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It is interesting about the location of the occluded stents and the difficulty of doing any bypass or reconstruction. My stents are very high near my ears. My neurologist was so concerned about the procedure and the occluded stent that he ordered an MRI to see if my brain was affected. Apparently al...

I also have two occluded stents. It's nice to know that this reconstruction surgery can be done.

ozarkcanoer

I used to come here on a very regular basis. I was treated for CCSVI August 17, 2010 by Dr H at the University of Maryland Medical Center (many of you should know who this is). He found narrowing in both IJVs and a twist in my azygous. He inserted a stent in both of my IJVs very high up near my ears...

dania, I asked my IR what the blockage is and after pushing the question he answered, could be blood, scars or both. In any case he did say that whatever it is that it is so hard a diamond drill couldn't pierce it. I am concerned that no one is researching how to fix these problems. My local IR told...

Cece, Both of my IJV stents are blocked :( I knew about the first one in March when I had my second procedure. When the IR hit the blockage with his probe I could feel my shoulder and arm shake in response. This was my left IJV. He checked my right IJV and it was OK. In June I had an ultrasound by a...

I used to post here on a regular basis starting in 2008. My husband and I are active supporters of the BNAC research, financially and otherwise. We still are. I had the CCSVI procedure performed last August (2010) and again March (2011) and am in the most unlucky situation of having occluded stents ...

dania, I have been around TIMS/CCSVI off and on since October 2008. Very early on I was PMed out of the blue by a disgruntled person who thought the tone of my posts was not up to his liking. Actually I got several PMs and stupidly I responded since I truly wanted to know what I had said to upset hi...

Could we make this an online event or events ? If there were an auction I could contribute by being a buyer :) Since I live in the midwest USA, any event on the east or west coasts I cannot participate in. For example, I bought one of the beautiful CCSVI bracelets and I would most certainly bid on a...

Questor... You hit the nail on the head. It will really take years for CCSVI to be studied. I know that all I can do right now is to absorb what is being said and help with the research in a very small way :) Human beings are notorious at predicting the future. Little did I know last year that this ...

I respect and support BNAC and Dr Zivadinov in all the research that they do. I have contributed personal money to their research plus my sister-in-law and I held a MStery party last summer that also raised a substantial amount of money for BNAC research. It is a mystery to me why so many people are...

LR1234, I am still taking Plavix. Now that I know that both my jugular veins are blocked I need to ask one of my IRs if this is necessary anymore. I am going to continue until I get a good answer from one of them.

ozarkcanoer

Lyon, I hardly think you are the bad guy. You are just a "gadfly" :) I am feeling better so I haven't lost, really. But I felt really good for about 2 months after the procedure. I mean "NORMAL". I'm no longer "NORMAL". Fatigue back, headaches, etc... just much better so I guess I didn't lose really...

My doctor told me it is blood that occludes the stent plus scar tissue. This is a professor of medicine and a top-notch guy. He does procedures but not with stents. He explained to me just how little they really know about this CCSVI. He was with Dr Dake et al in Chicago (actually both my doctors we...

I just had an ultrasound on the stents in my neck. I already knew that my left stent was occluded in March. This time the IR discovered that my right stent is also occluded. I think this must be a new record. The odd thing is that much of the symptom improvement I noticed last September after my fir...

I have my consultation tomorrow with Dr Suresh Vedantham here in St Louis at the Washington University School of Medicine. I will let you all know if he has anything more hopeful to say except for open neck surgery. He is considered a top-notch IR so I have my fingers crossed. It seems to me like th...