Nobody likes having MS, let alone Primary Progressive MS (PPMS). One of the particularly frustrating aspects of having PPMS is that none of the several disease modifying drugs is FDA approved for me. It’s disappointing to hear neurologists and MS advocates speak in such an optimistic manner about the many wonderful new drugs that are approved or soon will be One well-known physician even refers to MS as a “highly treatable disease.” What complete BS!
Oops. Forgive me. There’s that frustration I mentioned.
I was diagnosed and treated for CCSVI by Dr. Salvatore Sclafani at Kings County Hospital Center in Brooklyn, New York, on March 17, 2010. The pre-procedure meeting, the procedure itself, and our post-procedure discussion were all very professionally conducted. Dr. Sclafani was careful to explain that we were at the very early stages of discovery regarding CCSVI treatment, and he reinforced my notion that expectations need to be managed. At the same time though, we both felt that we were participating in a potentially groundbreaking movement in the MS world.
During the venogram, Dr. Sclafani found stenosis in both internal jugular veins and the azygos vein. He performed balloon angioplasty on all three. I felt no side effects from the treatment. Afterward, I didn't feel worse. I didn't feel better. It felt as if I’d had no procedure done at all.
In early August I returned to Kings County Hospital Center to have an ultrasound examination, following the Zamboni criteria. The ultrasound indicated that I had none of the five criteria of CCSVI as defined by Dr. Zamboni.
My PPMS progression has been so slow and steady over the years that I cannot describe it without looking back six months or a year. I think about my tasks of daily living, and then try to remember how much more easily those tasks were completed in the past. When I visit my neurologist a couple of times per year, I don’t ask him how I’m progressing. He asks me.
So, did CCSVI treatment work for me? I saw no improvement in my condition from the treatment I received on March 17, 2010. But that didn't surprise me. I wasn't looking for improvements in my symptoms. I was only hoping that I would stop getting worse. Now that eight months have passed, I can state without reservation that my MS has continued to progress at the same slow, steady rate that is has since my diagnosis nine years ago.
What, then, is going on with my CCSVI and my MS? Here is where things stand:
- I’ve definitely not improved or even stabilized, as many others have (although not everyone).
- Based on what Dr. Sclafani saw in the March venogram, I almost certainly had CCSVI in my internal jugular veins and possibly in my azygos vein. He ballooned all three for good measure.
- Based on the ultrasound in early August, I likely no longer have CCSVI type problems in my internal jugular veins. We can’t know about the azygos, as the ultrasound test does not look at that vein.
- I may or may not have flow restrictions in various other central nervous system veins such as the lumbar and vertebral. Even if I knew that these veins had restrictions, we couldn’t know yet if this would affect my MS. Furthermore, even if we knew it could affect my MS we probably couldn’t treat those veins. Much more study is needed.
- There is nothing further that can be done for me right now relative to CCSVI, although as we learn more there may be procedures I can undergo later.
- Going forward, I need to keep my finger on the pulse of CCSVI research while not obsessing over it.
I am only one data point- a damned important one to me- but still only one data point. Dr. Gary Siskin, who has treated over 100 patients, recently commented that approximately 1/3 of his patients see a significant improvement, 1/3 of his patients see a modest improvement, and 1/3 of his patients see no improvement at all. I obviously fall into that last group.
Here’s my message to the wider MS community, and my friends who are working so hard on CCSVI issues: I am sticking with you. I am advocating for you. I am celebrating your successes. In return, please continue to listen to and acknowledge the disappointment that approximately one third of us feel when CCSVI treatment doesn’t work.
Here’s my message to my friends and loved ones: my medical challenges are daunting, but my emotional health remains strong. I welcome and appreciate your support, whatever form it may take.
And here’s my message to myself: It will not be beneficial for me to long for the healthy days of my past, or worry too much about my uncertain future. I need to stay in the moment, and enjoy each day for the gift that it is. After all, I am alive; I am loved; and blood is coursing through most if not all of my veins.
For a more in-depth accounting of my CCSVI experience, please read my blog - www.enjoyingtheride.com.
Although nobody wants to have MS, it’s no picnic watching your husband live with this damn disease either. I have been a cheerleader of sorts, as I have watched Mitch deal with this challenge. I have always trusted that he has done his research prior to trying a particular treatment option. Given his engineering background, I wouldn't expect anything less.
When Mitch started discussing the CCSVI theory with me, around November of 2009, I listened, but never anticipated that only four months later we would be in the car driving to Brooklyn, NY for his procedure.
The evening after our first day in Brooklyn we drove to Manhattan for dinner with Dr. Sclafani and some other CCSVI patients and loved ones. It was only then that I learned Mitch would be the eighth patient that Dr. Sclafani had performed this procedure on. I recall later, in the hotel, discussing with Mitch that he could have warned me how new this MS treatment was! Thankfully, I have that aforementioned trust that he "does his homework."
The next three days of this experience were long and mentally draining, mostly because of the number of hours I spent sitting in the hospital waiting, along with the number of hours I spent driving to and from the hospital, and then back to Maine. Anyone who has spent much time with me knows that one of my personality traits is the inability to sit still for long periods of time.
This summer we have traveled to Brooklyn two more times. The first of these trips was for a symposium on CCSVI. Mitch attended this, while my son and I were Manhattan tourists for the day. The second trip was specifically for Mitch to have an ultrasound to check his veins. During this ultrasound, I stayed with Mitch in the room to help him in and out of the bed. I was able to watch the pictures of the blood flowing through his veins on screen- not nearly as exciting as watching an ultrasound of a baby moving in the womb, but interesting nonetheless.
Given all this, how do I feel about our CCSVI experience and Mitch's continued disease progression? My answer is two-fold. First, although I am always hopeful, I have to be realistic. We’ve tried so many treatments, and none have worked so far. This is no different. Second, I believe that the best way to gauge his well-being is to use Mitch's feelings as a barometer. When he is upbeat and enjoying the ride, who am I not to enjoy the ride with him. I could create drama that others might expect, given his condition, but I don’t, and neither does he. I try to echo Mitch's philosophy on life, and that is to stay in the moment. This is how we lived before his diagnosis. Why would we let MS take that away from us?