Wednesday, May 26, 2010


I had heard about CCSVI vaguely from people, not the name just that they'd heard something big had been found... I didn't put much into it as over my 15 years with this I've heard/read all sorts of things. If you have M.S. I'm sure you have too.

Anyhow in November I saw the W5 story that introduced me to CCSVI. All of what I heard and saw seemed very real, very understandable and ignited something in me.

I reached out through facebook and added CCSVI to my Google news alerts so anything that popped up on the net with CCSVI in it would be before me. I also emailed my neurologist, Dr. Paul O'Connor of St. Michael's Hospital in Toronto, ON. His response gave me more hope as he did convey interest in studying it etc...

I had an appointment with my neurologist a few weeks later and asked him about it in person, his tune seemed changed but from what he told me reasonably so. He said he'd met with Dr. Zamboni and found the man knew nothing about conducting studies and that patients can basically learn how to do better with tests after their given one time, and so the improvements he saw may have just been due to patients learning how to do better in the tests. He also told me it would hold no hope for me anyhow as I was "progressive." This was news to me and so startled I asked had things changed was I no longer Relapsing Remitting? He said I was but that my RRMS was progressive - a little double talkish for me. I left that day feeling somewhat defeated but I wasn't giving up on keeping up with the growing mounds of information being collected and published on the internet.

Now given ANYONE can post just about ANYTHING on the internet but there are more credible sources and less credible sources and we have to keep that in mind when filtering the information just as we would in a social grouping.

The more I learned the more hope I had about this and I chose to find out if I had CCSVI. Then I found out I couldn't get tested here without paying for it. Furthermore I had to make sure the people doing the testing knew how to do it because it wasn't your regular everyday doppler scan.

Then I met Diana Gordon. She had mentioned being tested in Barrie... BARRIE?!?! I live near Barrie!!! So I asked her to please tell me where this magical place was and she obliged but under the strictest confidentiality so that this wonderful clinic run by Dr. Sandy McDonald would not be overrun. DONE! It killed me not to be able to shout it from the rooftops but I was just going to have to deal with that.

March 23rd, 2010 I had my doppler at Barrie Vascular Imaging with a lovely tech named Angela. My family was allowed in to watch, It took about a half an hour and she couldn't tell me anything. I had to wait to get the results from my family doctor.

About a week and a half to 2 weeks later I had my results... I met the criteria for CCSVI. My right jugular and subclavian were stenosed and so was my left subclavian. So there we go I have what they say people with MS appear to have in great numbers. The first thing that almost completely across the board we share in this disease other than being human!

Now onto finding where I could have this fixed because my own country wouldn't do it for people with M.S.. I have veins that are not working properly and I can't have them fixed because I have M.S.? How wrong is this? They want studies to prove it can help with M.S. before they'll fix it - well what if I didn't have M.S.? Then it could be done. So why do we have to even have M.S. as part of this? Why should we be prevented from having proper blood flow which can't do anything bad?

Oh well the search begins for "liberation" (the term coined by Dr. Zamboni for letting the blood move freely in the veins again).

No comments:

Post a Comment