On March 16, 2011, I was treated a second time for a condition called CCSVI, which is thought by some to be associated with multiple sclerosis. My first treatment was on was on March 17, 2010. To read about that earlier procedure, click here.

The purpose of this post is to share some of the details about the 2011 procedure, performed by Dr. Gary Siskin at the Albany Medical Center. To read all of my posts about this recent treatment, click here.  Remember that in a blog format such as this the most recent post is at the top, and the oldest post is at the bottom.

Dr. Siskin first threaded the catheter from the right common femoral vein into my left internal jugular vein (LIJV). He injected contrast dye into the vein and captured x-ray images of how the dye behaved (flowed).  This procedure is called a venogram.  When performed by an experienced interventional radiologist, a venogram produces a simulation of how blood flows through veins. In a healthy internal jugular vein (IJV), when lying in a supine position (I was flat on my back throughout this procedure), the blood flows from the brain down the IJV toward the heart. In this procedure, since the catheter is threaded up from the heart to the top section of the IJV, the dye should flow down the IJV directly along the path of the catheter. In the video, below, the catheter is indicated by the red arrow.

However, in my LIJV no dye flows back down the internal jugular vein as it should. Instead, the dye flows mostly upwards toward the head and then down an alternate vein called the vertebral vein. If CCSVI theory is correct, then this is problematic. Click on the video below to see how the contrast dye, and therefore my blood, flows in my LIJV.

Notes on watching the videos in this blog post:
1.  Each video loops through the dye release process 3 times
2.  To enlarge the video, click on the YouTube logo in the bottom right corner of the video

LIJV, head neutral, pre-angioplasty

Based on the location of the flow obstruction in the LIJV, Dr. Siskin suspected that there may be something outside of the LIJV impinging on the vein, preventing normal blood flow in the proper direction. He asked me to turn my head 90° to the right, and then he repeated the venogram. The video below shows how contrast dye flows relatively well down the internal jugular vein, instead of down the vertebral vein, with my head in this position. But also note that at the location of the red arrow, there remains a flow restriction at the lower part of LIJV. This is the location of a valve that is often (theoretically) problematic in MS patients. In fact, in my 2010 procedure this valve was balloon dilated, but apparently did not remain dilated. A venous restriction is sometimes referred to as a stenosis, and a failure of a dilated stenosis to remain open is called restenosis. Please watch the video below.

LIJV, head turned 90 deg, pre-angioplasty

With my head still turned 90° to the right, Dr. Siskin inserted a balloon, 4 centimeters long and 14 millimeters in diameter, and dilated the valve section of my LIJV. The first image below shows how the vein resists the balloon at initial inflation, and the second image shows how the balloon eventually overcomes the stenosis and fully dilates. Dr. Siskin kept the balloon fully dilated for approximately 2 minutes.

Dr. Siskin repeated the imaging after dilating the vein (with my head still turned). The red arrow in the following video indicates where the dilation took place. You can notice improved flow in this section of the internal jugular vein, as compared to the previous video.

LIJV, head turned 90 deg, post-angioplasty

However, I can’t go through life with my head turned 90° to the right. Therefore, although he was able to treat the restriction in the lower part of my LIJV, when my head is in a neutral position I will still see little or no flow through that vein because of whatever is impinging on it. Dr. Siskin believes that a muscle is pressing on the vein in one position but not in another. He was unable to treat this condition. There might be some treatment options, but none are conventional, proven, or obvious. I will discuss this further in the next post. In addition, since these are normal structures within the neck that are impinging on my vein, I can’t even be sure that this type of compression is responsible for the symptoms I am experiencing.

Dr. Siskin then directed the catheter into my right internal jugular vein (RIJV) and repeated the venogram process. He saw much better flow in the right than in the left, but still noticed some stenosis at the area of the valve, so he dilated that valve with a balloon 4 centimeters long and 16 mm in diameter. See the image below. Dr. Siskin’s team has found that many patients have a dominant internal jugular vein, which means that one side is larger in diameter than the other and therefore carries more blood flow. In my case, perhaps fortunately, the RIJV is the dominant jugular vein.

