I went to Stanford in October of 2009 and made the best decision for myself, and that was to be tested and treated for CCSVI. I believed that it could not be good for my body if I had restricted blood flow. And, my body has given me every indication that I was right.
I was treated and had amazing results. I have been following the science and contributing in small ways, because when your body has betrayed you and you find a way to gain some improvement, it is amazing. I am not claiming CCSVI is "THE" answer because I believe the scientific studies need to be completed and with time we will all understand the vascular connection to MS. It is a piece, if not the whole pie!
The fact is it helped me, but I started to lose some of my gains in the second year. I had a return of terrible headaches and right-sided pain, and with the change of seasons this year, I felt the heat intolerance returning. So, I decided to get evaluated again.
When I was initially treated we were very early in this discovery and Dr. Dake was the first and only physician looking into CCSVI in the US. I will forever be grateful for his care over the past year and a half. He is a remarkable doctor and human being. Every email question I had for the past 18 months, was answered 99% of the time, within minutes. We discussed everything and he was professional and caring. That is quite a combination. Obviously, when he fixed my severe bi-lateral jugular stenosis, my body changed. The fatigue and cog-fog lifted, and I felt strong. I have a family who watched my transformation with delight. He was supportive when I chose to evaluate my condition again, this time closer to home, with Dr. McGuckin at the Vascular Access Center.
I was amazed to find out I had quite a bit of work left to do on my veins. I had May Thurners (80% blockage), I had a 70% left renal vein blockage, I had a web and a faulty valve in my azygous which created a 70% blockage, and both of my jugulars had additional stenoses, (30% left and 40% right). All were treated with angioplasty. My stents which are in my upper jugulars were widely patent and McGuckin stated they were the best he's seen.
So, now I am left to wonder about my prior recovery when I still had so many blockages. I believe my body obviously responded well to the additional blood flow from the first treatment, but was unable to compensate for the other blockages for very long. In fact, when I was on the table with McGuckin, my pain and headaches were triggered at points during the procedure, which I shared with the good doc. Then, as quickly as they intensified, they were relieved. Dr. McGuckin spoke of this after, noting that I had no idea when he was ballooning the blockages, but that is when I complained of the pain. And, when the blockages were cleared, he stated that I told him the pain was gone. I am amazed, but not surprised, that the blockages were causing the exact pain I had been complaining about.
So, how am I now? It may be too early to tell, but I have some improvement. First, I had the most amazing dreams the first night. (I had similar dreams after my first procedure) The world looks crisper and colors are definitely brighter. (I did not have this the first time) I believe the right-sided pain and horrible headaches have lessened too, but I want to wait a while to be sure.
I've been resting and hydrating since treatment. I believe most of us will need ongoing treatment to keep our veins open. I have no problem with that because I know it makes a difference to my health. I have two wonderful doctors and I know that if I need additional help, I can get it.
I wanted to share my story and I hope it will help someone.
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.