CCSVI and the perfect storm

For about a week, I cautiously hoped that a new procedure might help my MS. A friend who does medical PR told me that a local vascular physician was following research on a theory that has turned the MS community on its head: CCSVI.

The CCSVI or chronic cerebrospinal venous insufficiency theory was developed by Italian doctor Paulo Zamboni a few years ago. It posits that people with MS have blockages in their neck veins that force blood back into the brain, leaving iron deposits which eventually become MS. Called the Liberation Procedure by MSers, a balloon angioplasty could open up the neck veins, "liberating" the individual from the scourge of MS.

That's the theory anyway and the wealth of unfiltered information on the internet set the online MS community on fire. Suddenly, there was hope for a better life, a different future than that envisioned by most of us -- a gradual loss of all our bodily functions.  That's the kind of scary thought that wakes you up at 3 a.m. and causes you to contemplate the options for nursing homes in the area. 

The impact of all this information on CCSVI was immediate.  Patients traveled to other countries to have the procedure done; before-and-after videos appeared on YouTube showing miraculous results; some unscrupulous doctors made piles of money off of desperate people. All this happened before the theory had a chance to be tested by the medical community.

Wheelchair Kamikaze

What little data that is available shows that some people have great results from the procedure, while others see no change. Marc, an MSer who writes a blog called Wheelchair Kamikaze, has followed all the research and written some extremely insightful posts on CCSVI.

In my case, an ultrasound showed a significant blockage in my left neck vein, so I immediately leapt to the conclusion that the vein could be unblocked by a balloon angioplasty and soon I too could be on YouTube, running downstairs with a smile on my face.

A candid talk with an extremely forthcoming surgeon Tuesday brought me back to reality. The surgeon was willing to perform the procedure, but, since it isn't covered by insurance, he said he would hate to see us spend an inordinate amount of money on a untested procedure (there are a few ethical physicians around). My further internet research confirmed what he said: CCSVI might have some credence but it's really too early to tell.

The Perfect Storm

To me, the mystery of MS seems to be caused by a perfect storm: a genetic flaw (such as misshapen neck veins that become blocked) combines with an environmental stigma (such as the shortage of the "sunlight vitamin" D) then the disease is triggered by a virus (such as herpes or Epstein Barr). New research findings are coming out almost daily and I believe we are not far from understanding what causes MS.

In the meantime, I remember that life is not about a miracle cure (even even though heaven knows I would like one). Instead joy comes from the things that God has blessed me with -- a loving husband, beautiful children, thoughtful friends, nature, ease. Even though I have a disease, He loves me, because I am his child. There is great comfort in that certainty.