Chronic Cerebrospinal Venous Insufficiency (CCSVI)-

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

Postby mrhodes40 » Fri Mar 06, 2009 4:28 pm

stiffen u like a 2x4


Lew, Me too and I also found that later rather than earlier. I don't shiver: I spasm and become non funcitonal, and it is painful. :x

Cheer, interesting thing you noticed there!

Hormones get into our blood circulation via venous drainage thru the internal jugular vein....the pituitary and hypothalmus rely on venous drainage to get hormonal messages into our bodies. If there is venous insufficiency, the HPA axis is thrown off!!!!


The first statements are true for sure, but the last is a "maybe". the IJV reflux is on the order of .5 seconds, the blood still gets to where it is going it is just slower. The question would be is that small difference going to change the function of the system as far as hormone delivery or not? People in shock still get their HPA going, that's why their heart rate goes up, and thier entire circulation can be slower if they lost blood.

Its is incredibly interesting and maybe worth more looking into :wink:
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Gravity + direction + density = Circulation + Friction

Postby AndrewKFletcher » Sat Mar 07, 2009 1:53 am

The major source of heat for endotherms is the metabolism of their internal organs. Over two-thirds of the heat generated in a resting human is created by the organs of the thoracic and abdominal cavities and the brain (which contributes 16% of the total — about the same as all our skeletal muscles when they are at rest).


If this is the case, then why does metabolism alter with posture? Why do people who cannot maintain their body temperature suffering from hyperthermia and hypothermia is very common with neurological conditions. These people still have all of the internal organs and all appear to be working fine in most cases, yet their metabolism is adversely affected.

The clue lies in postural changes. Could the flow of blood and fluids through the body be responsible for the heat generated in warm blooded species? Why does IBT alter metabolism? Why does going into orbit around the earth for example adversely affect the metabolism and astronauts have serious problems maintaining their body temperature, and use exercise to keep warm. Despite having the very best in heated space suits, hypothermia still presents problems.

As previously discussed and shown photographically, IBT / Gravity alters the pressure and even the diameter of swollen vessels, reduces blood pressure from dangerous levels to normal levels within weeks, yet marginally improves the body temperature. This was shown by taking mouth temperatures during the night and plotted against a graph found in every nursing and physiology manual showing a 2 degree drop around 3.30 am for people sleeping flat. The inclined bed however prevents this drop in temperature from taking place by assisting the flow of blood and fluid through the entire network of vessels and tissue. All of this fluid activity cannot take place without generating friction. Yes fluids do generate friction travelling through conduits.. So the question arises why are some species warm blooded and other species not so warm blooded?
Image
Again posture comes into the physiology of reptiles, larger fish like sharks and larger mammals in the ocean continually change their angle in relation to the circulation networks. Some creatures appear to us to be behaving oddly like the hibernating dormouse sleeping curled up in a ball raising Here there is ample evidence that altering posture for reptiles alters their core temperature. Alligators and crocodiles can be found resting on sloping banks basking in the sun. Head down and their temperature falls, head up and it rises.

loss requires the correct sized radiator in order to balance the burned fuel against the cooling air rushing through the radiator. Partially blocked or compromised and the engine boils the water.

My wife and I and many more people have realised we no longer require so much bedding to keep warm in bed, and do not experience very uncomfortable nights profusely sweating when summer temperatures and humidity soars as we had done for many years sleeping flat. So although we are warmer throughout, we are resisting the overheating phase also.

Unless some kind of fever is present we do not tend to either over heat or become cold in bed. But IBT goes much further, bringing about remarkable improvements during the day for people with spinal cord injury, that have reported on numerous occasions being able to go outdoors without wearing a coat and not experiencing hypothermia as had been the case previously.


Reply to someone asking about temperature and spinal cord injury.

It does not matter how you do it, whether you sling out your heavy bed and get another, place a plywood wedge beneath your mattress, or simply put some folded blankets under your mattress to give you the angle. Do IT!

When I started this, I had the belief that it would simply have to work with spinal cord injuries. I now, not only still hold to this belief, I have collated a tremendous amount of positive data, that supports the fact that the human body is not designed to be horizontal at any point in our lives.

I have been watching the thread relating to warmth. One of the first changes that people notice using the inclined bed is that their body temperature rises when compared to sleeping on a flat bed! In order to understand why sleeping inclined should be any different to sleeping flat, or for that matter sleeping with your upper body raised and your legs raised, you must first understand what generates the heat in the body of us and other animals.

