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Living the Experience

Here we feature CCSVI diagnosis and treatment experiences from the perspective of the patient, and also from a first-hand observer such as a close friend or family member. Not all CCSVI treatment stories result in (immediate) success for patients, and we share those accounts as well.

We encourage anyone considering CCSVI treatment to review all sections of our website, including "Treatment and Efficacy" and "Treatment Risks," which includes links to the FDA's Safety Communication on CCSVI Treatment.

 

Angelo's Patient Perspective
Angelo's Companion Perspective: Jim

Angelo-MS Celebrity Golf

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 


Angelo's Patient Perspective

I was diagnosed with MS in 1993, and over the past twelve years have had moderate to severe dizziness/brain fog, poor balance, moderate to extreme fatigue, and declining strength in my arms and legs. I tried Avonex, Copaxone, and Rebif between 1995 and 2003 with little to no success. I was declining quite a bit by 2003, and questioning whether I could continue working full time or even drive safely again. My daughters were three and six years old at the time, so I really wanted to try and improve my quality of life. I had an EDSS Score of 6.5 and was heading toward a wheelchair. I tried an experimental/trial drug called Zenapax, and it helped my balance and weakness significantly. I could work full time, drive a car, and even golf a little. The drug was not approved (nor has it been approved to date), so I switched to Tysabri, which kept me relatively stable for three years. When I left the Zenapax study, my EDSS Score had improved to a 3.0.

Soon after Dr. Zamboni published his research in 2009, I began following and exploring CCSVI. In 2012, I began declining considerably again. My dizziness/brain fog, balance and fatigue were becoming intolerable. I was not ready for my quality of life to degrade again (my daughters were now 14 and 12), so I began seriously seeking CCSVI treatment. I considered going to India or Costa Rica for treatment. Then I found a place in Salt Lake City that was performing CCSVI evaluations/procedures, so I had an initial Doppler reading on May 9, 2012. I scheduled a further CCSVI evaluation/treatment on May 29. On May 10, the FDA issued a "Safety Communication" warning to those with MS and all physicians and clinical investigators performing CCSVI. The Salt Lake City facility decided to suspend their CCSVI efforts. So, it was back to the drawing board for me.

My Utah doctor referred me to a colleague of his who was still performing the CCSVI evaluation and procedure. I traveled to Rhode Island and was treated on October 11, 2012. During the procedure I was given a local anesthesia, my legs and arms were strapped down, and then my veins were entered through my right groin area. I was totally awake and alert through the entire CCSVI procedure (very cool, and a bit freaky). The doctor found reflux using venography and performed left internal jugular venoplasty and Azygous venoplasty, giving me a detailed play-by-play description as he entered my veins (left internal jugular first) regarding what I was about to feel. I felt some mild pressure in my upper left chest area for a second or two, and then sort of a tickle/mild pressure on my left ear. Upon the balloon clearing my left side, I felt something change in my head. I then moved my head to the left and then looked up and there was a definite slight decrease in my dizziness/brain fog.

I left the hospital and had lunch at the mall with my sisters. I was walking with my cane, but clearly had a mild improvement in my dizziness. I looked up for a few seconds at a three story mall, and wasn't dizzy instantly like pre-CCSVI, but I could not look up for too long before dizziness/brain fog kicked in. I felt pretty good all afternoon (bed rest) and evening. Four days later I returned to work and daily life. Nothing changed, so I settled in on moving forward with the very minor improvement in my dizziness/brain fog that was only noticeable to me.

On the evening of October 23, I began to notice dramatic improvements. I worked and afterward went to my daughter's soccer game. It ended around 7pm and as I walked to my car I vaguely noticed I had a little more energy than usual. I went home, had dinner by myself, and was just relaxing watching TV until around 9pm. I walked into the kitchen to make some tea, and noticed I cruised into the kitchen and came back remarkably quickly (cane-free). I then started talking to myself, wondering what just happened, so I did it again, and HOLY COW, my balance, dizziness, and brain fog had suddenly IMPROVED DRAMATICALLY (on a scale of 1-100, I used to feel like a 1-20 all day long, now suddenly I feel like an 125). I then proceeded to run myself through the series of balance, coordination, and dexterity tests used for the EDSS score. I was doing all of them better than I had in 12 years. MY GUESS IS MY EDSS SCORE WOULD BE AROUND A 2.0. I grabbed a basketball and started dribbling around in my kitchen with both hands, switching back and forth somewhat. I could actually dribble a bit again (not great, but OK).

The next morning I woke up and it was real. I ran myself through the series of tests again, and I could do them all. I grabbed my basketball, and I could dribble. I then proceeded to call all my family and friends and let them know the GREAT NEWS. My kids were at their mom's, so I couldn't tell them. They had their championship soccer game that night and won. I walked to the field and watched their game without my cane, for the first time ever in their lives.

