This Is MS Multiple Sclerosis Knowledge & Support Community

hi. i have some questions i am hoping someone can answer for me. we know the facts now about what ccsvi is and that it is related to multiple sclerosis so i have to ask now:
1. what are the consequences of having ccsvi and not being treated for it? what can happen medically until it is fixed?
2. how long does it take for symptoms to show of ccsvi? years?
3. can you live with this condition indefinitely?
4. can it be fatal?
5. can it lead to other medical issues if not treated properly?
6. if and when test results come back with stenosis of one or more veins, how soon is it recommended to do the surgery? must it be done asap or can it wait and if so, for how long?
7. have any venous issues been shown to be cause of death in people with ms? if so, could that be a medical argument for insurance companies to comply with this procedure for ms patients who have proven stenosis/reflux.

thank you so much....
-kimmy

MamaGirl... You have asked good questions. I urge you to read further on this board and then CCSVI will "click" into place for you. Be sure to read and try to understand everything on the "CCSVI - just the facts, Ma'am" and the "CCSVI Research here" stickys at the top of this board. This board is about the correlation between CCSVI and Multiple Sclerosis. CCSVI all by itself (i.e. without an MS diagnosis) would be a whole other ball game. Time till tell how closely correlated CCSVI and Multiple Sclerosis are. If you changed all your questions, and replaced CCSVI with Multiple Sclerosis then you may be asking the same questions. More research and time will tell.

ozark

Thank you so much for your response. Yes, I believe that in time many of our questions will be answered; finally! My concerns right now is that now we KNOW about the CCSVI in ms patients and that is an awesome thing but does the condition get progressively worse? It cannot get better on its own so what happens with these veins as we await "fixing" them? And what happened to all those others before us who lived with MS most of their lives? Were the ones who lived an average age able to live with their veins malformed all those years? Did those who passed on earlier than average lose their battle because of CCSVI and what would be the major difference between those who survive with malformed veins and those who do not? I know I have alot of questions but whether or not CCSVI is the "cause" of MS or vice-versa and whether or not CCSVI is a "cure" or not, it is a fact that most probably have these damaged veins right now and need to learn about what the risks are that come along with it. It seems so wonderful, so miraculous to finally hear some good news and I don't want to break that jubilation we all feel but I do have questions. I have written about my cardiologist that had a report from a scan on me almost 3 yrs ago stating I had cardiomegaly and borderline pulmonary vasculature and he dismissed it along with many symptoms I was and am suffering from currently. I cannot help but get the feeling now it may have something to do with CCSVI.... and that is where all my questions are coming from. I don't know where to get "these" answers from but I understand what you are saying and I thank you. Maybe I can write to Dr. Zamboli or Dr. Dake. I really appreciate your answer. Thank you again.
-MamaGirl

MamaGirl,

There is a new paper coming out from Dr Zamboni, pretty soon I hope. All of the researchers are swamped with people contacting them. I suggest that you keep learning here, and take what you learn to your own doctors. We need to get more doctors interested and online with CCSVI. One thing I have been trying to do in St Louis is to get the neurology community and the interventional radiology interested in doing the doppler imaging here. I am going to Detroit to be imaged by Dr Haacke's protocol. But that is just a research study. I am coming home with my scans and have an appointment with an interventional radiologist.

Also many of the questions that you are asking don't have any definite answers yet. So spreading the news and getting your own doctors on board may be your best bet.

But you must do what feels right to you.

ozark

ozarkcanoer wrote:MamaGirl,

There is a new paper coming out from Dr Zamboni, pretty soon I hope. All of the researchers are swamped with people contacting them. I suggest that you keep learning here, and take what you learn to your own doctors. We need to get more doctors interested and online with CCSVI. One thing I have been trying to do in St Louis is to get the neurology community and the interventional radiology interested in doing the doppler imaging here. I am going to Detroit to be imaged by Dr Haacke's protocol. But that is just a research study. I am coming home with my scans and have an appointment with an interventional radiologist.

Also many of the questions that you are asking don't have any definite answers yet. So spreading the news and getting your own doctors on board may be your best bet.

But you must do what feels right to you.

ozark

Thank you Ozark... what you say makes alot of sense and I appreciate the feedback. Good luck with your scans. I am awaiting the return of my doctor so I can speak with him and show him what is happening; I am sure he is unaware. I will continue to read here as this is a marvelous site to get information and just to keep up to date. Also, the comfort here is amazing since we all share common ground. Thank you again...
MamaGirl