I had the procedure done at Stanford by Dr. Dake a year ago on October 19, 2009. I had numerous issues, especially cognitive deficiencies, fatigue and constant pain and stiffness. I had severe stenosis of both jugulars from my ear to my jaw. I had two stents and although my immediate recovery period was rough, within a week I had significant improvements. I really did benefit in almost all areas and began a new life.
I have learned a few things over the past year about my body. I have learned that I retain some stiffness in my legs. I am sure this is due to permanent damage, which of course won't be repaired by opening my veins. I can certainly live with this since I now have had enough time to realize it is not getting worse.
I also have learned that any kind of inflammation or activation of my immune system triggers my old symptoms. This caused me great concern in the beginning, but over the year having gone through it a few times, I know it is only temporary. I always regain everything once the inflammation is gone. The weakened areas of damage in my brain and the over active immune response can still somehow get to those areas. I feel very comfortable now that this is the way it is and I don't worry. None of this is "new", it is all "old" damage just being stimulated.
Dr. Dake is the most wonderful and intelligent doctor. He has been there for all of us who were treated by him. He continues to fight for us everyday. He is a very important piece of this discovery. His work will help to start figuring out this very complex issue. I have never doubted his expertise or his guidance. I am so happy to have had stents to correct my stenosis because I don't have the concern of restenosis. The follow up care and blood thinning therapy he prescribed has prevented many of the scary things I see happening with stents now.
As for my stents...they are great! As for my MRI...it is stable! I haven't taken Copaxone since before my treatment and the last time I took a break from it I had 4 new lesions within 8 months. This is victory for me!!!
I met two wonderful ladies who were treated around the same time as I was while in Palo Alto. The energy and excitement around that table was quite amazing. We have all had a life changing experience. We all do not fear MS any longer. We are the reason this treatment has moved forward. Our stories are so amazing, our lives are so improved, and the energy we have now is explosive! It's quite remarkable. MS has never been something you can stop or recover from... until now. There are no words to describe how grateful we are.
So my experiment with CCSVI has passed the 1 year mark and I feel very lucky and happy with the outcome. I feel I may have stopped this MonSter in it's tracks and I hope it continues for my lifetime. If not, I can't tell you all how grateful I am for the past year. It feels good to be a mom again, a wife again, and myself again.
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.