often called a disease of exclusion. In the absence of other obvious causes, along with the neuro exam and symptom history, a reasonable interpretation is made of the MRI lesions. In the case of MS, these are usually due to de-myelination, or the scar tissue resulting from the body's attempt to repair de-myelination. This is one reason (at least in theory), why MS lesions can disappear - the body is able to re-myelinate them.
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