Yesterday, I visited Dr. Gary Siskin's office in Albany, New York to follow-up on my March CCSVI treatment.
I just did a count. This is my 40th CCSVI post. Don’t believe me? Click here. For my new readers, at the bottom of this post* is a brief overview of CCSVI, and my involvement with it. For the rest of you…
On the drive to Dr. Siskin's office on Monday, I posted the following status update to Facebook (don't worry, my wife was driving):
“In Albany for CCSVI checkup tomorrow.”In retrospect, that was a mistake. I knew that this was a routine visit to simply confirm what I had expected all along – that CCSVI treatment didn't work for me, and that I've exhausted all reasonable avenues for treatment. I only meant to indicate to my Facebook friends what I was up to for the next couple of days. The comments to my post surprised me, although they shouldn't have. People wished me luck. They were hopeful and encouraging, even some with prayers for a positive outcome. I’m still learning how to maneuver in this new world of social media, but the lesson I learned on Monday was that you don't put up a message that is so cryptic that it causes your friends and loved ones to have false hope. If I had it to do over again I would not have posted at all, or maybe I would've posted a YouTube link showing cute kittens.
On the other hand, it certainly is nice to know that so many people care and made the effort to wish me well. I am blessed in that way. Thanks for all of your supportive comments, and I apologize for leading you astray.
But the bottom line is this. Dr. Siskin and I both agree that I fall into that one third or so of MS patients who show no positive benefit from CCSVI treatment. His ultrasound examination on Tuesday revealed that I no longer have poor blood flow in my jugular veins; I no longer have CCSVI. Yet, I’ve seen zero improvements in my condition in the 16 months or so that I've been treated (March of 2010 by Dr. Sclafani and March of 2011 by Dr. Siskin). In fact, my condition has continued to deteriorate at about the same pace as it has for the past 10 years. Dr. Siskin politely and reluctantly discharged me from his care.
A quick aside for some of the more seasoned CCSVI readers – I realize that the ultrasound test does not measure blood flow through the azygos vein. However, both Dr. Sclafani and Dr. Siskin thoroughly ballooned the azygos, even though there was not strong evidence of a restriction.
And so ends my personal CCSVI saga. I need to move on and stop chasing something that clearly is not the answer for me. Sure, I'll continue to monitor the progress of CCSVI treatment and research, and if new information comes to light that may impact my situation I won't hesitate to revisit CCSVI. But my instincts tell me that this will be years down the road, if ever.
I remain optimistic that CCSVI is a significant factor for many patients with multiple sclerosis. I will continue to support the MS community as we search for answers about exactly how CCSVI and MS are related, and how MS patients can benefit from treatment.
In return, all I ask from the CCSVI community is that you don't forget us- the significant population of MS patients who simply don't benefit from CCSVI treatment. Don't lump us in with the naysayers who consider CCSVI theory to be bogus. That's not it at all. Also, please don't make broad and unsubstantiated statements like "CCSVI is clearly the root cause of MS," or "nearly every MS patient who is treated sees some benefit,” at least until more research supports such statements.
Don't worry about me. I'll be okay. If you need something to worry about, here's a list of ideas:
· Republicans taking over the Senate
· Democrats taking over the house
· just about any politician you've ever heard of being elected president
· global warming
· the Yankees signing the entire starting lineup of the American League All-Star team
· your cell phone going off at a funeral, with your AC/DC “Hell’s Bells” ringtone at maximum volume
or, my personal favorite…
· arriving at work only to realize that you forgot to wear pants
*Quick overview of CCSVI:
Dr. Paulo Zamboni, an Italian vascular surgeon, has proposed and supported the theory that restrictions in the veins that drain the brain and spinal cord have a significant causative relationship to multiple sclerosis. In fact, when he used balloon angioplasty to treat these restrictions, he found that many patients not only stopped getting worse, but actually started getting better. Thousands of patients around the world have since been treated by a variety of clinics. For a thorough discussion by a panel of expert physicians, click here.
I've had this treatment twice – once in March of 2010 and more recently in March of 2011. CCSVI theory has stirred significant controversy in the MS world. Many patients and advocates demand meaningful research and immediate availability of treatment. The neurological community, the doctors have traditionally treated MS patients, are highly skeptical and either dismiss CCSVI theory altogether (which troubles me greatly), or want to proceed at a very deliberate pace, delaying benefits for patients by many years (which I don't like, but I get).
For more information on CCSVI, visit CCSVI Alliance.