Sunday, May 16, 2010

Some Questions From my Sister in Law, Kim:
KIM: Is the facility in Albany going to be part of a new clinical trial, or will it treat patients as part of a registry for the Liberation Treatment. I ask because I am sufficiently convinced from listening to the researchers (from the April 14th forum) that a registry should be used in future liberation treatments in order to keep track of prior MS status, treatment for CCSVI, and for post-treatment follow-up and information sharing.
ME: After watching the forum online (, I definitely agree that there needs to be, at the very least, a registry for those being tested and/or treated for CCSVI. I am still waiting for the Dr. to contact me so I will certainly be asking him that question and I'll let you know what he has to say.
KIM: But unlike Dr. Zivadinov, I don't think halting the CCSVI treatments is necessary or reasonable. On the other hand, to have one death out of 30 or so procedures is enough to give me pause concerning your treatment. As far as I can tell, though, that death resulted from the use of a stent, which Dr. Zamboni was adamantly against using compared to the more simple angioplasty.
ME: The dr. that I am planning on being seen by does balloon (angioplasty) as a first option, and a stent as a last resort if the vein is too collapsed. I really hope that he doesn't have to use a stent if I do have CCSVI because, as Dr. Zivadinov as well as Dr. Zamboni have said, we don't know the long term effects of a stent in the jugular vein wall. So this concerns me especially for younger patients such as myself, who will have that mettalic piece of equipment in my vein for a long time. As I understand it, artery walls are much different than vein walls. Artery walls are more muscular in nature, and vein walls are much thinner and fibrous in nature.

Thanks for your questions Kim, and more importantly, thank you for your love and support through this process.

1 comment:

  1. Thanks for your response, Toby. I am anxious to hear what the Albany dr (name?) says about the procedure. I love you too.