I thought I was the luckiest girl in the world. I had given up the rat race in 1999; chucked my corporate job as Director of Human Resources for a Manhattan advertising firm, and at age 50 went to live on the small island of Vieques, Puerto Rico (population 8,000). I managed a beautiful nine room guesthouse on a hilltop overlooking the Caribbean on one side and the Atlantic on the other. I had great friends and neighbors, had learned to speak Spanish, was on the board of the local Humane Society, and was very happy. Life was wonderful, and I was old enough to appreciate it.
I woke up one morning in 2004 feeling like both feet had fallen asleep – tingling and slightly numb. “Strange,” I thought, and went off to work. Over the next 2 weeks, however, that feeling crept up my body until it reached my upper chest. Then I noticed when I put my head forward the tingling got worse, like an electric shock. The local chiropractor suggested I see a neurologist, so I took the ferry to see one in Fajardo, on the main island. She did some testing but made no diagnosis. The thought of MS came to my mind because I had an aunt and a cousin with MS, but this doctor told me I was too old to get MS (I was 55). I didn't know it then, but clearly that was false. Then, a childhood friend who had MS for 20 years happened to call me. When I described my symptoms she said, “Andi, I hate to tell you this, but that's exactly how my symptoms started.” I knew then that I had to return to the States to get a proper diagnosis and treatment.
By August, 2004 I was in Florida and had landed a job. I was diagnosed with RRMS early in 2005. My legs felt very heavy and seemed to have stopped working. I kept falling and breaking bones. I started using a cane, then a walker, and finally I needed an electric scooter to be able to continue to work. The fatigue was overwhelming, and heat sensitivity (not a good thing when you live in south Florida), made me dread going outside. I started to have bladder problems. In June of 2009 I took two weeks off from work to stay home and rest. I spent a lot of time on Facebook and other MS forums where I learned of Dr. Zamboni's research. I was so excited- finally, a theory of MS that made sense to me!
I networked, asked a ton of questions, and watched countless before and after videos. The names Zamboni, Salvi, Siskin, Hubbard, Haacke, Dake, and Sclafani rolled easily off my tongue. By August 2010 I worked up the courage to ask my neurologist if he could order an MRV of the jugular veins. By this time I had progressed to SPMS, and my treatment options were pretty much exhausted. My doctor knew about CCSVI and was open to it, but he felt more study was needed. Well, yes, we all agree on that, but my MS wasn’t waiting for studies – it was marching along quite happily causing me pain and fatigue and more disability. I couldn't wait. Lo and behold, the MRV showed narrowing in both jugulars. But what could I do with that information?
I spoke to my family and then made a decision. I would finally take control of my own disease. It was not a cure, but a treatment that might let me enjoy a better quality of life. It was expensive – my HMO insurance would not cover me. I was realistic and not expecting miracles, but I had run out of choices and was running out of time. Every day was a struggle, and while I'm a pretty strong person and a fighter, I'm telling you that I was exhausted! I tried to stay positive, but that takes energy and my tank was running on empty. Now I just needed to find a doctor to do the procedure.
Buffalo was filled, and I was too old anyway. I knew people had gone to Europe and India. Clinics were opening up in Mexico and Costa Rica. But I just couldn't make the leap to travel that far for the possibility of getting better. I got on a waiting list in Albany, but the wait was almost a year. I heard about the Hubbard Foundation in California and was ready to go; just waiting to confirm the date, when I happened to read a forum post and watched a video on YouTube from a woman who had the CCSVI procedure performed in Tampa, Florida. Yes, Tampa- four hours away from my home! I contacted her and then Googled the name of her doctor to read up on his credentials (which were pretty impressive). I fired off an email to him at 10:30 PM on a Friday night. At 11:00 PM I got a reply! Wow, could it be a sign? I took the leap- sent him my MRV and made an appointment for Doppler testing. On October 6th my son and I were in Tampa, prepared to meet this remarkable doctor who answered his own emails late at night.
The moment I met Dr. Bulent Arslan, I knew I was in the right place at the right time, with the right doctor. I cannot say enough about this man who has really gone so far above and beyond what most doctors would do for their patients. He answered all our questions and put me at ease. It was clear he understood CCSVI and had been exchanging information with other doctors who had been doing the procedure. I was excited and nervous and hopeful, and on October 7, 2010 I had my veins opened with balloon angioplasty. Dr. Arlsan cleared three blockages of about 60% each in the right and left jugulars and the azygos.
Did I jump out of the bed and walk? No. But did I get improvements? Oh yes! They were not immediate, as with some patients, but over the last five months my fatigue is nearly gone. I sleep better. I have the energy to exercise which I had been unable to do before. With time and exercise I'm hopeful my balance and mobility will continue to improve. I rarely use my scooter now; my walker and cane suffice for most situations. I seem to tolerate the heat better too, which is a blessing. My concentration has improved, and I can focus without feeling 'foggy'. Some other symptoms, such as bladder problems, have not changed. My hands and feet still tingle and I think they always will, but overall I feel that this treatment was, for me, a success. If I need to repeat the procedure in the future, I will not hesitate to do it again.
The decision to have angioplasty is a very personal one, and I made the decision that was right for me. Along the way in my CCSVI journey I have met the most wonderful, kind, caring, and generous individuals. I've made friendships that will last, and I've found a new mission: to help and encourage others with MS, to educate them about CCSVI, and to support the research that is needed. I'm one of thousands who have been treated, and the list is growing every day. I firmly believe that with education and studies, treatment for CCSVI will be mainstream medicine and available to MS patients everywhere sooner than we think. That is my hope for everyone who suffers with this disease.
I met Andrea in 1999 when we both volunteered at the Vieques Humane Society. We were cleaning cages, walking dogs and helping with the spay/neuter program. Andrea lived in Vieques and had a regular job but I was only there for month specifically to volunteer. In the short time I was there we became fast friends and I enjoyed her spirit of fun, energy, and optimism. She was always doing something and seemed to be juggling a lot of projects effortlessly. I'm a high energy person too so we got along quite well. When my time on Vieques ended we knew we'd remain friends.
I would return to Vieques every year and often stayed at Andrea's home. When I was there in 2004 I found a very different woman. She was having trouble walking and told me she'd had one really bad fall. I was shocked to see her legs and arms with many bruises. Her happy and positive outlook was fading with the frustration of not knowing what was wrong. I agreed that her plan to move to Florida and seek treatment was a good one. Since I live in Florida I was glad she chose to move there since we'd be able to see a lot more of each other.
After her diagnosis I watched as her walking became more difficult and finally she had to use an electric scooter to get around. She couldn't do things outdoors because the heat would bother her and the worst thing was she had no energy. My friend the champion multi-tasker could now only handle one task a day. She stayed strong and positive but it was hard for her friends to know that she was struggling every day just to get up and get dressed.
Andrea was so excited when she found out about Dr. Zamboni's theory of CCSVI. Like many of her friends I was skeptical, and I worried that she'd spend a lot of money for something that offered false hope. But she assured her family and friends that she had done a year of research and was determined to find a doctor to test and treat her for CCSVI. She had the procedure in Tampa and stayed at my home in Naples on her way there. After her procedure we didn't have a chance to see each other until more than 3 months later. Andrea drove herself to Naples and there was no scooter in sight! She could walk well with a walker and sometimes with just a cane. The next morning I saw her briefly walking around my house with no assistance at all! But the best thing was that she had her old energy back. We had a wonderful visit and Andrea has a new mission in life: to spread the word about CCSVI and help others who want to be test and treated. My old friend is back!