Answer is “Posture:” Look at reptiles, relatively un-elevated and cold-blooded. Dinosaurs, again reptiles and once thought to be cold blooded, now accepted as being warm blooded reptiles. Why? Answer: Because they were elevated above the horizontal posture of today's reptiles.

Next time you’re at the zoo, or in a pet store, study the lizards and see how they use gravity in order to either warm themselves or cool themselves, by altering their posture. Cows and sheep in a field will also use the same principles as the lizard, by choosing to sleep on a hill facing up when laying on the ground! Is it a coincidence that Crocodile and alligator use a River bank incline to warm themselves and cool themselves, by deciding which way round they want to be in relation to gravity?

When a person get a spinal cord injury, they are immobilised for prolonged periods of time. Inevitably stuck in bed. “Lizard Posture”!

Sitting in a wheelchair, designed to tilt the weight of a person back into the chair, and in doing so, places restrictions on circulation, which in turn reduces friction, leading to a drop in body temperature, which in turn leads to susceptibility of infections. “Hibernating Dormouse Posture”


A bat for example, hangs upside down and is able to reduce its body temperature to near freezing during hibernation. The same goes for the dormouse, who, like the bat adapts its posture so that its body temperature and circulation drop to the bare minimum.

When a person with a spinal cord injury elevates their bed and sleeps on an incline, the circulation increases throughout the body. As gravity accelerates the circulation of fluids through the narrow vessels of the body, it causes additional friction, The uptake from the gut and intestines becomes more efficient and less water flows through the bowels, resulting in firmer stools! with the end by-product resulting in additional warmth. Evaporation increases from the skin and respiratory tract due to the inevitable increase in body temperature, further accelerating circulation, which in turn accelerates evaporation. When the bodily fluids become warmer, they flow more easily, reducing friction and thereby regulating us from overheating and this in turn aids the recovery. This is particularly important with regards to respiratory problems such as infection.

Everyone so far who has a spinal cord injury and tried this simple intervention has noticed that they are more able to maintain normal body temperature.

Andrew


Discussion on evolution and temperature.
http://www.thenakedscientists.com/forum ... c=16023.25
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Postby cheerleader » Sat Mar 07, 2009 8:07 am

Thanks, Andrew- Very interesting correlation you found by measuring you and your wife's temperature every hour (!) during the night on incline, as opposed to the medical chart. Hope more people try your therapy and see for themselves if it is beneficial-

Our body's heat is mostly generated by our own internal organs and posture and circulation play a part. I was referring to our body's temperature controller...the hypothalmus, located at the base of the brain, which sends hormones thru the internal jugular vein. MSers have temperature control issues, whether seated, standing or moving. I've noticed this overheating with my husband, and intolerence to extremes in heat or cold is a major issue for many MSers.

My supposition is that there becomes a hormonal feedback loop- the transmission of hormonal messages is congested as it is carried thru the venous network and the body does not receive the correct messages thru the HPA axis. Marie points out that the delay in time is very small....but I need to look into this more, see if there's more research.

Marie...your doppler testing is soon, right???
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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yes

Postby wobbly » Sat Mar 07, 2009 10:18 am

IT DOES HELP/ i am lots better/ just laying low with posts/ but still following/ this is 4 real / it will be a staple of treatment if not a cure in the future/ STAY STRONG ALL----PEACE 8O 8O
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WOW!

Postby cheerleader » Sat Mar 07, 2009 10:38 am

THIS IS AMAZING NEWS...
For folks who do not know, Wobbly traveled from SUNY Buffalo and had the endovascular procedure done in Italy by Dr. Zamboni, after being tested and found to have cerebrospinal venous insufficiency. Wobbly has signed an agreement not to talk about this, since Dr. Zamboni is in the process of writing up his research for presentation in April, but he/she has been posting a bit to encourage those of us hot on this trail.

I'm thrilled for wobbly, and everyone else,
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby mrhodes40 » Sat Mar 07, 2009 10:44 am

Thanks Cheer, Mar 13. Next friday. 8O Hope it works and they are capable.

Thanks wobbly. We recognize you are not allowed to talk about your procedure, but the encouragement is welcome!
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Postby Loobie » Sat Mar 07, 2009 2:55 pm

One of the last things I had done at work was to GET A FREAKIN' PASSPORT!! I love hearing this. And my Mom's last name is Bonaventura, so I'll be amongst homies :D :lol:
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Postby mrhodes40 » Sat Mar 07, 2009 8:22 pm

Go Lew!