Dr. Siskin then assessed my azygos vein, which is one of several veins that drains blood from the spinal cord. He did not find any obvious stenosis, but noted imperfect flow, and had some difficulty threading the catheter through a section of the azygos referred to as the arch. This is where a valve is present in many people. He therefore dilated the azygos arch, using a balloon of length 2 centimeters and diameter 10 mm. The angioplasty was performed 3 times so that the entire arch could be treated. A balloon of 2 cm in length was used so that the azygos arch was not distorted as much as it would have been if a 4 cm balloon was used. See those images below.
 

Dr. Siskin also inspected a vein in my pelvis for a condition called May-Thurner Syndrome, which he determined I do not have. See image below. In fact, Dr. Mandato, who is Dr. Siskin’s partner, just presented their paper on May-Thurner Syndrome at the Society of Interventional Radiology meeting, which stated that May-Thurner Syndrome does not occur more often in MS patients than in the population as a whole. Therefore, they no longer routinely check for this in the patients that they are treating.

In my next post I will reflect on how I feel the process went. Did it work? How (and when) will I know? Was this worth it? Will I ever do it again?

“There…we are done. I’ll see you in recovery,” said Dr. Siskin. One more CCSVI procedure was now in my rearview mirror. I don’t dread these- it’s not like real surgery- but still, it’s a relief when they withdraw that wire from your groin.

I was wheeled back into the prep room, which doubled as the recovery room. The same group of nurses was waiting to take care of me again. For the first hour of recovery, the rule was that I had to lie flat on my back. Nurses stopped by frequently to check on the tiny incision in my groin. I wasn’t allowed to eat, drink, or empty my bladder. Because I was still coming down off the sedative, I spent most of the time just lying there with my eyes closed, chatting with Kim, and reading a little on my Kindle (I love my new Kindle, shown on right).

The rules for the second hour of recovery were that I could sit up in bed, and eat and drink a little. I could pee into a urinal as long as I kept my butt and feet firmly planted on the bed. I tried that, but my bladder muscles simply refused to relax while I was in bed. No big deal. I devoured a turkey sandwich and drank some ginger ale, but not too much because of the full bladder thing. Oddly, hospitals and airplanes are the only places where I drink ginger ale.

After the two hour mark I emptied my bladder, had the IV removed, put my street clothes on, and transferred to my wheelchair. But I couldn’t leave until I was debriefed by Dr. Siskin. While waiting for him I accomplished two things. First, I gave the nursing staff an iBot demonstration. I showed them all the cool features except stair climbing, as there were none nearby. Everyone was appropriately amazed, especially by the balance mode.

The second thing I did was to speak with a fellow patient. A couple of weeks before my treatment I learned that a friend of a friend would be the person treated by Dr. Siskin immediately after me. I’ll call this patient “Jane.” I said to my nurse, “I know that there is a patient here by the name of Jane who is a friend of a friend. If you are able to, without violating any HIPPA rules, please ask her if she would like to speak with Mitch.”

The nurse correctly pointed out that, “Since acknowledging that any particular patient is here or not here would be a violation of HIPPA rules, I’m afraid I can’t help you.”

Enter technology. Jane and I each, independently, contacted our mutual friend using our cell phones and found out where one another was located in this large recovery area. I wheeled over and introduced myself to Jane and her friend. They are wonderful people, and we had a delightful chat.

Then Dr. Siskin sat with me and gave me a thorough explanation of the procedure, complete with hand sketches.

I recovered quickly. Kim and I returned to our hotel room, rested up a bit, caught up on our e-mails, and phoned a few people. I skyped with my friend Marc. We then went to the hospital cafeteria for dinner, watched American Idol, and turned in. Within a few hours I’d completely recovered and felt the same as I felt before the procedure. Insomnia-Mitch did not visit me that night, as he had the previous night, and I awoke the next day well rested.

On Thursday morning we packed, checked out, and headed to Dr. Siskin’s office for a follow-up ultrasound. Then we drove the four hours home. In my next post I’ll give you the nuts and bolts details of the procedure, and in my final post in this series I will talk about how I feel, post-procedure, and what the future may hold for me.

I apologize for breaking this up into so many posts, and making it into somewhat of a cliffhanger. I know that I can only hold your attention for 1,000 words or so, and frankly it takes considerable effort to write each post. Thanks for hanging in there with me.

My worst nightmare was coming true.

