Something I've always known that I was going to have to do was travel for my follow-up care. I knew that I wouldn't be getting any from my MS neurologist here in Winnipeg and asking my family GP would be utterly useless as well, knowing where they both stand on the topic of CCSVI. So when Dr. Sandy MacDonald was granted IRB approval to conduct observational studies for Canadians who traveled abroad for treatment, I knew I wanted to go to his clinic.
As I told you a few blogpost past, I had an appointment booked at Barrie Vascular Imaging in Barrie (obviously) Ontario at the end of April. Being that I live in Winnipeg, we had to fly into Toronto and drive the hour north up to Barrie for my Friday morning appointment, so quite a long haul for a single appointment. Sheldon and I actually flew into Toronto on a Tuesday night, where we rented a car and visited Niagara Falls / Niagara-On-The-Lake before heading up to Barrie for the scans on Friday. (Might as well make a little trip out of it, right? Niagara Falls has been on my to-do list for a while now and I thought this was the perfect opportunity.)
Niagara Falls, Ontario, Canada
Maid of the Mist boat ride, Niagara Falls
My appointment came on Friday morning and we had no problems finding the little clinic. Being that it' a vascular imaging center and wasn't actually useful to MS patients before the discovery of CCSVI, there were many people there for lots of different reasons. That being said, I filled out a bit of paperwork and was seen right away. Unfortunately Dr. MacDonald himself wouldn't be seeing me, however I feel like I got the next best thing: Dr. MacDonald's technologist and chief vascular sonographer, Angela Lagace. Angela was absolutely wonderful. She was welcoming and talkative - wanting to know where we traveled from and how I've been feeling since. She told us that they still see around 10-15 CCSVI patients daily! Mostly people like me, just wanting follow-up at different intervals, but also seeing new patients every once in a while too (new meaning people with MS who may be curious to see if they have blocked veins before considering treatment).
Angela was trained by Dr. Zamboni and his team in Italy in early 2009, then went back to Italy later that year to teach. Since then, she's also taught various centers in the US and some in Canada on the protocol for CCSVI techniques. The ultrasound I got that day cost $250 and took about 15 minutes. The jelly was cold and disgusting and was put all over my neck and face. She scanned both sides of my neck and the side of my face, laying down and then sitting up at 90 degrees. She said she'd be sending the results to my doctor in California, but could also forward me them to me if I wanted. Of course I wanted. She also warned that the results would consist of a bunch of mumbo-jumbo I may not understand, but that the last couple lines would be the most important. It would either say either NORMAL or ABNORMAL.
Now before I get to the results, I wanna explain how I was actually torn between which results I truly wanted to hear. You might think I'm crazy 'cause who in their right mind wishes for abnormal results, however abnormal explains a few things that normal doesn't. Abnormal could explain my flair up over Christmastime... abnormal could explain my muscles spams back a few months ago... abnormal could explain my random muscle weakness... Abnormal could explain my I'm never 100%. Normal wouldn't explain much. Normal would mean that my veins are exactly where and how they are suppose to be.
Well my results were normal.
No evidence of DVT (deep venous thrombosis).
No venous insufficiency is noted in the internal jugular veins at 0 or 90 degrees.
Negative values for cross sectional areas of the internal jugular veins.
Normal valvular B-mode.
No Zamboni criterion met, study negative for CCSVI.
I'll admit I don't know exactly what all of the report meant but I got the gist of it - nothing has changed since I was treated. I'm happy with those results for one reason: I don't have the blocked vein odds working against my favor. Did CCSVI cure me? Probably not. Do I regret it? Not for a second!
Standing outside Dr. Sandy MacDonald's clinic, Barrie Vascular Imaging
I'll be traveling back to Barrie for my one year follow-up.
H. xo
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