Why does treatment help so fast ?

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

Why does treatment help so fast ?

Postby bruce123 » Wed Dec 08, 2010 5:17 am

My wife is one of the lucky ones who is seeing improved walking after only a few days post-angioplasty. We have all seen videos and read reports of the many people who have had very sudden improvements in their ability to move their legs or walk better. I don't understand the hypothesis for these fast improvements.

As I understand the current theory, malformed blood vessels cause slow drainage and reflux which results in increased deposition of iron in the brain. This in turn triggers autoimmunity and degeneration of the nerve's myelin sheath. The signals from the brain are then unable to travel effectively to the various parts of the body. This degradation of the nervous system happens slowly, over many years or even decades.

How is it that improving the flow (drainage) can improve the functioning of the nervous system within days? I've seen it with my own eyes. I just don't understand the hypothesis.

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Postby Cece » Wed Dec 08, 2010 6:22 am

At the Brooklyn symposium in July, one of the doctors brought up diabetic rat research from the nineties that showed that poor blood flow made their nerve conduction worse and that restored blood flow restored their nerve conduction. I haven't got a link to it but I found it intriguing.

congrats to your wife, improvements in walking is a big-ticket winner!
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Postby CCSVIhusband » Wed Dec 08, 2010 7:29 am

Bruce, I've seen it with my own eyes as well (something the skeptics can't say and hence why they don't believe among other reasons I'm sure ... but that's neither here nor there for this discussion). So, I've seen the same things you have.

From what I gather, along the lines of what Cece said ... as soon as you get proper blood flow, you start to get more "healthy fresh blood" regularly flowing by - which contains more positive nutrients for cell life than the blood that was "trapped" there by CCSVI.

This better oxygenated blood helps the areas that were affected by "MS lesions" heal, repair and do things better than previously.

So when we breathe, we only use 20% of the in-take oxygen to support the life of the body (muscles, cells) ... the rest is breathed out. As the blood flows, even as it makes its way from the arteries (carrying fresh oxygenated blood) to the veins (bringing back used oxygenated blood) ... more oxygen is left for the veins to carry back to the lungs keeping the blood fresher than if it gets trapped by CCSVI.

So that's my explanation. Bad/poorly oxygenated blood gets stuck in CCSVI (which then causes the "degenerative" part of MS over time as it is a continuous cycle UNLESS CCSVI is CORRECTED) ... but when CCSVI is corrected ... better blood flow can rapidly (in some cases) help the areas affected.

Also, after liberation ... did your wife say she could feel her blood flowing better (i.e. did she feel her areas of numbness if she had any, go away ... the same as if your foot fell asleep, and the feeling starts to return. My wife did and I've heard stories from others who say the same) ...


Thus my equation of ...

CCSVI (yes or no) * degree of severity of CCSVI (out of 10) * time = severity of MS


100 * 9 * XXX years = severity of MS

Still seems to hold up! Like I said, I'm pretty good at math ... and so far the equation has worked in several cases (predictably).

:D

and here come the arguments I'm sure ...
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Postby TFau » Wed Dec 08, 2010 7:43 am

That's an excellent question Bruce and one I would have myself. I'm so happy for your wife's improvements, by the way. It must feel so surreal, especially since your expectations were in check!

All of the explanations above do not explain how the better-oxygenated blood increases nerve conduction so quickly. That part is fascinating. Is anyone studying it? Dr. Haacke's expertise seems to be in medical imaging. Maybe the walking impediment, or some of the impediment, wasn't actually caused by the demyelinated nerves in the first place.
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Postby Cece » Wed Dec 08, 2010 7:45 am

There has been much talk about CCSVI's effect on oxygenation of the brain, I always want to pipe up and say don't forget about the glucose needs of the brain too. That too is likely depleted when outflow is blocked.

Some previous thinking on fast improvements was that it could be placebo, vascular in nature, or autonomic nervous system (?). Also if fatigue is lifted, then that can account for some improvement too possibly, such as being able to walk farther than before.

A big difference is if the neurons are "merely" damaged or undernourished, they can be restored, but if the neurons are gone, then they can't be brought back.
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Postby bruce123 » Wed Dec 08, 2010 9:13 am

CCSVIhusband wrote:Also, after liberation ... did your wife say she could feel her blood flowing better (i.e. did she feel her areas of numbness if she had any, go away ... the same as if your foot fell asleep, and the feeling starts to return. My wife did and I've heard stories from others who say the same) ...
.


My wife didn't have any numbness. She does get tingling in her hand before her arm pain starts but that continues. Fortunatly, her arm pain is much less frequent now. She didn't mention any feeling of better blood flow. I'll ask her about that tonight.

