The recovery process

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

The recovery process

Postby L » Thu Nov 25, 2010 5:12 pm

Some of the youtube videos show that some patients experience a remarkable recovery. Clearly, some people feel better after CCSVI is treated.

It seems to be supposed that immediate improvements may result from:

*improved blood flow aiding damaged neurons to conduct impulses

*improved blood flow creating an environment which promotes axonal recovery

*improved blood flow creating an environment which promotes re-routing of axons.

Of course, some ascribe improvements such as reduction of cognitive fog, cold extremities, tinnitus, fatigue and even visual impairment directly to improved blood flow.

Does anyone have any other theories? Have any doctors suggested what the mechanism for recovery might be?

Oh yes, and please, no one hijack this thread and turn it into the cyclical 'is it the placebo effect?' discussion. If you believe those videos to all display the placebo effect (unlike the high dose cyclophosphamide videos on youtube) then let's just assume, for the sake of argument, that CCSVI is genuine and treating it results in genuine improvements. Thanks.
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Postby Talisker » Thu Nov 25, 2010 10:32 pm

If MS was a metabolic disease increased blood flow would increase glucose and oxygen to the brain.
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Postby jacksonsmommy » Sat Nov 27, 2010 2:33 pm

Dr. Petrov (Bulgaria) has a theory that it is improved oxygenation of the brain.
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Postby Johnson » Sat Nov 27, 2010 5:33 pm

My undeveloped hypothesis of bacterial infection being at the root of "MS" and CCSVI might provide some explanation;

Invasive procedure triggers immune response - which may temporarily (or, more permanently) boost the immune system, and suppress the infection. The natural cortisone in the body is also part of the response, and there might be a temporary alleviation of inflammation, providing a remission. The heparins before and after the procedure might also play a part (were there not studies in using heparin as treatment, which showed some benefit?)

I get stuck that some people get better and stay better, some have moderate benefit, some none, some worse... What is the difference? Could it be differences in the immune system affected by a myriad of factors in each person's life - diet, stress, genetics, etc.

Why are they testing for Lyme disease at some facilities, and sending away those who have Lyme? They cannot be certain that those who test negative for Lyme are actually not false negatives.

I would be very interested to see extensive questionnaires before treatment that cover these factors and others. We might just find the key in that mound of data.

There are all sorts of diets aimed at "MS" - Swank, Best Bet, etc., and they all have common denominators (pH); cut red meat, dairy, sugars, carbohydrates, and other such elements that feed bacteria. Lyme bacteria prefer low oxygen, and can affect endothelial cells, so what's to say that they do not cause stenosis - to create the best environment for their survival and proliferation (hypoxic)? Body pH plays a role. Some bacteria control the pH environment within their cell walls, and render anti-biotics ineffective. Bacteria can be transmitted through the placenta, sperm, ova and breast milk too, which could offer some explanation of the congenital venous malformation hypothesis

No doubt that PTA can provide profound relief to many with "MS". It seems certain that there is a connection, but there are still so many different outcomes, that there must be something else involved. I have had two PTA's with very different outcomes. The difference is that the first was in June, with long, sunny, warm days (I am very happy at that time of year), and other than all of my "MS" symptoms, I was feeling very good. I felt brilliant afterward. I noticed the effects start to fade very soon (days) after, and I started getting a tad depressed (so did my immune system) as the symptoms returned. When I had my second procedure, it was October, with the days turning more gloomy (and my mood). I was sick, and exhausted before, and I had basically no improvement, other than slightly better balance. I was still sick and exhausted for weeks after, and I feel that I might better to have not even bothered with the second round. So, I am trying to kill off bacteria before my next PTA, and to be as healthy as possible. Hopefully it will be warm and sunny.

Just more mumbling from out of the box ideas inc.
My name is not really Johnson. MSed up since 1993
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Postby cheerleader » Sat Nov 27, 2010 5:36 pm

Dr. Dake's theory after treating Jeff was that increased oxygenation to the brain relieved low O2 due to venous insufficiency. Same thing he'd seen correcting superior vena cava syndrome.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
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Postby Cece » Sat Nov 27, 2010 5:39 pm

One of the doctors at the July Sclafani symposium referenced some diabetes research from the 90s, that showed nerve conduction (peripheral) improved when adequate blood flow was restored. (It might have been research on rats. Or humans, not sure.) This fits with your first point.

Improved blood flow may also reroute blood from travelling through the collaterals through the thyroid, thus allowing the thyroid to heal and restore proper functioning.

I think the mechanism for the immediate recovery -- the OR miracles, running up the stairs afterwards -- would be the effects of restored blood flow (immediate improvements in oxygen and glucose/nutrients to the brain). The long gradual recovery is from it creating an environment where healing can take place.
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