CCSVI improvements

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

Post by Rosegirl » Tue Aug 18, 2015 7:40 am

It’s been several years since my third CCSVI procedure. I could barely walk and that was the reason for treatment.

I was wondering, however, if others were like me and got unexpected benefits. Further, what if our doctors could use those to identify more accurately what controls what?

For example, right after my third procedure, I suddenly could read the teeny tiny print on a bottle of Advil that was four feet away. My vision wasn’t particularly bad before the procedure, but that was a significant improvement that has lasted more than three years.

The radiologist was stunned by that improvement in my vision. But when I had my annual eye exam, the ophthalmologist shrugged it off and said that happens all the time. He explained that a change in the amount of fluid and/or how it pressed on the eyeball changed the focal point.

Maybe an interesting follow up would be if the ophthalmologist explained this to the radiologist, they could pinpoint where and how the fluid pressure changed and then use that as a basis for more targeted treatment.

Has anyone else experienced anything like this?

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NHE
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Re: CCSVI improvements

Post by NHE » Wed Aug 19, 2015 12:29 am

Several people have discussed vision improvements following CCSVI treatment. I know that Cece is one. You may wish to read through some of her posts.

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Rosegirl
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Re: CCSVI improvements

Post by Rosegirl » Wed Aug 19, 2015 1:44 pm

At first glance, it would seem that CCSVI is all about flow, getting blood out of the brain at a normal, unrestricted rate. The initial treatment for patients was essentially opening veins that were clogged for various reasons. A much smaller number of treatments were on veins that had pressure or impingement from an outside source, such as a muscle, that restricted their flow, and in that case, sometimes more invasive surgery was required.

My question concerns the impact of the restricted flow on surrounding tissues. For example, doctors immediately recognize that a runny nose and watery eyes as being caused by sinuses that are swollen. Other related symptoms -- including a headache – show how other structures suffer from being squeezed by the expansion of the sinuses.

That in turn leads to an easy fix – take a decongestant. The headache is resolved by treating an adjacent structure.

It seems that our radiologists still don’t have much documentation that links symptoms to a blockage in a particular area. Nor do they seem to have agreement on a standard protocol: their differences seem to be based on their personal experiences. There’s still not enough of a data base of treatments to establish a common protocol.

But what if input from other types of doctors could help them pinpoint where to look, all just based on symptoms for things that radiologists don’t normally treat?

It would be wonderful if they could work with other types of doctors who might readily recognize a cause/effect situation, just like the ophthalmologist did in my first post. Then perhaps the radiologists would have confirmation and expectation that when removing a blockage at the particular place, eye problems so common in MS might stand a better chance of being resolved. And who knows what other symptoms could be identified and resolved with a standard protocol?

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Re: CCSVI improvements

Post by ElliotB » Wed Aug 19, 2015 3:00 pm

Why did you need 2 additional procedures after the 1st one?

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Rosegirl
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Re: CCSVI improvements

Post by Rosegirl » Thu Aug 20, 2015 4:30 am

My first procedure was at Georgetown University Hospital where their MS department did a small study of CCSVI procedures. I was the last of 30 patients treated. The study was stopped because they did not get the good results they expected. A review of the procedure images by other radiologists proved that the Georgetown doctor didn’t seem to know basic anatomy.

The second and third ones were done two and three years later by someone who had done many CCSVI procedures. Each time, there were major blockages (70-95%) that were opened, but my walking never improved.

I think CCSVI is an important and valuable tool for patients. In the coming years as our doctors do more procedures, share information and standardize on best practices, it will be even more effective.

Unfortunately, it does work for everyone and I have gone on to try other options.

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