Wow, the information available on CCSVI on the internet is truly amazing! I have to admit: I did not research this topic as well as I could have. I did not read the study from Poland before my procedure. I did not realize all the excitement combined with incredible knowledge that is coming out of Georgetown. I am just reading them now and I can hardly contain myself. There is so much data available on CCSVI from around the world. I acted more on a deep gut feeling that CCSVI was real and was my path to healing. I was a little desperate as I felt myself sliding over the last year and didn't feel right with the auto-immune drugs. CCSVI just made sense to me; really good sense. Now reading the data, I am so excited for huge numbers of people to get healed/opened/freed!
After doing a little research, it seems that nearly all people with definite MS have CCSVI. It also seems that people with MS who have the procedure have less flairs over time and a better quality of life. Some get a lot of function back(improved neurologic symptoms). Some not as much; but most everyone has better energy and less decline.
I don't know where I will fall. I would love to run again even just a little bit. It doesn't really matter because I am touching something I have not in years -- excitement for living. I love having more energy already at 15 days. It feels great to think less about my gait and to be going faster and easier. I dream of more improvement, but I would be ok if this were the full extent of my return. I'm still "herky-jerky" and stiff but maybe I could flow a little bit again. I have hope and I have gratitude and those are friends I have only "tried" to have for years. Now they are just there.
Now onto the project of helping people with MS get liberated. The "proceduralists" are ready -- they are always ready to do what they do so well. They love to open pipes -- arteries, veins,ducts, whatever. They are just waiting for the whistle, their call to battle. SO now,we just have to get people tested. Conservative instutions may balk but they will be left behind. There are imaging centers all over this country(and the world) that have been waiting for this time. They love to image and that is what we need -- imaging. A picture is worth a thousand words and a new picture of an old disease is waiting to be unveiled. The data is flowing in and a conservative approach is no longer an option.
MRV's or ultrasounds -- that is the question. I think they both show the culprit in MS. MRV's are more accessible at this time because, in my understanding, these ultrasounds require special training and skill from the technicians. MRV's of the brain and neck have a standard protocol which requires no additional training. Only a few centers that I am aware offer this newer ultrasound so far. I am sure it will spread quickly. MRV is more expensive but people just have to get these veins looked at soon. So, do what you have to do depending on your location, finances, insurance but just do it!