Here's a picture of he veins of the head...if I was Cure I could probably put it on here with credit but instead I have to put a link to it........ :oops:

http://www.ajnr.org/cgi/content/figsonly/23/9/1500

Notice how many veins there are, most of them drain to the jugulars or vertebral veins eventually. But the brain parenchyma is all through those veins usually, that picture is of veins separated out and no brai tissue is in there so you see the venous tree clearly, you can notice several things:
-the overall symmetry of the venous system
-the fact that one of those larger veins blocked plugged constricted or otherwise impaired (think garden hose) would have FAR reaching consequences as those veins behind that area would back up
-those small veins look pretty delicate and they are in touch with even more delicate brain tissue
-saying there is a reflux in the large veins of the cerebrospinal system means that there is far reaching possibility for injury to brain tissue IF it is possible for mechanical injury from reflux to hurt brain tissue.

I find it just interesting to look at the venous tree and think about what we've been thinking about.................... Just thought some others might want to do that too
Last edited by mrhodes40 on Sat Mar 07, 2009 8:54 pm, edited 1 time in total.
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Postby mrhodes40 » Sat Mar 07, 2009 8:52 pm

Simka did a rapid response to Dr Zamboni's published paper in December found here
http://jnnp.bmj.com/cgi/eletters/jnnp.2008.157164v1

It's been linked here before. Something in that response caught my eye and I have been thinking about it. Notice this comment

Indeed, although Zamboni has found increased venous pressure distally of venous stenoses, these pressure gradients were rather small. Thus, it is more likely that not venous hypertension, but pathological pattern of the blood flow-associated forces, decreased level of shear stress in particular, disassembles the blood-brain barrier and increases the transendothelial permeability. It has been found that an enhanced expression of pivotal tight junction proteins: occludin and ZO-1 in the cerebrovascular endothelium was associated with reduced transendothelial permeability and it has been shown, moreover, that an increased shear stress, especially with pulsatile flow characteristics, upregulated these proteins (3). By contrast, loss of shear stress after flow cessation enhanced the blood-brain barrier permeability


I looked up reference 3, the one about the shear forces here's a bit about that:
found here
http://www.ncbi.nlm.nih.gov/pubmed/15920760
.....Brain ischemia is associated with an acute release of pro-inflammatory cytokines, notably TNF-alpha and IL-6 and failure of the blood-brain barrier. Shear stress, hypoxia-hypoglycemia, and blood leukocytes play a significant role in blood-brain barrier failure during transient or permanent ischemia. However, these mechanisms have not been studied as independent variables for in vitro ischemia. The present study, using a dynamic in vitro blood-brain barrier model, showed that flow cessation/reperfusion under normoxia-normoglycemia or hypoxia-hypoglycemia without blood leukocytes in the luminal perfusate had a modest, transient effect on cytokine release and blood-brain barrier permeability. By contrast, exposure to normoxic-normoglycemic flow cessation/reperfusion with blood leukocytes in the luminal perfusate led to a significant increase in TNF-alpha and IL-6, accompanied by biphasic blood-brain barrier opening. Enhanced permeability was partially prevented with an anti-TNF-alpha antibody. In leukocyte-free cartridges, the same levels of IL-6 had no effect, while TNF-alpha caused a moderate increase in blood-brain barrier permeability, suggesting that blood leukocytes are the prerequisite for cytokine release and blood-brain barrier failure during reduction or cessation of flow. These cells induce release of TNF-alpha early after ischemia/reperfusion; TNF-alpha triggers release of IL-6, since blockade of TNF-alpha prevents IL-6 release, whereas blockade of IL-6 induces TNF-alpha release. Pre-treatment of blood leukocytes with the cyclooxygenase (COX) inhibitor, ibuprofen, inhibited cytokine release and completely preserved blood-brain barrier permeability during the reperfusion period. In conclusion, loss of flow (flow cessation/reperfusion) independent of hypoxia-hypoglycemia plays a significant role in blood-brain barrier failure by stimulating leukocyte-mediated inflammatory mechanisms....


Notice that there is a significant issue with these changes in shear forces inducing huge changes in cytokines...........

In regular language, the flow getting changed-- turning on turning off, blood flowing into an area, then not, then returning--, resulted in damage because all that wierd flow caused our old nemesis the inflammation (TNF-a, IL6 etc) to make the BBB open up.

