This Is MS Multiple Sclerosis Community: Knowledge & Support

Although it's in keeping with what they've said we've recently heard from cheerleader about her husband's experience and magoo about her personal experience and it should also be noted that they've both been re-treated. It's not within my authority or intent to try to pose that as a damning statement towards the future of ccsvi treatment but it should be noted that even those oft raised examples do nothing to dispel suspicions that eventually every person treated will experience re-stenosis.

Hey folks, been a while...needed a break from everything.

I think what Cheer is saying is not to be discounted or taken lightly. Unfortunately, Courtney has not had any lasting improvements from her procedure in Brooklyn, and in the last couple of weeks seems to have progressed more.

We had one of the best Dr's out there treat her CCSVI; however, because we have no local follow up options with Drs who are taking the currently accepted testing methodologies seriously we are in a state of limbo unless we can find the money to travel out of state everytime we need a followup. I believe she restenosed shortly after her procedure but without good local follow-up and testing we're right back where we were to start with, and we've spent a lot of money in the process.

We have had local followup with well respected IRs since her treatment in May, she's had two ultrasounds and the Dr says her veins are fine. Neither follow-up was done with a true protocol, and because the doctor is skeptical they aren't going to invest their dollars getting staff trained to test and treat something that he says is still up in the air. This is a sentiment we've run into many times.

If you have the means to make multiple out of state trips, can pay out of pocket for multiple treatments by all means push forward, but if you're struggling financially you may want to be more cautious.

We're planning on moving in the next 1-2 years, and will be making our top criteria a location with good CCSVI treatment and care options.

Best of Luck to you all,
John and Courtney

We're planning on moving in the next 1-2 years, and will be making our top criteria a location with good CCSVI treatment and care options.

Dr. Fabrizio Salvi- Head neurologist at the University of Bologna spoke of his clinical observations as a neuruologist working with the CCSVI paradigm for three years. He told us that in 500MS patients he has tested now, 100% have CCSVI. He stated the doppler is a wonderful tool of diagnosis and their needs to be training in the technique. He has a hypothesis as to why there are different varieties of screening in high risk subjects- because prognosis is related to the type of malformation. He wants to answer the question if the Liberation procedure is a disease modifying treatment in MS. He will give proof tomorrow that there is plasticity and remyelination in the CNS and the Liberation procedure have proven to activate remyelination in the CNS as shown by MRI.

“Yes!!!” stated Dr. Salvi...”no one is lost!!” (editorial comment....his face lit up as he spoke these words.)