“Life is either a daring adventure or nothing.”  Helen Keller

I can’t recall the precise moment when I decided that CCSVI was a legitimate theory about the root cause of MS. Probably it was in October of 2009. I was influenced, like so many of us are, by my friend the Wheelchair Kamikaze. If he thinks something is legitimate, it usually is. CCSVI really became clear to me when I sat down and spent about 6 hours reading through the TIMS message board. From that point forward, all other theories about treating MS became just so much background noise. Sorry, Big Pharma.

I will relate the rest of my CCSVI diagnosis and treatment story in two parts. This post will address what the experience was like from a patient’s perspective- mine. The second post will go into more detail about what was found in my veins, and exactly how it was treated by Dr. Sclafani, at King’s County Hospital Center in Brooklyn, NY.  Before I publish that second post, I’ll need to run it by Dr. Sclafani for accuracy (see the photo of the good doctor and me at top, with a photo of one of my veins on the monitor).

Although I approached this CCSVI adventure with a mixture of optimism and realism, I didn’t feel any apprehension. After I made the decision to follow this road, I never looked back. I was not confident in the result, but I was convinced that I had no better option.

I’ll pick up the story on Wednesday, St. Patrick’s Day, 2010 (see previous posts for an accounting of the days leading up to my procedure day). Kim and I arrived at the hospital around 11:30, because our new friend, Barbara, was being treated by Dr. Sclafani first. Holly, Dr. Sclafani’s capable assistant escorted us to the surgical intake area, and handed us off to that team. I filled out some paperwork, and we waited and waited. Finally, the surgical nurse came out and led me into the prep area.   

Kim helped me change from my street clothes into some surgical gowns that, well, were only marginally better than being naked. But you soon lose any semblance of modesty while undergoing this procedure, given that the doctors are operating from an access point near your groin.

The nurse started an IV in my arm. She was successful on the second try, which is par for the course for me. The nurses and Kim together transferred me from my wheelchair to a stretcher. Kim was allowed to stay by my side until it was time to move me into the operating room, which happened about 30 minutes after Barbara’s procedure was done.

Once I was in the operating room the nurses and technicians hooked me up to various monitors, and began to prep the area where the catheter would be inserted. When Dr. Sclafani arrived he stopped the show for a minute to conduct some legal, and frankly polite, formalities. He introduced his team and asked me to introduce myself. He asked me why I was there, and what procedure I was expecting to receive. This is a required step in New York to prevent medical errors, like doing brain surgery on a patient with tennis elbow, for example.

After I was given the local anesthesia at the injection point, there was no more pain involved with this procedure. There were, however, some very odd sensations when the catheter was moved around my venous system, when dye was released into my veins, and when balloons were inflated. It was all good though. That was where I wanted to be, and those were the experiences I wanted to have.

Dr. Sclafani first examined my right internal jugular vein. I could actually hear the whoosh sound of the dye as it was released into my vein. By watching the behavior of the dye on a monitor, and by using a tiny ultrasound device from inside the vein, he found stenosis in the right jugular, and ballooned it. He also found very similar stenosis in the left jugular, and ballooned that. Nice symmetry, huh? He identified a problem with a valve in my azygos vein, and ballooned it. He also found issues in both of my vertebral veins but was not able to correct those.

I didn’t always feel the catheter moving around in my chest and neck, but once in a while I could sense its location.  But again, these sensations were subtle, and not at all frightening.  I could sometimes feel when the balloon was being expanded, and other times I could not.  When I felt it, it was not a sharp sensation, but rather like a momentary feeling of gas (the burping kind of gas).

Once the procedure was complete, the catheter was removed. A nurse applied significant pressure to the injection site for 20 minutes, and then covered it with a garden variety band-aid. I was then transferred from the operating table to a stretcher, and wheeled off to another room, where I had to lie still for an hour to let the injection site completely heal.

I love my wife dearly, and she was a rock for me the entire week. She really took care of me. I’m blessed to have her. But, when she walked into the recovery room with a sandwich in her hand, I may have shown the sandwich a little more love and appreciation than I did my wife. After all, I’d been fasting for quite a few hours. Sorry honey.

Although we had discussed the possibility of my spending the night in the hospital, I think that Dr. Sclafani is finding this to be generally unnecessary. So we drove back to the hotel, and I enjoyed a comfortable night’s sleep. At about 11:00 on Thursday Kim and I met with Dr. Sclafani to go over the procedure and the images in detail. We were home in Maine by 10:00 Thursday night. What an experience!

Dr. Sclafani’s assistant, Holly, is an amazing woman (picture on right). She is now managing the entire CCSVI patient workload, while still doing her “day job” for Dr. Sclafani.  I’ve received emails and calls from her at some pretty odd hours of the day, which speaks to her dedication to her patients. She knows she is doing important work, and thrives on it.

Each time I met with Dr. Sclafani this week, I became more impressed with him. He cares deeply about his patients, and cares relatively little about what others think of his foray into experimental MS treatment (and I mean this in a good way). The word “maverick” comes to mind. Yet, he is anything but reckless. He’s just the sort of doctor that the CCSVI movement needs.

As soon as I can I will post more details about what was found, and how it was treated.

How am I doing, you ask? I’m doing just fine, thank you. Ask me again in six months or a year, and I may be able to tell you if this procedure had any positive effect on my disease progression.  Wouldn’t that be something?