Everyone kept introducing themselves and telling me their names. Didn’t they know that the name-remembering part of my brain didn’t work, doesn’t work, never has worked, even before MS started eating away at my central nervous system? The staff at Albany Medical Center probably realized this and took great delight in tormenting me. I think the name-remembering part of my brain must share space with the joke-remembering part, because although I possess flawless comedic timing and delivery, alas, I cannot remember a joke to save my life.

Seriously though, everyone associated with the Albany Medical Center, on this day of my second CCSVI treatment, was courteous, professional, competent, and because they’ve completed over 500 of these procedures, well-practiced. The check-in was quick and efficient (yes, you read that correctly). Once I was in the prep room the nurses crawled all over me, preparing me for the procedure. This included changing me from my street clothes into a johnny, lifting me from my wheelchair into the hospital bed, and getting an IV started in my notoriously skittish arm veins. I noticed that they each wore identical blue pants and blue tops, in order to further name-confuse me. Obviously, everyone got the memo. Well played, nursing staff.

At one point I asked Kim to take a photograph of me, in my hospital bed, for the blog (see above). The nurse snapped, “No time for that! You need to help him fill out these papers. You want him to be ready in time, don’t you?” This nurse made it her singular mission in life to ensure that I was appropriately and promptly prepared. I know it’s not because she feared retribution from Dr. Siskin if she underperformed, he’s such a mild-mannered guy, but because she simply cared about doing the job right. I liked her and feared her a little at the same time.

At 11 o’clock, as scheduled, I was wheeled from the prep room into the procedure room. A group of new people started telling me their damn names, but this time they upped the ante. The staff not only had the same pants and tops on, but they also had identical hats and masks, for the sole purpose of making the name game that much more humiliating for me.

I was positioned comfortably on the procedure table, and instructed in the nicest possible way to essentially “not move a muscle.” They began administering the sedative through an IV. I felt sleepy and relaxed, but not loopy. I remember much of what was discussed and what transpired. Before I knew it, the catheter was threaded up into my left internal jugular vein. Then began the first of many sequences over the next 80 minutes where I was instructed to “hold your breath and don’t move.” During these times the contrast dye was injected into some part of my venous system, and a series of high-speed images was captured to determine and record how well the dye (and therefore, the blood) flowed through that particular section of vein.

The medical team operated like a well-oiled, yet compassionate and friendly machine. Here’s one little example: I always received the instruction to “hold your breath and don’t move” directly from Dr. Siskin. But I’m guessing that, sometime in the first hundred or so of these CCSVI treatment procedures, they realized that sometimes Dr. Siskin becomes so engrossed in what he sees on the image monitor that he forgets to tell the patient to resume breathing. So it was the responsibility of one of the identically clad nurses in the room to tell me that I could breathe again, in those 25% or so of instances where Dr. Siskin was otherwise mentally engaged. I’m very glad that whats-her-name was there.

There was one significant difference between how I felt during this procedure compared to how I felt during my first procedure in Brooklyn, last March. During that initial treatment, I was never really conscious of the balloon expanding, or if I was, it was a mild sensation. On several occasions during this most recent CCSVI treatment, I would characterize the balloon expansion as, at least very temporarily, a bit painful. I grimaced a couple of times. Dr. Siskin offered to increase the dosage of sedative, to numb the pain, but I declined (I think). I hesitate to even mention this, because the last thing I want to do is worry any MS patients who are on the fence about whether to have CCSVI treatment or not, but I think it might be germane to my story, and this is why. Because I experienced more discomfort, perhaps the veins were more robustly ballooned, and will remain open for a longer period of time…or maybe not.

During, and immediately after the procedure, I was made aware of the general results. I’ll share that level of detail with you in this post. After I was fully recovered from the sedative, Dr. Siskin sat with me and gave me a thorough accounting of what had transpired. I will share that detail with you, including images from the procedure, in subsequent posts.

Dr. Siskin ballooned the valves in the lower part of each of my two internal jugular veins and in the arch of the azygos vein, similar to what Dr. Sclafani had done last year. Additionally, he identified a flow restriction a few inches higher in my left internal jugular vein, which was position sensitive. That is, in a “head neutral” position, there is almost no flow passing through that vein. However, when I turn my head 90° to the right, blood flows freely. Dr. Siskin believes that a muscle is impinging on the vein in one position, but not in another. This problem was not treated, but we do have some options to consider going forward. More on that later.