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Postby David1949 » Wed Dec 08, 2010 11:34 am

I'm not a doctor so please accept this as just the opinion of an MS sufferer.
In my opinion CCSVI can affect us in at least two different ways.
1) I think most people have had the experience of having their foot fall asleep. It usually happens if you have been sitting on it in such a way as to cut off the blood flow. When you try to stand up the foot feels numb and there is a pins and needles sensation. If you try to walk the leg may be clunky and refuse to do what you want it to. But if you stand and shake the leg for a few minutes the blood flow will be restored and soon the leg will be back to normal. Now imagine a similar situation in the brain where ccsvi restricts the blood flow to certain areas of the brain. The brain cells will have inadequate oxygen and nutrients to function properly and then you get MS symptoms. If you restore the blood flow through angioplasty then the brain will receive adequate oxygen and nutrients and brain function will quickly be restored. Although if the stenosis is so severe that blood flow is totally blocked then the brain cells will begin to die within minutes. In that case it may be impossible to restore function.

2) The autoimmune theory must be a two step process. Anti-bodies must get programmed to identify myelin as enemy and then attack it. But before that can happen something else must occur. The anti-bodies must get through or around the blood brain barrier. In a normal person the anti-bodies which circulate in the blood stream go everywhere except into the brain tissue. They are blocked from doing so by the blood brain barrier (BBB). But in someone with MS they do get past the BBB and are then able to attack the myelin.

The blood brain barrier is made up of endothelial cells which line the capillaries in the brain. Elsewhere in the body the endothelial cells are loosely knit together so anti-bodies and other large particles are able to pass between them. But in the brain these cells are tightly knit together so that anti-bodies, red blood cells, and other large particles cannot get through. Those particles will simply flow into one end of the capillary from the arteries and out out the other end into the veins. But they cannot pass through the capillary walls and get to the brain tissue.

Now I have to remind you once again that I'm not a doctor. I'm just an old engineer with MS. In my opinion ccsvi causes the damage to the capillaries and or veins which allows the anti-bodies to get to the myelin. The exact mechanism by which this happens is unclear but it may be that the capillaries and or veins themselves are damaged by insufficient blood flow. Zamboni notes that MS plaques and iron deposits are venocentric, meaning that they are centered around veins. To me that suggests that the anti-bodies are getting through the veins. Red blood cells could also be penetrating the damaged vein walls. Once they get through they have no way of getting back to the blood stream so they eventually die there and leave behind their iron rich remains.

Anyway that's my theory.
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Postby MrSuccess » Wed Dec 08, 2010 11:55 am

an even simpler theory .

when pressure is applied to the cartoid vein in your neck .... you WILL lose consciousness . You WILL however .... continue to breathe , as your airway has not been blocked .

The restriction in bloodflow ...... causes this.

upon releasing the pressure on the neck's cartoid ..... the person resumes his/her consciousness.

this clearly demonstrates the importance of blood flow INTO the brain.

to suggest that restricted bloodflow OUT of the brain plays no role in the health and function of the brain .........

is preposterous.





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Postby TMrox » Wed Dec 08, 2010 12:37 pm

Here an extract of Dr Dake's commenting piece on CCSVI:

"Some of the symptoms of MS mimic those observed in patients with superior vena cava syndrome. Relief of superior vena cava obstruction with venous angioplasty and stent placement, if required, provides swift and dramatic resolution of the symptoms of impaired cognition and fatigue. Thus, it is not surprising that patients with CCSVI associated with MS also report rapid relief of these nonlocalizing symptoms."

http://bmctoday.net/evtoday/2010/07/art ... ufficiency
Diagnosed with Transverse Myelitis in December 2008. Inflammatory demyelination of the spinal cord (c3-c5). No MS, but still CCSVI.
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blood flow

Postby Rosegirl » Wed Dec 08, 2010 12:53 pm

I suppose everyone is different. In my case, my venogram showed lots of collateral veins in my head that the IR couldn't open and lots of blockage in the azygous which did get opened.

My only symptom is that I'm very stiff and I can barely walk. The venogram got rid of my purple feet, but it didn't help my walking at all.

Over the years, on several occasions, all of a sudden I could walk perfectly -- for 1-5 minutes. It was too rapid to even fall under the category of relapsing/remitting.

In my case, I'm putting all my bets on a valve problem. That's the only thing that is likely to explain such rapid changes. And guess who made no mention of looking at the valves during my procedure -- even when I begged him to.
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Re: blood flow

Postby David1949 » Wed Dec 08, 2010 1:30 pm

Rosegirl wrote:My only symptom is that I'm very stiff and I can barely walk. The venogram got rid of my purple feet, but it didn't help my walking at all.

Over the years, on several occasions, all of a sudden I could walk perfectly -- for 1-5 minutes. It was too rapid to even fall under the category of relapsing/remitting.



