DeniseW wrote:Hello Everyone,
My 21 year old son was liberated April 28th at Georgetown Hospital. He has had MS for a year and a half. He had one relapse about 6 months after he was diagnosed. On Tysabri for 8 months as Avonex didn't protect him from the relapse.
Post Liberation...He is doing great!! His eye sight is better, his fatigue is gone, the tremor he had in his hand is gone, the brain fog has lifted, he isn't dragging his foot anymore, better balance...it's all good!! Praying that the veins remain open (without stents). We are looking at it as he has a 50% chance they will.
He had a total of 6 angioplasties during his 3+ hour liberation. Both jugulars were blocked...one majorly and the other not as bad. His azyogus vein was basically completely blocked. Took 3 angios to open it. Dr. N said it was the worst he ever saw.
Notes about testing for CCSVI...the first doppler he had at Washington Hospital Center showed a lot of blockage. The doppler done at Georgetown Hospital didn't show much of a blockage. If it wasn't for the one done at WHC he may not have been selected for the study.
Had an MRV done at WHC that didn't show significant blockage. In retrospect...we would suggest that MRV's aren't the way to go, and you should have your dopplers done at WHC if possible, until G.town techs get better at it.
Dr. Tornatore and Dr. Neville are fabulous doctors!! The staff at Georgetown Hospital couldn't have been better. We would highly recommend them!!
Thanks so much for posting this... what wonderful progress... and heartwarming.. esp. coming from a parents perspective.
Your son's case would be so interesting to follow clinically.. If the researchers and nay-saying neuros would just take more interest instead of trying to dismiss/refute this, we could all benefit..
To me your sons case would be most valuable to study/track over the next ten years..
Lets hope and pray the stenosis does not re-appear and any lesions repair / immune response stops forever.. That to me is a CURE... but way to early I suppose..
I think we all should have a chance at treatment first and now... study us afterwards..