Isn't it interesting that they noted a prevention of BBB failure by treating with ibuprophen? I know they had done studies years ago trying to see if such NSAID's (non steroidal antinflammtories) and they did not seem to help MS much, so I'm not sure what to make of that, but it might suggest that all the focus on TIMS recently on supplements that do similar things maybe could turn out to help reduce that issue somewhat.

however, getting rid of these supposed shear forces putatively caused by reflux would be a cure for that issue though if it were there, rather than trying to stop the inflammation that it caused secondarily.

Assuming of course that Z is right and we are having these issues this way.

ANd once again it suggests a possible mechanism for autoimmune approaches to be very helpful; if you have prevented all that inlammatory reaction you prevent the BBB breakdown.

If you read the whole abstract linked first you'll see that Simka also suggested the altered BBB might allow autoimmune reactions secondary to that damage.
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Postby mrhodes40 » Sat Mar 07, 2009 8:53 pm

:roll:
how''d I post that twice..............geez :oops:
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Postby gibbledygook » Mon Mar 09, 2009 5:48 am

Wow! This is such an exciting thread!!!

Andrew, I have to confess that I have noticed a flagrant increase in body temperature lying on my inclined pillow bed but put this down to the duck down feathers in the pillows...

I have also noticed that I am not visiting the toilet 3 to 4 times a night BUT this started before I started lying on the inclined bed and when I started taking broccoli sprouts. However I stopped these a week or so ago.

I continue to experiment with horsechestnut (used for varicose veins) and quercetin etc. Best walk so far on 600mg horsechestnut, 333mg quercetin, 600mg hesperidin.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby CureOrBust » Mon Mar 09, 2009 7:13 am

sou wrote:When taking chemo for cancer, it is usually combined with drugs that protect the endothelium.
What drugs are these?

Marie, I personally do not think the article specifically about ischema is actually all that conclusive in regard to Zamboni, just an indicator for further research required. The ischema tested, was a blockage for 60 minutes.

You can read the full article here: http://ajpcell.physiology.org/cgi/content/full/291/4/C740

mrrhodes40 wrote:however, getting rid of these supposed shear forces putatively caused by reflux would be a cure for that issue though if it were there, rather than trying to stop the inflammation that it caused secondarily.
As for the "shear-stresses", I think you actually want these. The reflux causes the shear stresses to be reduced or absent for a period, and it is this case that was found in the various studies to induce a permeable BBB.

mrrhodes40 wrote:Hope it works and they are capable
As for the tests, they seemed pretty simple to perform. So I would guess if they know the test, they will get it right. I think. The only tricky part I could see was knowing where to find the physical item (eg Jagular Valve etc), with different locations/angles, and frequencies for depth (I am guessing). My girl just moved it around my neck, and on the side of my skull, while I was sitting, and laying down. So I am sure you needn't worry about their ability, it didn't seem like rocket science.

Wobbly, thanks.

I also asked my guy to send me the actual results of my doppler tests, I am surprised he hasn't written back to the referring doc yet.
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Postby cheerleader » Mon Mar 09, 2009 12:12 pm

From the original Zamboni paper on CCVI re: reflux. It's not valve failure causing this...
The mechanism underlying this reflux differs from the reflux caused by incompetence of the jugular valve. In the latter case, valvular insufficiency tested with Valsalva can be related to a picture of transient global amnesia.14
In our study the reflux occurred in any body position without the need to elicit it by a forced movement, suggesting that it is not an expression of valvular incompetence but rather of a stenosing lesion that cannot be crossed with postural or respiratory mechanisms, thereby becoming a long-lasting reverse flow.


Cure, I just reread your earlier posts. The docs didn't see anything blocking your jugular flow, right? They claim it was the valve? Any update, let us know.
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby mrhodes40 » Mon Mar 09, 2009 3:24 pm

Marie, I personally do not think the article specifically about ischema is actually all that conclusive in regard to Zamboni, just an indicator for further research required. The ischema tested, was a blockage for 60 minutes.



The person who offered that reference was Simka, I just got interested in the comment he made and so looked it up. Simka is the one who offered that the study supported the idea that Zamboni's reflux was related to the work in that paper.He offered it as support for the idea that it need not take great venous hypertension to open the BBB, but that rather the altered flow could open the BBB without any severe hypertension. It is an important point, one I am not capable of arguing, but Simka did...
simka said
It has been found that an enhanced expression of pivotal tight junction proteins: occludin and ZO-1 in the cerebrovascular endothelium was associated with reduced transendothelial permeability and it has been shown, moreover, that an increased shear stress, especially with pulsatile flow characteristics, upregulated these proteins (3).