Rosegirl
My symptoms are somewhat similar in that they are almost exclusively related to my walking ability. My right side is fine but the left leg is a problem, especially for drop foot. When I'm sitting down I can tap my right foot up and down without trouble, but the left foot will barely rise. However at night sometimes when I'm lying flat on my back with no pillow, I can move the left foot. Wierd!
BTW I am unliberated :cry: ...yet.

Does your ability to "walk perfectly" occur after any particular circumstances? Also when were you liberated?
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Postby David1949 » Wed Dec 08, 2010 1:44 pm

MrSuccess wrote:an even simpler theory .

when pressure is applied to the cartoid vein in your neck .... you WILL lose consciousness . You WILL however .... continue to breathe , as your airway has not been blocked .

The restriction in bloodflow ...... causes this.

upon releasing the pressure on the neck's cartoid ..... the person resumes his/her consciousness.

this clearly demonstrates the importance of blood flow INTO the brain.

to suggest that restricted bloodflow OUT of the brain plays no role in the health and function of the brain .........

is preposterous.





Mr. Success


I agree with everything you said as far as it goes. But it doesn't explain the MS plaques or the presence of anti-bodies in the cerebro spinal fluid or the iron deposits. Nor would it explain why some folks have CCSVI but no MS. Please don't take this as criticism. I think if we critique each others theories we can hammer out what fits the known facts and what doesn't. Feel free to take a whack at my theory. :)
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Postby TFau » Wed Dec 08, 2010 1:50 pm

Related to this discussion, I think, is the correlation of lesions with walking ability. My husband is weak only on his left side. IT started with foot drop in his left leg and now he has to lift his hip to swing his leg and he also has very limited function in his left hand (that didn't stop him from putting up a garage door opener with the help of a bungy cord - I call him MacGiver sometimes).

His lesions are small and spread throughout. Wouldn't there be a predominance of lesions on one side or the other if the demyelination is causing his symptoms? His right side is completely normal.

I find it frustrating that neurologists don't seem academically interested in this sort of thing. The one time I asked about this, I was told something along the line of "MS is a mysterious disease".
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Postby MrSuccess » Wed Dec 08, 2010 3:11 pm

hi david - glad you liked my post. upon review ..... I called the cartoid a '' vein '' .... when in fact ..... I meant cartoid ARTERY . sorry about that :oops:

at the risk of simplifying a complex matter ...... I offer the following

theory


for whatever reason ..... when the brain cannot readily drain the blood pumped into it ...... due to reduced diameter or blocked veins ...... the brain then reacts to the lingering presense of - stagnated ? - oxygen depleted blood . Traces of iron begin to store in the brain.

As explained by others ..... this is a significant problem .

Your autoimune system try's to combat the problem. But until your brain has a free flowing circuit of blood ...... your AIS continues to try it's best to help you .

Again , at the risk of simplifying a complex thing ........

our body's have a fluid pump [ your heart ] ..... it has a pressure side [ your cartoid ARTERIES ] ..... your heart pumps a fluid [ blood ] UP into the most delicate and least understood organ in your body [ your brain ] by way of your neck . with any luck ... your brain recieves a nice steady supply of oxegenated , clean , blood ..... that nourishes and cools your brain ..... at which point the used blood is then returned to the heart by way of the VEINS in your neck , more or less by GRAVITY. Keeping veins open on the LOW pressure side of the system is proving difficult .

And the process repeats itself .... time and again.

what has been discovered .....is that people that have developed specific health problems ....... have proven compromised blood flow systems .....

when these people have their blood flow circuit repaired ..... they often report various improvements in their health .

Interesting . Indeed.






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Postby David1949 » Wed Dec 08, 2010 8:19 pm

TFau wrote:Related to this discussion, I think, is the correlation of lesions with walking ability. My husband is weak only on his left side. IT started with foot drop in his left leg and now he has to lift his hip to swing his leg and he also has very limited function in his left hand (that didn't stop him from putting up a garage door opener with the help of a bungy cord - I call him MacGiver sometimes).

His lesions are small and spread throughout. Wouldn't there be a predominance of lesions on one side or the other if the demyelination is causing his symptoms? His right side is completely normal.

I find it frustrating that neurologists don't seem academically interested in this sort of thing. The one time I asked about this, I was told something along the line of "MS is a mysterious disease".


Your husband's symptoms sound similar to mine. All my problems are on the left side. I also have severe foot drop. My left hand still works, sort of. But your husband has got me beat on putting up the garage door opener. I had to pay someone to do ours. :-)

My MRI at the time I was dxed showed maybe a half dozen small lesions scattered about the brain. But there was also one larger lesion about 1/4" in diameter near the center of the brain toward the right side. The neuro said that one was probably causing the problems on the left side.

The neuros only have MS drugs in their toolkit. That's all they know how to do. IMHO they're like drug pushers really.

BTW as I mentioned to Rosegirl above I seem to have more function in the left foot if I'm lying flat on my back without a pillow. Does your husband have that too?
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