Rhonda's Patient Perspective
Rhonda's Companion Perspective: Dan
Rhonda's Patient Persepctive
My diagnosis of MS was a complete shock. I never had any symptoms prior to my first attack. I was 35 years old. I was healthy. This first MS exacerbation was severe, and shortly after, a second attack confirmed my MS diagnosis. This was six years ago. I never had a complete remission from those first attacks. About three years into my battle with MS I was severely compromised by disabling fatigue, chronic pain, cognitive decline, stiffness, shaking, migraines, and a variety of other common MS symptoms. I was spending more and more time home and in bed. I was unable to participate in everyday activities with my family. I was unable to plan anything.
I had always questioned my doctors more than they liked. I was always seeking out anything new in MS research, much of which never panned out, and sometimes these new MS breakthroughs were just plain crazy. When I started reading the research on CCSVI I felt entirely convinced it was real. I was determined to follow it and find out if I suffered from venous obstruction. I felt that if my veins were blocked it could not be good for my body. If my veins were blocked I wanted them fixed and if this helped my MS, I felt that would be a bonus.
Everything happened very quickly for me. I was scheduled to see Dr. Dake within weeks of my inquiry. I flew to California, arrived at Stanford, and began my journey. On the first day, I had my MRI/MRV and had blood work done. I was acutely aware that I was not there for something routine. The tests were standard for me, but what they were looking for this time was so new. The scans were performed by a wonderful man named Russ, and he made me feel very comfortable. He told me about the people coming from all over the country to see Dr. Dake. I had my tests done on a Friday. I would not get my results until Monday morning at my scheduled consultation with Dr. Dake. It was a long weekend to say the least. “Would they find anything?” I wondered constantly until my consult with Dr. Dake.
Monday morning I met with Dr. Dake. I did indeed have stenosis. It was bi-lateral, severe, and was located at C-1 and C-2. We discussed the procedure, and I agreed to have it done later that day. Waiting to go into pre-op was nerve wracking. Once inside pre-op I was prepared for surgery and given all of the details. Then they wheeled me into the operating room. My anxiety was extremely high. I was placed on a thin table with a large machine overhead for imaging. To my left were several screens. Nurses and technicians milled around me preparing for the procedure. I was given mild sedation. I was awake as I felt the catheter go into my groin, it was uncomfortable. I watched my images on the screen as they worked the stent into the area. When the stent was opened and blood flow was restored, I had a pretty bad headache. They did the same on the other side and I was taken to recovery soon after. My headache continued to be severe. I was given a morphine pump and was encouraged to use it frequently because of the pain. Unfortunately, I ended up having a bad reaction to the morphine and soon began vomiting. That first night I stayed in the hospital. I was monitored, and because of the pain and nausea, I didn’t get much sleep. The next day I was discharged, and to tell the truth, I was questioning what I had just done. I didn’t feel well.
While recovering over the next several days the nausea and headaches began to subside. When I flew home five days after surgery, I felt good. I had been feeling relief from the constant neck, head and shoulder pain I had lived with for the past six years. I was feeling more awake and the world around me was more vivid. I was able to think more clearly. I was dreaming and these dreams were unlike any I had ever had. They were stunning in detail and color. The stiffness in my hands and legs was gone. I felt relief from urinary urgency and from heat sensitivity.
I was thrilled at this point with my results. The fear of what I had done was replaced with wonder and excitement at my progress. I no longer had numbness. I no longer would tremble. I had normal balance. I felt stronger. One of the best parts of my recovery was the returned mental clarity. I was thinking quickly, I was speaking more fluidly, and my brain was no longer in a fog. I began testing myself at games and trivia. I was able to find answers. I was indeed better.
The stent on my left side did create some nerve impingement. This caused headaches initially and prevented me from lifting my arm easily. This nerve needs to repair itself. Four months after surgery my shoulder and the nerve were completely healed.
I never imagined feeling like I did before I had MS, but I do. Most of my improvements have continued to get even better. I can’t imagine a better outcome. Do I feel lucky? YES! I am a much better mother and wife, friend and daughter. I feel like I can contribute to the world again. I feel like I have been given a miracle and I am aware of it every day.
Rhonda's Companion Perspective: Dan
When my wife, Rhonda, was diagnosed with MS six years ago it was rather surreal. You know, something that happens to other people, not to you. Yet, there we were with a confirmed diagnosis. After all of the “why’s” and “how’s” we both got back to being our strong selves and also back to the business of life and raising our two sons. I think I convinced myself that Rhonda would not be like others with MS; that her disease would not progress and would be more of an inconvenience than a life changer. But as time went on I began to realize that her MS, although not extremely aggressive, was taking a toll on her life. She suffered with pain, from minimal to extreme, on a daily basis. Her battle with fatigue was getting worse and she was spending more and more time in bed. Her cognitive issues were getting worse and her numbness was keeping her up most nights. She felt depressed because she could not do the things that a mother should be able to do, both for herself and her family. Looking back, I have no doubt that our MS situation was, however slowly, progressing and getting worse.
Rhonda and I often spoke about “someday”. Medicine is progressing. “Someday” she won’t have to take a shot every day. “Someday,” we would say, “maybe in ten years time, doctors will have an answer or maybe even a cure.” The disease did rob her of six years of her life but never her, or my, optimism. That being said, we could never have imagined the blessing that would find us or the speed with which it would do so. We first read about CCSVI around August of 2009. We couldn’t believe the information we were seeing. Rhonda was beyond diligent about her research. This was no easy task for sure because of her inability to focus or remember. Convinced that what she was reading was a truly groundbreaking approach, she relentlessly pursued what we both felt was a necessary course of action. Within 90 days of first hearing about CCSVI, Rhonda had her CCSVI procedure done at Stanford Medical Center. From my point her view, her results have been nothing less than miraculous. I will not go as far as to say that she is completely cured. Not yet, anyway. I will say that she has her life back. Her cognitive issues are completely gone. A good deal of her pain and numbness are also gone. Actually, most of her MS issues are either gone or have been reduced to the point that they are now a minor inconvenience. I have no doubt that, while more testing is needed, CCSVI will either prove to be what is now called MS or, at a minimum, a major contributing factor. I do hope that the medical community will move expeditiously through the testing phase.