Yesterday was my one year angioversary as they are becoming known around the globe. It was one year ago, on August 19th, 2010, that I had my first CCSVI procedure in Tampa, FL. And wow, what a difference a year makes!
I clearly remember spending months and months researching everything about Chronic Cerebrospinal Venous Insufficiency (CCSVI) beginning in late 2009 and into the spring of 2010, that I could get my hands on. I was on the computer 24/7. I was making new friends on Facebook and watching tons of Youtube videos, miraculously showing MS patients walking without assistance and even jumping!
I was learning more each day about Dr. Paulo Zamboni, (the brilliant doctor who discovered CCSVI) and Dr. Mike Dake (the first doc in the U.S. to perform the CCSVI angioplasty) and heard names like Jeff and Joan Beal (Jeff was the first patient to have the CCSVI in the U.S. and his unbelievably sharp wife Joan, who brought Dr. Zamboni's research to Dr. Dake and also started the CCSVI in MS Facebook page), Dr. David Hubbard (one of the first neuros to get onboard with CCSVI )Michelle Brown (founder of the CCSVI Alliance), Sharon Richardson, (President of the CCSVI Alliance and third person to have the procedure done by Mike Dake) and Denise Manley (CCSVI advocate extraordinaire) were rolling off my tongue. I was amazed and thankful for their openness and willingness to share their experiences with total strangers. Without them and the many other CCSVI pioneers, none of any thing I was learning would have been possible.
I began tapping into every resource I could to learn more about MS and CCSVI. I logged into the National MS Society and found their disappointing view of this new discovery for MS. I was so disappointed in them, having been a long time fundraiser and supporter of the NMSS, but I wasn't letting their warnings deter my enthusasium for this new course I was setting.
I was quickly becoming part of a new club that I never in my wildest imagination believed I would be in. These MS'ers actually had HOPE. They weren't just getting through the days the best way they knew how. They weren't focused on the latest wheelchair models or newest walker or cane on the market. They were looking to get rid of those things. They were sick and tired of being sick and tired. They had purpose and were excited to wake up every morning. They were banding together to help each other and to spread the news about CCSVI. WOW - I couldn't believe I was fortunate enough to have found out about CCSVI and found these new friends. TOTALLY a God - Thing.
My anticipation was building as I pondered the possibilities that lie before me. I was on a roller coaster ride trying to find someone in my area that might be actually doing this. Door were shut, and then, with God's perfect timing, doors were opened. Everyday when my husband came home from work, I greeted him with the news of the day about what I had found out. We were both getting excited and nervous about the prospect of me actually getting better, after living with MS for over 20 years. It was an unthinkable thought in many ways. I had been going downhill for so long. The thought of actually reversing that and going the other way was daunting to say the least. Yet, my husband knew that once I got my mind set on something, there is no stopping me, so even though he urged me to proceed with caution, he knew I was a freight train and freight trains are very hard to stop!
When everything came together and we actually sat before this new doctor, our Interventional Radiologist, Dr. Bulent Arslan, I felt hope and excitement coming from him too. It wa s pretty amazing. Hope from a doctor? Unheard of in most of the neurological community treating MS. Yet, this wonderful and caring man, who I have grown to love over the last year, was the single most compassionate doctor I had ever encountered. He teared up when he described his very first CCSVI patient only a month ago, who went from a wheelchair to walking after the procedure. He told me he was having a hard time believing it himself. He had only done two procedures at that point, and he was honest in telling me that angioplasty was not new to him, but this CCSVI procedure was new to him and he didn't know what my results would be. But, if I was up for it, he was up for it. I immediately felt at ease and confident in his abilities. I said let's go, and he agreed. We waited until after his vacation and proceeded on August 20th, 2010 with some pretty dramatic improvements. My CCSVI miracle had actually occured. God was faithful. I felt better than I had in many years and it was awesome!
Me with Dr. Arslan and Barbara Garcia, (his first patient) at the
CCSVI Walk-n-Roll Educational Event and Inaugural Walk in Tampa 3/5
Fast forward one year. CCSVI, Dr. Zamboni, the brilliant doctor who discovered it, and Dr. Arslan (Dr. A. as I call him) have changed my life forever!
Am I cured of my MS? No, unfortunately not, because I had years or damage that had been done that can not be reversed - not yet anyway. Has my quality of life improved? Yes, dramatically and that is what angioplasty can do for anyone who has CCSVI along with their MS. We are still in the baby years, learning about the connection of MS and CCSVI but we've come a REAL long way in this last year, baby. :)
So, how exactly, has my life changed? My debilitating head pain, that plaqued me since my actual diagnosis in 1998, is pretty much gone. My fatigue is dramatically lessened. I can actually go somewhere and do something without having to come back and lay down after 2-3 hours. Just those two things have made a huge difference in my life. But there's more. My balance is better, I can stand longer, and my cognitive abilities are much better. My bladder function is improved. My strength is better. I can stand up in the shower and wash my hair. I can sweep the floor. I can stand in the kitchen and cook dinner in 10 minute segments. I couldn't do any of that at all before CCSVI
I'm still having trouble walking and I still have numbness all over my body, but I can live with that and have been living with that since my dx. I still have MS and I still have bad days, but the bad days are few and far between, instead of commonplace like they used to be.
I had my second CCSVI procedure on May 20th of this year and have to admit that my results were not as remarkable as after the first one, but then again I wasn't nearly as bad going into this one as I was that first one a year ago.
CCSVI is NOT a cure for MS. But, it is a highly effective new treatment that is helping thousands of patients suffering with this debilitating disease improve their life. It is giving them HOPE for the first time in many years.
I am blessed to have had the CCSVI procedure, twice. It is without a doubt, the BEST thing I have ever done to manage my MS symptoms. I am forever grateful to the pioneering patients and doctors who came before me. Without them, I would have never found out about this, or been able to have the confidence to move forward in pursuing this.
After working with the CCSVI Alliance since last year and helping raise funds to educate others about CCSVI, I was asked to be on the patient advisory board and immediately accepted with pride.
I now spend much of my time helping to educate others about CCSVI so they, too, might be able to live a better and more normal life. I believe that this is my new God given role for my remaining days. To pay it forward as they say, to share what I have learned to help someone else in their daily struggle. I am blessed and I want the next person to be blessed too! I believe with all my heart that is what God wants me to do.
My verse for today
"Do not neglect to do good and to share what you have, for such sacrifices are pleasing to God."
My prayer for today:
Thank you Lord Jesus for Dr. Paulo Zamboni. Thank you Lord Jesus for Dr. Mike Dake, Dr. David Hubbard and Dr. Bulent Arslan and all the other physicians and MS patients who helped me and continue to help others in learning about CCSVI. Continue to guide them in their quest for knowledge about the connection between MS and CCSVI so that they may help to end the suffering that this MS disease causes on so many. Help the healing continue for those being treated and anticipating being treated. Thank you for all the people, who so selflessly give of themselves everyday to help improve the lives of others
In Jesus Name I pray