On Wednesday, March 16, 2011, I will undergo a second round of CCSVI treatment, in a determined if not desperate attempt to slow the progression of my MS. This procedure will be performed by Dr. Gary Siskin, the chairman of the Radiology Department at Albany Medical Center. Why am I putting myself through this? Haven’t I already been down this road?

Hundreds of people with MS in the United States, and thousands around the world, have now been treated for CCSVI. It’s impossible to know the percentage of patients who have been pleased with the results. Many of the patients with positive outcomes (but not all) have shouted their success stories from the rooftops, and why not? They’ve made before-and-after YouTube videos. They’ve written blogs. They’ve been interviewed by magazines, newspapers, and local television stations. Most (but not all) of the people who have not benefited from CCSVI treatment have been quiet.

I’m one of those patients who has not benefited from treatment, and I’ve been forthcoming about it. In fact, I’ve tried to act as a spokesperson for people in my situation. Despite my own lack of improvement, I predict that when all the dust settles CCSVI will be recognized as a major factor in the etiology of MS. But I’ve asked my fellow MSers to bear in mind that a significant number of us are, at least for now, unable to attend the CCSVI party to which we’ve been so enthusiastically invited.

Because of my belief that CCSVI treatment is a key factor for so many people with MS, I volunteer for an organization called CCSVI Alliance. Their mission is:

CCSVI Alliance promotes education and research about CCSVI and its
relationship to Multiple Sclerosis (MS) by providing objective information
to the MS community, supporting medical investigations of CCSVI, and
fostering collaboration among patients, advocates, and professionals.

Please visit their website, at CCSVI.org, to donate or to learn more.

My CCSVI Diagnosis and Treatment Log details my first go-around with CCSVI treatment, exactly 364 days prior to this week’s second try. It seems increasingly unlikely that there is any delayed benefit yet to be felt from my March, 2010 treatment. My MS has continued to progress, unabated and with gusto, as if I was never treated.

It’s possible that the balloon angioplasty that Dr. Sclafani performed on me last year (or venoplasty, since we’re talking about veins instead of arteries) was only temporarily effective, and soon after treatment my veins reverted to their previous condition. This would explain my continued progression. The only way to know for sure is to undergo another venogram.

It’s also possible that the work that Dr. Sclafani did has remained intact (and I have a feeling that this may be the case), but something else is going on. Perhaps there are other CCSVI- related problems that have not yet been identified and repaired. I may have previously undiscovered stenosis (restrictions) in my jugular veins or azygos vein which need to be opened, or I may have restrictions in other veins which Dr. Siskin can, or more likely cannot, repair.

But I must also entertain the notion that perhaps my personal brand of MS is simply not correlated with poor blood flow in the veins that drain my central nervous system. Although many MS patients are convinced of an almost universal cause-and-effect relationship between CCSVI and all types of MS, I am not.

Why am I again submitting to treatment which has not previously worked for me? In short, I have no better options, and I’m running out of time. I’m currently wheelchair-bound, because my legs don’t work. A power wheelchair, especially my iBot, is a fine adaptation to compensate for an inability to walk. In other words, my quality of life is not greatly diminished for having been confined to a wheelchair. However, my arms and hands will soon be in the same condition as my legs. I don’t know of any assistive device that replaces the function of arms and hands as well as a wheelchair replaces the function of legs. I worry that my quality of life, and so my enjoyment thereof, may not endure this next assault.

The second reason that I’m trying CCSVI treatment again is that I don’t have any better options. There are exactly zero approved treatments for Primary Progressive Multiple Sclerosis. I have to do something. I can’t just sit here and wait for brilliant people to study, debate, verify, and eventually agree on a treatment or cure for this disease.

I decided to employ Dr. Siskin on this second treatment for a couple of reasons. First, he has emerged as the most experienced CCSVI treatment physician in the United States, having performed several hundred of these procedures in the last year. Second, I heard him speak at a CCSVI symposium in Brooklyn last summer, and I was very impressed with his approach to CCSVI. He has admitted on several occasions that approximately 1/3 of his patients see no benefit at all. This is consistent with my observations. Third, this will be another highly qualified physician poking around in my venous system. Dr. Sclafani, the interventional radiologist who performed my first CCSVI treatment, is no slouch. But I hope that a fresh set of eyes may notice something the first set of eyes didn’t.

I have only modest expectations for my procedure this week. As such, if I experience any improvements in my MS, you can be sure that it is not due to a placebo effect. I am a skeptic by nature (I don’t accept things based on faith or hope), but I’m not a pessimist (someone who always expects the worst possible outcome). I’m a fairly upbeat person. But how many times can I undergo experimental treatments for MS, and have them completely and utterly fail, before I learn to hedge my bets? If I had become emotionally invested in each treatment that I have tried over the years, I would have endured countless letdowns. I can’t go through life setting myself up for these disappointments.

I’ll keep you abreast of how my treatment goes. Wish me luck!