Instant Results Followed by Slight Setbacks?

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

Instant Results Followed by Slight Setbacks?

Postby daniel » Mon Mar 29, 2010 7:18 pm

Hi All,

I've been reading a lot more of people's experiences with the procedure and it's been mentioned a few times that it's usually a matter of 2-steps forward and one step back... does anyone know why this would be the case? ie. physiologically what might be causing this?)

Has anyone not had any setbacks after the procedure?

Dan
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Postby Katie41 » Tue Mar 30, 2010 3:06 am

Hi Dan,

We have been speculating that some of it may be the euphoria that accompanies the joy of experiencing improvements that were not thought possible. Additionally, during the procedure you have nasal oxygen. This is providing more 02 than usual for your brain, in addition to the increased 02 possible due to the initial ballooning or stenting. All pure speculation.

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Postby cathyb » Tue Mar 30, 2010 4:48 am

Katie,

Would you mind letting me know where I can find the information you mention in your post (theories on why people seem to have two steps forward, one step back)? I have been looking for a thread on this very thing for a while (How people are doing, specifically, any MRI results post-liberation, relapses post-liberation, what the two steps forward are, etc.) I keep crawling the tracking project, and its very helpful, but not everyone updates.

THANK YOU! :)
Cathy
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Postby lucky125 » Tue Mar 30, 2010 6:40 am

I did not have nasal oxygen. My only initial symptomatic improvement was immediately warmer fingers and feet. It will be four weeks tomorrow, and that has not changed. :D

At about 2 weeks, I felt my balance being better for 5 days straight. Then I'm afraid that I began overdoing it and it began being less predictable. Now it's in and out. But before liberation, it was always out. So that's still better!

I have not choked in 4 weeks. That's impressive and can in no way be credited to euphoria, or placebo.

Lots of this is a mystery. No two people's MS is the same, nor is their stenosis, so it stands to reason that their recovery would be vastly different, too.

That's why I, and many others are keeping blogs to track our experiences. It helps me see where I'm going, and hopefully will help others watch along with me.

Nicole
Liberated at Georgetown U. 3/3/10. Subsequent procedures at U of Maryland with Dr. Ziv Haskal 7/30/10, 12/2/10, 5/11/11. http://myliberationadventure.blogspot.com
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Postby Katie41 » Tue Mar 30, 2010 8:57 am

Hi Cathy,

It is all speculation, not even theory. Just musings from some people currently in Poland.

Katie
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Postby chrishasms » Tue Mar 30, 2010 10:27 am

I think that as the body purges the body of the access Iron it would stand to reason there would be fluctuation. I would think as Iron dislodges from one place it would make you feel better, but then when it lodges somewhere else on its way out you would have a step back.

I think the brain learns something, puts it on the back shelf, then goes and learns something new. Then when it has enough info to complete the package so to speak, the brain then brings back what it has learned and uses it regularly.
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Postby lucky125 » Tue Mar 30, 2010 10:38 am

Interesting theory, Chris. However no one has yet monitored the iron levels of patients pre and post Liberation. I think it is waaaaay too soon to suggest that changes in my body have anything whatsoever to do with iron.

We don't even know for sure if, just because veins have been opened, iron naturally leaves the brain at all. It might be so deep in the tissue, it isn't going anywhere!

Just one more of the thousands of new questions for scientists to explore thanks to Dr. Zamboni's findings!
Liberated at Georgetown U. 3/3/10. Subsequent procedures at U of Maryland with Dr. Ziv Haskal 7/30/10, 12/2/10, 5/11/11. http://myliberationadventure.blogspot.com
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