Rebi, CCSVI and My Cart

So much on my mind these days!

First of all, I didn't use Rebi last night. I'm taking my moms advice, and waiting for the nurse to come and instruct me. I sure hope that she calls us soon!

Oh yes, and did I mention that the four cartridges of Rebif (12 doses) cost less than 12 pre-filled syringes? Jason and I thought for sure that it would cost more - being *NEW*.

I didn't really have time to enjoy Rebi last night anyway. I have had "CCSVI" (Chronic Cerebral Spinal Venus Insufficiency) on the brain: in particular, doppler and MRV (like an MRI but of the veins) testing. There is a surgery/medical clinic in Vancouver, that is offering MS patients the recommended protocol for diagnosing CCSVI. I shouldn't say "offering" as you do have to pay for the tests. And if you do have narrowing of the veins, the clinic does not offer the "Liberation" treatment (opening the veins through angioplasty or stents). The "Liberation" treatment is not available in Canada.

*can you see me rolling my eyes?*

But should I have the tests, and discover stenosis...I could go to New York, or Poland...or even India to have my veins opened up!

*insert false excitement here*

Had I written this blog yesterday, I would have told you how the idea of the Liberation treatment scares me. At the time, I was under the impression that the clinic in Vancouver offered a complete package: testing and repair if necessary. I knew nothing of cost or time-line, but I was mulling over the idea of adding my name to the appointment list. I envisioned a waiting list of over a year, and a cost upwards of $10 000.

I also envisioned myself with narrowed veins. From there, I had the "Liberation" surgery... I felt...well, liberated...a changed of the bricks weighing down my limbs...out of the fog that smothers my brain...energized. And so I envisioned myself returning to work...doing everything that I miss, and filling in the missing pieces of my current life.

And months later...crashing. Falling back on to the couch...the fog rolls in, the bricks encase my legs...and I no longer have disability insurance. It's a nightmare.

My current apple cart - no matter how good the wheels, at least rolls along. A bit wonky, but it works. Why would I want to upset it?



Sandra said...
March 20, 2010 at 12:18 p.m.

Hi Emily,

We are all on this CCSVI roller coaster. The one undeniable truth is we have bonded as a community and are sharing our experiences. Each one of us taking a step forward is a step for all of us.

I am the admin for a Facebook group doing just that -- exchanging info on CCSVI resources and supporting each other. I also was recently scanned in Vancouver and posted my thoughts (and pictures) of that too :-)

If you're on Facebook, please feel free to join in our conversation. You can post links to your blog, reply to others, or simply lurk in the background. The link is:!/pages/Victoria-Vancouver/CCSVI-at-UBC-MS-Clinic-Information-and-Support/182832983940

I hope we all get some answers soon!


Dabble and the Mad Sow said...
March 20, 2010 at 4:19 p.m.

yes, my fears exactly. Spend all that money, and then feel better for a few months, and then get hit with it all again, as if new. I don't know if I could take the shock's taken me so long to adjust to how I am now...
good luck with the Rebif. I'm still on Copaxone as long as I can figure out the drug coverage...

corina said...
March 20, 2010 at 5:02 p.m.

it's probably a better idea to look at one step at a time rather than the whole journey...not so overwhelming. i'd like to offer my services as your chaperone to vancouver or wherever the search for a cure takes you :)

Little bits about my life with MS

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