Hi, my name is Joan, and I just had the Liberation Treatment for MS. Yes, I use the word Liberation, even though when I first heard the term, I thought it sounded strange, hokey and too weird a word to use for a medical procedure. Frankly, when I first went to the CCSVI in MS sites on Facebook, the whole community there seemed kind of....well...weird. Then I researched it; in fact, I spent months researching it. It was so unusual, and yet, when I watched before and after videos of people who had the procedure, I was mesmerized. One day, I worked up enough nerve to ask a question on the site, and was befriended by Sandra Forbes, who along with Denise Manley counseled me and gave me tips on what to look for. Searching for an interventional radiologist was not easy; they are pretty few and far between in my state of Wisconsin. They are cutting edge on stem cell therapy, but I really wanted this instead.
After dozens of calls, I found a local IR who was willing to talk to me about it. He spent a lot of time looking at my MRI from the neurologist, and he told me that he understood that my case of MS was very aggressive. He also said he read information on this procedure, and he would be willing to test me. He spent two hours doing the ultra sound, all the while writing “protocols” which he had previously told me he knew all about. The first fifteen minutes, I was very unsure that he knew what he was looking at. Anyhow, after the two hours, he told me that he didn’t see anything out of the ordinary, and did I want to still do an MRV? Of course, I wanted it, so I went through that test as well. When I went back to his office to talk about the results, he said that there was nothing wrong with my jugular veins and that if I wanted him to do a venogram, he would only do the azygous, and go through the neck to get to it. I thanked him and told him I would get back to him.
Well, it didn’t take me long to email him, thanking him for his time, but I wasn’t sure that he had used proper protocols and I wanted venogram on all three veins, AND I was very concerned about him going in through my neck! He emailed back telling me to “go to Zamboni!”
After that, I decided to try to get someone to do the procedure that actually had done it before! It took me quite a while, but I found a place in Chicago, got a date set up and had it all fall through a week before I was scheduled; my insurance no longer covered anything performed at the place I had chosen! Needless to say, I was devastated. For months, I simply gave up on trying to go forward with treatment for CCSVI.
One night, I was on yet another MS site on Facebook, and I hooked up with a gal from Michigan named Carla. She gave me the name of yet another doctor in Chicago, and also gave me her phone number. I called her, and we spoke at length about Dr. Ferral, and her experience having angioplasty in Chicago. I decided to pursue it, but I didn’t have much hope. I filled out all the paperwork for the Rush University Medical Center Radiology department, and I was contacted right away. They told me that I would be called when they knew my insurance was taken care of. Well, after three weeks went by, I called back and asked what was taking so long. They got back to me and told me that my insurance would cover it, but the doctor that they assigned to do the surgery was not Dr. Ferral, but someone who I had never heard of! I was confused as to what to do, so I asked if I could have Dr. Ferral do the procedure, and they told me that Dr. Ferral was leaving the hospital! Now I had a place that my insurance would cover, but an unfamiliar doctor. I talked to Carla, who helped me by giving me Dr. Ferral’s email address. I wrote to him, telling him that he didn’t know me, but I really wanted him to do my procedure. Believe it or not, he was VERY receptive, telling me that he would love to treat me before leaving Rush hospital, and could I come the following week, and he would fit me in? Now, it was so exciting! My husband and I madly planned travel, cancelled commitments and were on the road to Chicago two days later! In hindsight, it was fortunate that I didn’t really have a lot of time to think about it; I was a worried mess as it was!
Thursday, I went to the office and got to talk to Maggie, who was PA of Dr. Ferral’s. Talking to her was amazing! She talked about Dr. Ferral’s experience, and used all the right terms I had been reading about for the past year. She was very reassuring too, telling me that of the 103 people with MS that Dr. Ferral treated, 98 had CCSVI. She also told me he used IVUS. We did a very fast ultra sound, I gave her my CD of all the tests I had taken at home, and I was scheduled to have the procedure done the next day! We rushed through blood work, picked up blood thinners and went back to the hotel. Not only did I get a good night’s sleep, but I went back to bed while my husband left to do some work for his company. When I got up, I signed on to Facebook and talked a bit to Sandra Forbes, who brought me full circle of where I started. She calmed me down, and told me that I would do fine. I signed off, read a little, and got ready!
My fears were two: one, that I didn’t have anything wrong with my veins, and two that I had yet to meet with Dr. Ferral. Well, he came after I was prepped, and immediately told me that he had read my tests from home and that it looked like my right jugulas had stenosis. When I heard him say that, I was so relieved! The procedure was amazing! I got to stay awake and see everything on the screen. First they looked at the left jugular vein and it was stenosed. They ballooned it and it opened the first try. The pain was not terrible, but I could feel discomfort in my teeth and even in my shoulder while they ballooned it. Next, they looked at the RJV, and it was also blocked. This time it took two tries, two different balloons, but again, they got it open, and so both were flowing good without stents. Lastly, they looked at my azygous vein, and it had a strange kink in it and a displaced valve, but again, they ballooned it right open. In less than two hours, everything was finished. It was early evening and I was in a dimly lit recovery room.
The two hours in recovery passed slowly, but I understood that it was necessary to lay still and rest. As soon as I got up, I could tell that my walking was better, but it was not until we got into the car to go back to the hotel that I realized how clear my vision was! Night driving was something I could handle, but everything looked so clear with no strange lights flashing or blurry circles around lights or seeing things that weren’t there. I was amazed!
Back at the hotel, I discovered that I could lift my leg without falling over! I could touch the tip of my nose and hit it on the first try! I was like a kid in a candy store! But I was tired, and likely still a little woozy. I slept, but woke up the next morning, wanting to get up and see what Santa had left me. During the next two days, we had to spend the weekend in Chicago where we would be close if I needed care. The very first day, we went to a mall for two hours, where I shopped without a cart to hang on to! We walked everywhere, and my foot did not drop at all. Colors were so vivid and clear! I did not have fatigue. The next day was even better! We shopped more, and I could carry packages, and again, good balance, no fatigue! YAY.
The next day was my follow up exam with Dr. Ferral. He showed my husband, Steve and me the pictures of my veins and how he had cleared them. I thanked him and he told me to stay in touch. What do you say to someone who has made your quality of life so much better? The guy is a rock star!
Now, it has been just over a week, and people here at home are thrilled at my obvious improvements. So far, I still have a lot of numbness, but I went in knowing that there were over 100 lesions in my brain alone. This journey has had a lot of twists and turns in it, and it was a long one. But I truly was Liberated from so many of the things that bothered me most about my MS, I would never want to call what I experienced anything but Liberation!
Just one more note: I believe in the power of prayer and that God guided me to where I had to be to get this done exactly the way that was best for me. So many people prayed for me, and if you were one of them, thank you! Please continue to pray for me and ask God to keep my veins flowing!