Wednesday, June 23, 2010

CCSVI and I (hold on kids, this is a long one)

I'll admit it: I'm a MS message board lurker. Thankfully I haven't become a regular, commenting on the minutia of other people's lives and getting so sucked in that I forget how to live my own. In fact, the rare times I do post I don't often get responses, probably because I'm not a member of their online "family" (Facebook is a whole 'nother story. I heart Facebook.). I have an awesome, supportive, real live family - don't discard my questions because I don't respond to "IhazMS100"'s post about how much his or her life sucks. Ok, rant over.

Last December, in the midst of my anonymous eavesdropping, I noticed a post about something called the "Liberation Treatment". At first I chalked it up to the latest if-it's-too-good-too-be-true-it-probably-is fad. Then, the almighty Google opened my eyes. I'll spare you the boring details (if you want those, click here). But here's the gist, in a nutshell: a vascular surgeon in Italy found a prevalence of stenoses (or narrowing) in the internal jugular veins and the azygous vein that drain blood from the brain and spine - two areas affected by the lesions that cause disability in Multiple Sclerosis. The narrowing causes a build up of old blood and lack of fresh blood flow. This also causes iron deposits which are thought to bring on the MS symptoms. It's officially titled CCSVI or Chronic Cerebrospinal Venous Insufficiency. With a simple diagnosis and outpatient treatment, MS sufferers were recovering lost abilities and returned to the lives they lived pre-diagnosis. Hot dog!

(It's not a cure, but it has scratched at the wide surface of unknowns about MS and it's a huge leap in the right direction.)

This idea has essentially turned MS up on its head. Doctors tend to adhere to the established idea that MS is an auto-immune disease and that the body is attacking itself. So were the neurologists on board? Not so much. Except for a good handful, CCSVI is widely ignored by the MS medical community. Here's why that puzzles me: if anyone, MS or not, had a blockage that wasn't allowing proper blood flow to the brain and spine, shouldn't that be corrected? Are the doctor's livelihoods threatened? Are they forgetting that hippocratic oath they took way back when? Are they being courted by the MS drug companies? Who knows. All I knew was that I wanted to make it happen. As soon as possible.

In addition to my message board rant above, I am also anti-support group. Who wants to attend a giant pity party with burnt coffee and stale cookies? No thanks. But several years ago a friend of mine said, "Hey I have a friend that was just diagnosed, can I put her in touch with you?" So I finally got in touch with a real live person with MS that was my age. She looked really familiar to me, so I asked if I knew her from somewhere. She said, "Um yeah, Susie. We were in P.E. together in the 7th grade." Doh! I felt so stupid.

Awhile after that, one of her best friends was diagnosed so she joined our "group". Then, another friend of mine said his friend's wife was just diagnosed so she joined the group. And finally, another friend of mine was diagnosed. All of us in our thirties. All of us in the same town. All of us connected in one way or another. Sad but good, at the same time. We meet once or twice a year for mild kvetching, story sharing, and for reassurance that we're not going crazy. Burnt coffee and/or stale cookies not permitted.

We're young, open-minded, forward thinking individuals so obviously CCSVI came up. We met before Christmas and then began having fairly frequent phone meetings to talk about the latest news. At that point, there was only one place in the US that was doing the MRI Venography diagnostic test with the correct protocol and it is in Buffalo, NY. Not sure if it would be covered by insurance AND not sure what I would be able to do with the test once I had it, I briefly entertained the idea of going to Buffalo and then decided to wait. The timing was bad for me. End of story. If it was meant to be, it would happen on its own. Two of the girls from our group took the trip up there - both found they had blockages.

I let it lie for a few months - work, trips, and life happened. It fell by the wayside. Then in April, I had to have an ultrasound done on my kidneys (for something else; no biggie). From the research I'd done, I knew that Interventional Radiologists were the docs to talk to about getting treated. So, I went to the website of the testing facility I planned to visit and found that, sure enough, they had IRs on staff. I took a gamble and decided to call. Worst case scenario they'd dismiss me as a crazy lady. I was okay with that.

When I called, I got the receptionist on the line. One of the doctors just happened to be standing by the desk. She put her hand over the phone and I listened to a muffled conversation, attempting to make out the words. Then the doctor picked up the receiver and talked to me about it. I gave him my schpiel and he referred me to a neuroradiologist on staff. I called him and they called back within half an hour to set up a consult within a week. To stay I was stoked doesn't accurately describe my feelings at that moment. And so the obsession began...

So the consult went well but there was some hesitation on the IRs part because it's new territory. He wanted to get IRB approval from the hospital to make sure it was all on the up and up. The only problem with that? IRB approval takes a long time. Longer than I was willing to wait. I gave it a good six weeks then I battened down the hatches and continue my mini-crusade.

I should take a moment to point out that there has been a huge online grassroots movement for CCSVI - building awareness, educating people, providing resources on where you can get tested and treated, etc. Someone (that I am eternally grateful to) posted a link on Facebook to a professional association page with a handy "doctor finder" link. I searched by city, then by specialty (venous disease) and got a decent list of doctors to contact. I thought the easiest way to start would be to send an email, so I picked three and typed away. Lo and behold, all three responded within 24 hours. Talk about restoring my faith in the medical community. I was elated and anxious to see how it would all play out.

Within two weeks I had a consult scheduled and my procedure was scheduled for a week after that! Booyah.

Was this easy? Yeah, that's the understatement of the century. I don't know if you (the reader) are spiritual or believe that there's a greater force in the universe at work for better or for worse. But, I can't deny that God was on my side with this one. Big ups to the dude in the sky.

Then it was time for the waiting and the doubt and the nerves and the hope and the fear and the thoughts of limitless possibilities to set in. Stay tuned.

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