Life Since CCSVI

Today I got an e-mail from Synergy asking me to complete my 6-month 'Post-Procedure Research Questionnaire'. This is a questionnaire made up by Synergy, completed by patients at the 1 week, 1 month, 3 months, 6 months, 9 months and 1 year mark, post-procedure.  It's a way for the doctors at Synergy to continuously monitor their patients expectations and results, by collecting information at the specific time intervals during the course of their care, being that most people have traveled from afar and are unable a face-to-face follow-up appointment.

That being said, there is one canadian doctor who's been interested in CCSVI right from the beginning, and that's Dr. Sandy MacDonald. Dr. MacDonald is a Cardiovascular Thoracic Surgeon who works out of Barrie, Ontario. When the CCSVI story broke in 2009, he was the only canadian doctor to perform this procedure on 5 of his own patients here in Canada before being shut-down. Today, he communicates closely with Dr. Zamboni's team and other centers in the U.S. learning more an more about the condition. This past fall, he was granted IRB (Institutional Review Board) approval to conduct an observational study using ultrasound to do follow-up on patients who've received treatment elsewhere. Even though this approval doesn't enable him to perform the procedure right now, at least it's a way to track initial finding and create statistics while we wait for Canada's approval to move forward.

Which brings me to my exciting news that I actually have an appointment to see Dr. MacDonald at the end of the month. April 27th to be exact. Sheldon and I are flying into Toronto, going to go to Niagra Falls for a few days, then drive up to Barrie for the appointment. The cost of the follow-up scans come out of my own pocket (along with the cost of my ride on 'maid of the mist' - weee!), but what's another couple hundred buck in medical bills at this point. This will be my only form of follow-up care since having the procedure done in October '11.

I'm very anxious and interested to see what shows up on these scans. It seems like I haven't had quite the same amazing benefits from my procedure as many others, therefore I'm wondering if my neck veins have possibly closed back up, preventing that optimal blood flow which I had after my procedure. If they are back to their original constricted form, its definitely says something about the connection between MS and CCSVI. Personally, I don't plan on rushing back to get it done a second time quite yet (as many others have done themselves). It's not that I regret my decision to have it done in the first place, I just think that experimenting once was enough for me, and I'll be waiting until it's readily available in my own country before rushing under the knife again. I do vow, however, to do my part and become more active in pushing my government to get things moving in the near future.

As for how I've been feeling these past few months, there hasn't been any major things to report. My life is still a constant roller coaster... one that I'm constantly learning the twists and turns of... And getting better at being tossed around with a big, happy smile on my face (if you can't tell, I'm a little negative today). That being said, just because I'm having a lousy week, it shouldn't take away from the 22 days straight that I was feeling like a hundred bucks (<--that's like the smaller, pocket-sized version of a million bucks, and probably all I'll be able to attain anymore. But I'll take it, none the less!). Those 22 days were pretty awesome, I must admit. Any time I'm feeling so good, I'm afraid to think about how good I feel... let alone say it out loud. I've probably said this before, but anytime I speak it out loud to a doctor or to Sheldon or my parents, it tends to be taken away from me a day or two after. I don't know who's controlling all that "up there", but I've learned to be humbled by the 'feeling good' attitude I'm so seldom awarded.

As I've been explaining all along, neurologists (my own included) don't tend to support this new theory of CSSVI, given that it's a total paradigm shift in the way MS has been studied for many years now. Therefore, when I reported to her that I was having some pretty intense symptoms after Christmas, she was quick to push yet another drug on me, all while giving me the 'I told you so' attitude. I haven't been on any MS drugs since August 2011, which is my longest stint to date without drugs since my official diagnosis. I don't know if it was the lack of success from my procedure, the negativity I was feeling from my sudden onset of symptoms, the panic regarding my disability in the future, or maybe I was just having a bad day, but one morning I woke up with  a change of heart about the use of these disease-modifying drugs. I was scared that I was making the wrong decision to stay off all drugs only 4 years into my disease. Being that slowing down progression is the only real hope a person living with MS has, I felt like I wasn't doing everything in my power to control this disease, while I still could. I mean, Zamboni himself has stated that staying on our disease-modifying drugs is a big part in the recovery. So that's when I made the decision to reconsider the options given to me last August after my relapse, and to ask to start Gilenya, the first oral MS pill.

To be continued...

H. xo