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.

Why we have no bunnies in our backyard

Last year we had a whole family of bunnies in our backyard. The babies hid among our lilies and assumed they couldn't be seen. They were so cute -- I hope they survived!

This year is  different. We haven't seen any babies (although our neighbor said he saw a bunch of dead ones), but an adult rabbit took up residence under our lilac bush during a rainstorm recently. He and his mate did some hopping around but I haven't even seen them lately (guess bunnies don't like cicadas).

The other day I spotted what may be the reason rabbits no longer frequent the McDonald backyard...

Our neighbor's cat

Oh no, not a minivan!

The Soccer Mom minivan

I swore I'd never have another minivan. I drove these vehicles for years when the kids were little and even I had to admit they were perfect for hauling around the girls and their friends.

Once the kids were grown up and out of the house with no more soccer games or sleepovers, I traded the minivan for a sleek black Volkswagen Passat, a cool-looking car that had so much pep I

A cool-looking car

ended up with 2 speeding tickets in 2 days (the last one in Iowa with my mom sitting bemusedly beside me wondering what that nice young man could possibly be doing).  The car was great, but was plagued with so many problems, not the least of which was it always looked dirty, that after a few years I traded it in.

I still loved Passats, but this time I was smarter about color choices, opting for a light blue station wagon. This turned out to be perfect, with a storage area big enough to haul my (disassembled) scooter and a left-foot accelerator so that I was able to drive, even though my right leg has become pretty useless.

So why would I want to get rid of this sporty little car? Well, first off, my balance has gotten so bad that I'm scared I'll fall each time I get up from the driver's seat to get my rollator out of the back. The picture I imagine of me sprawled in the middle of the Shop and Save parking lot is not a pretty one.

In addition, having a van would allow me to take a scooter in my vehicle without taking it apart. There's a wonderful animation here showing how it works. If I needed to go shopping, I'd simply ride my scooter to my van, hit the remote and voila the side door would open, then the ramp would fold down as the van "kneels" to get even lower to the ground.  After riding up the ramp, parking my scooter and transferring to the driver's seat, I would hit the remote again, folding up the ramp and closing the door.  Amazing -- yes -- but amazement with a pretty hefty price tag.

My freedom!

Unfortunately, a handicap conversion costs about $20,000 on top of the price of a vehicle, and sadly, only minivans and full-size vans can be converted.  For a long time I rejected the notion that after we shucked out over $30,000 all we'd have was a minivan. But in the end, I decided it was worth it.

Yes it's hard to make a change, but I'm optimistic that a van will make a huge difference in my independence and quality of life. I'm fortunate to live technological advances that make a disabled person's life easier. We pick out the van next Saturday and I can hardly wait!