Reference 3 is the abstract I added as a paste. So apparenty Simka believes that the altered flow dynamics in Zamboni's work is supported by this study that has 60 minute hypoxia then reperfusion.

Cure said

As for the "shear-stresses", I think you actually want these. The reflux causes the shear stresses to be reduced or absent for a period, and it is this case that was found in the various studies to induce a permeable BBB


:oops: You are right... I was using the word to refer to the stopping starting of blood flow but the paper uses that phrase very specifically to refer to normal pulses in the veins which are not a problem for the bbb; problem for the BBB is suggested to be the altered flow. Sorry for the confusion.

The reason that phrase caught my eye is because it seems like when we get down the real bottom line it has to be this: can relatively mild reflux cause MS lesions, that's the million dollar question. Simka seems to be offering that it can and offering that paper as support.

just moved it around my neck, and on the side of my skull, while I was sitting, and laying down. So I am sure you needn't worry about their ability, it didn't seem like rocket science.



Thanks I hope so! :D They did however only find one abnormal finding on you. Zamboni says all MSers have 2. We know you have MS so either Z is wrong and people with MS can have only 1 abnormal reading or the people who did your scans, and potentially mine, are not as capable as Z. My suspician based on the fact they have 100% concordance in blinded controlled studies is that it is probably the latter: others do not interpret the color dopplers the same way or don't see things as abnormal when they actually would be seen that way in Z's clinic.

Where it really MATTERS is in where they decide to do venography after the dopplers, to see pinpoint where they might do an endovascular procedure to alleviate the flow abnormalities....or whether it is all just seen as some kind of cute side effect of MS that is meaningless.

I am hoping we actually find something "fixable". We'll see.....just a couple days now........
marie
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Postby CureOrBust » Mon Mar 09, 2009 4:32 pm

cheerleader wrote:From the original Zamboni paper on CCVI re: reflux.
suggesting that it is not an expression of valvular incompetence but rather of a stenosing lesion that cannot be crossed with postural or respiratory mechanisms, thereby becoming a long-lasting reverse flow.
I do not remember that he performed any enhanced venography (or whatever) in the first studies? so I think in the earlier studies he could only use language like "suggesting", and wasn't definitive in his language. You would think if he had found a "stenosing lesion" in 100% of MS venographys, he would of clearly stated that in his paper, which I do not recall :?:

As for the "long-lasting" reverse flow, that would definitely be visible in a doppler exam. I'd like to know what his definition of "long-lasting" is? as he only tests for 0.5s-0.8s reversals in the tests and documents I have read.

cheerleader wrote:The docs didn't see anything blocking your jugular flow, right? They claim it was the valve?
Nope, nothing but the jugular valve failed the 5 tests he has presented in his paper. I did NOT do the invasive tests. 8O


mrhodes40 wrote:The reason that phrase caught my eye is because it seems like when we get down the real bottom line it has to be this: can relatively mild reflux cause MS lesions, that's the million dollar question
Now, this is just me, I am wondering can the small (ie 0.8s reflux as compared to 60min ischema) change in flow, repeated constantly over a long period of time, cause the same damage or worse, to the BBB? I'm thinking along the lines of "metal fatigue" type of failures.

mrhodes40 wrote:others do not interpret the color dopplers the same way or don't see things as abnormal when they actually would be seen that way in Z's clinic.
This is the problem I currently have with his work. His exams are not rocket science, and they have very specific and clear definitions of success or failure. It isn't left up to the sonographer to "see" the failure, it is a measured reading and compared against a specific value. Ask your guys before they do it, if this is the case? Zamboni himself, in the papers, says they are "simple" tests. Yes its possible that my people made a mistake, but at this point, I think they were very capable at repeating the tests as Zamboni et al prescribed.

mrhodes40 wrote:Where it really MATTERS is in where they decide to do venography after the dopplers
I'm a little concerned that it may require these intrusive procedures to identify the issues in 100% of MS patients.
mrhodes40 wrote:or whether it is all just seen as some kind of cute side effect of MS that is meaningless.
I have though about this, and my GP question it also. The only thing I can think of is that the muscles supporting the venous structure are not receiving the proper stimulation from nerves (due to MS), and therefore the relaxed support causes some alteration in flows; or this is not as exclusive to MS as Zamboni feels.
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