The next day my girls came over after school, and I told them what happened and showed them a few of things I could now do; things that they had never seen. I told them, "I can jump and touch the ceiling." They thought I was crazy, and I would fall down and hurt myself, but after some more demonstrations of my newfound balance, they agreed to let me try. I jumped up, touched the ceiling, and did not fall down. However, the jump made me dizzy for the remainder of the evening. The following morning I was fully recovered from my jump and was giddy with excitement. I hardly used my cane at work (only needed it for fatigue, not balance). I had people push me to show them I was stable and in balance. On November 8th, a month after my CCSVI procedure, I had the best morning of walking cane-free that I can remember. I walked around the office for two hours or so, like a normal/healthy person, cane-free.

Here are a few of the things I am now able to do which have significantly enhanced the quality of my life. I can:

  • shovel snow;
  • catch a football;
  • dribble a basketball;
  • cross a five lane road cane-free;
  • carry a hot plate of food in one hand and a hot drink in the other hand comfortably;
  • walk down a long flight of stairs cane-free; and
  • walk out to the ocean, through the sand.

I am the healthiest I have been since 1998; I have gained ½ hour to 2 hours a day back in my life, because I don't need to rest/sleep nearly as much as before because I am not dizzy all day.

In closing, I want to thank Dr. Zamboni and his wife, and the other CCSVI leaders around the world. CCSVI treatment has improved my quality of life, dramatically, allowing me to participate in my girls' lives like never before. I have tried most of the MS drugs and have experienced some success with those neurological disease medications, but nothing like the improvements I currently have received from the CCSVI treatment. I am committed to working with CCSVI.org to help. Also, I am committed to help bring the neurological medical world together with the vascular medical world and any other medical world necessary to really solve/cure these diseases.

dividerswoosh

Angelo's Companion Perspective: Jim

I remember the shock of the day in 1993 when Angelo got his diagnosis. What did it mean? Were bad things going to happen? Was there any hope?

We have always played sports together – basketball, football, golf, tennis, softball – lots of sports. Over the years I watched his symptoms slowly progress - one sport at a time; first the running sports, tennis and basketball, and finally, two summers ago, we played our last round of golf together. As the sports went, the use of a cane became an everyday occurrence, even to the point where he would use it around the house. Some of the drugs had helped, but they didn't stop it. They only slowed it down.

I wasn't with Angelo for his CCSVI treatment, but I talked to him before the procedure and hours after. After, on the phone, I couldn't really tell much, except that he thought he was feeling better and he was upbeat. But when I picked him up at the airport, even in the dim light, I could see a change. His color was back. He wasn't pasty - he had natural tones. Even more noticeable was the way he moved his head. Because of dizziness, he had always carried himself like he had a stiff neck. He would often remind me that he couldn't look "up and to the left" because he would get so dizzy that he would fall down. However on the way home, he was very animated and moving his head back and forth – and his energy was much better than it usually was for being late at night. CCSVI treatment had definitely changed him.

Getting his balance back has been the most exciting thing for Angelo and he has shared his excitement with me along the way. He has sent me several texts with status updates. My favorite one read:

"I just tripped over a bag in my kitchen carrying a full bowl of hot stew. I hit the floor, catching myself with my left hand / wrist / knees. I did not spill a drop of hot stew! I got up, barely dizzy, stew bowl in hand, with no injury. It was awesome!"

I never really appreciated that falling down could be so awesome, but I guess when you have been doing it without balance, in a flailing heap, it is exciting.

Over the last several weeks, I have seen significant improvements – especially with his balance, energy and mental clarity. He has gone from using his cane almost all the time and needing a nap every afternoon, to having greatly improved mobility and normal, healthy energy. Last weekend we went to San Diego and he walked with his kids, without a cane, almost everywhere we went - the beach, the amusement park, the Bengals game -- long, full, active days. He still brought his cane with him, but he walked mostly without it. A huge improvement! At one point during dinner, after we had moved tables from the bar area to the dining area, our bar server came and found us. We had left something. She handed me the cane and said, "Sir, you left your cane." I just started smiling as the significance of what had just transpired sank in.

I am really thankful that Dr. Zamboni had the medical curiosity to explore and figure out that some MS symptoms are caused by venous insufficiency. CCSVI is real, and people like Angelo are testimony to fact that healthy blood flow to the brain and nervous system is paramount to good neurologic health. CCSVI is one of the most exciting medical frontiers and I look forward to the day when an MRV or CCSVI Ultrasound is the first test ordered when people show up expressing symptoms of MS. To the lay person, it seems obvious that poor circulation to parts of the brain could cause dizziness and who knows what else. There is nothing controversial about someone with blocked veins getting them unblocked and getting relief from symptoms. The research is progressing slowly, but with the everyday successes like Angelo's, I hope we are one step closer to the day when the brilliant Neurologists join force with the IR doctors, to accelerate the research for the good of the patients.

But while I wait, I think I will enjoy a nice round of golf with my friend Angelo!

dividerswoosh

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