Tag: <span>CCSVI</span>

The front page of online version of The New York Times has a link to “From M.S. Patients, Outcry for Unproved Treatment“. It reports on Multiple Sclerosis and CCSVI (aka Chronic Cerebrospinal Venous Insufficiency) providing information about patients and doctors who are trying the “liberation procedure”.

The most sobering sentence? “These critics warn that multiple sclerosis has unpredictable attacks and remissions that make it devilishly hard to know whether treatments are working — leaving patients vulnerable to purported ‘cures’ that do not work.”

I hang on to hope with the resignation of a skeptic and await solid science.

MS Research MS Treatment

A few tears caught me off guard early this morning. They slipped down my cheek while I read, of all things, a newsletter from a neurological clinic.

If you know someone with Multiple Sclerosis, you’ll want to read the newsletter, too, and learn about the CCSVI research that is being done at the Buffalo Neuroimaging Analysis Center. (I’ll offer a link to the newsletter at the bottom of this post.)

The tears weren’t because the article described a brilliant research technique or procedure. Although, the research is incredibly significant. Nor were the tears because of fancy wordsmithing on the part of the author.

A simple thing happened.

As I read the article about CCSVI, I felt the feather-light touch of potential hope. My heart swelled and my brain shouted, “I want my wife healed!” And my eyes dripped with the hope.

Then, of course, there’s reality. It’s still too early to know whether CCSVI causes MS. Nor does anyone know yet what the best treatment will be if CCSVI is determined to be the cause.

While the research continues, here’s what I do know.

I know I hate that she self-administers injections without any obvious return. I hate that she’s more miserable when she takes the treatments hoping to forestall future decline, than when she doesn’t and risks accelerated decline.

I hate that she has trouble walking and can’t run, that words don’t pop out quickly the way they once did. I hate that she has no stamina and that she takes medicines without immediate reward. I hate that she wakes most days with intense headaches. I hate that she can never go as far she wants for as long as she wants.

I hate Multiple Sclerosis. I flat-out, passionately hate it.

And so with tears behind my eyes, I pray the researchers exploring CCSVI are close to finding answers to questions about the cause. And I pray real, effective treatments will follow.

I’m waiting with tears behind my eyes.

Newsletter link (PDF File): Buffalo Neuroimaging Analysis Center CCSVI Newsletter

MS Research Reasons for Hope

If you’ve paid attention to information on the internet related to Multiple Sclerosis this month, you’ve certainly seen references to CCSVI or Chronic Cerebospinal Venous Insufficiency as a proposed of Multiple Sclerosis.

“Chronic Cerebrospinal Venous Insufficiency” is the name given by Dr. Paolo Zamboni to the backward flow of blood into the brain due to constricted veins which should drain blood from the brain. Dr. Zamboni is the Director of the Vascular Diseases Center at the University of Ferrara in Italy.

It’s too early to know whether CCSVI will be found to cause Multiple Sclerosis, but researchers are focusing their attention on it.

A good introduction to CCSVI is found in today’s BuffaloNews.com in an article titled, “Study could hold key to MS treatment”. Dr. Robert Zivaidinov is the Director of the Buffalo Neuroimaging Analysis Center and the principal investigator of the first major study of Dr. Zamboni’s controversial new theory that blockage in the veins that drain the brain cause Multiple Sclerosis.

Dr. Zamboni’s theory is controversial because it stands against the current assumption that MS is an autoimmune disease. The treatment of choice if Zamboni is correct is apparently angioplasty of the brain veins. This has been referred to as ‘liberation therapy’.

Important things to remember

First, while one is tempted to become excited about a potential cure for MS, I recommend against it. A lot of theories and potential treatments have been ruled out. Many more are currently being tested. If you had become excited about each, so far, you would have been disappointed by each.

Second, remember that a “cure” for MS will probably not undo the damage already done to the brain by Multiple Sclerosis … whatever the cause. “Cure” simply means an end to the disease process and progression.

Finally, if Dr. Zamboni’s hypothesis is found valid after further research, I imagine some pharmaceutical companies may have some explaining to do.

Here are links to additional information about CCSVI:

Study could hold key to MS treatment

New York researchers testing MS theory

MS Anger and Chronic Cerebrospinal Venous Insufficiency (with Video and Diagrams)

National MS Society Article with Questions and Answers

Etiology of MS MS Research MS Treatment