Wait! I’m now remembering one of the recovery nurse’s names. I think it was Gail. She was planning to visit Maine this summer. Wait! I’m remembering something else. Stop me if you’ve already heard this one. A neurologist, a rabbi, and an MS patient are sitting at a bar one day…

The drive to Albany, where I had my second CCSVI treatment, is so much different than the drive to Brooklyn, where I had my first. This is true until you get about ten blocks from the Albany Medical Center, where the poor, inner-city section of Albany rivals any tough neighborhood in New York City.

But I can’t say enough good things about Dr. Siskin, his practice, and the Albany Medical Center staff and facilities.

On Tuesday, March 15, 2011, Kim and I arrived early enough to check into the hotel, which is attached to the hospital, before driving the 15 minutes to Dr. Siskin’s office. Anyone who is being treated by Dr. Siskin at the Albany Medical Center should strongly consider staying at the Hilton Garden Inn. It’s just so convenient, and is a decent hotel at a reasonable price.

After checking in, we drove to suburban Latham, New York, to the Capital Region Health Park, where Dr. Siskin’s office is located. Maine is a rural and somewhat backward state, so I’m easily impressed. I’ve never seen such a large and shiny Healthcare Mall before.

In the waiting room, we met a nice couple who had driven two days from North Bay, Ontario, for the wife’s CCSVI treatment. We shared their dismay about Canadians’ inability to obtain CCSVI treatment at home. I asked her if she had ever heard of CCSVI Alliance, and I don’t know who was more pleased, her or me, when she indicated that she loved the website and read it frequently, and I revealed that I volunteer for the organization.

But before we could chat very long, Dr. Siskin came out in the waiting room and introduced himself to us. He met with Kim and me in his office to discuss the upcoming procedure, and to give us his thoughts on CCSVI treatment in general. I enjoyed learning some of the details about how the catheter is threaded through the body, how the balloon is inflated, and how blood flow is assessed. As a chemical engineer, I dealt with flows of all sorts of materials through all types of piping and pumping systems. The analogy with blood flowing through veins is obvious. The meeting only ended because I ran out of questions, not because I was hurried out of the office, as is all too common in many such consultations.

As I’ve mentioned before, I find Dr. Siskin’s approach to CCSVI treatment to be refreshing. He acknowledges that we still know very little about CCSVI and its relationship to MS, and we know very little about the expected benefits, or lack thereof, for any particular individual. But nevertheless, he sees enough evidence to oblige the MS community by performing these procedures for us.

Next, a technician performed an ultrasound of my head and neck veins, using the Zamboni protocol. I don’t have the results yet, but will report them when I do. Dr. Siskin doesn’t use this “before” ultrasound to guide his procedure the following day. He’s simply gathering baseline data for comparison at a later time, if necessary.

Once the ultrasound was completed at about four o’clock in the afternoon, Kim and I were free for the rest of the day. My only restriction was that I couldn’t eat or drink anything after 3 am, in preparation for my 11 am procedure on Wednesday.

On Tuesday night Kim and I ate at the sports bar inside the hotel, and retired at a reasonable hour. It’s difficult to be sure, but by my closest approximation I may have managed two hours of fitful sleep. I’m a calm and cool person during daylight hours, but I sometimes transform into an irrational worrier when I can’t sleep. Daytime Mitch is ruled by reason, logic, and optimism. Insomnia Mitch is more like an adolescent girl overly concerned with pimples and what the mean girls might say to her tomorrow. I have no control over Insomnia Mitch.  Luckily he doesn’t show up every night, only on nights when sleep is particularly important. 

In my next post I’ll describe our eventful day on Wednesday- treatment day.

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!

“The truth does not change according to our ability to stomach it.” – Flannery O’Connor

Here’s a bit of truth: CCSVI treatment didn’t 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 six 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. This is difficult for me to report, for several reasons. First, I know that my friends and loved ones hoped that this treatment would benefit me in some way. Second, I know that the larger MS community holds its breath for good news from those of us who were among the first treated, because every success story brings hope. Third, I really thought this might work, and I am deeply disappointed that it didn’t.

So how do I feel about CCSVI, given its failure to address my disease progression? 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.

Our understanding of CCSVI is only in its infancy: how it’s related to MS, how to treat CCSVI, and how people with various types of MS react to the treatment. The complex network of veins that drain the central nervous system has never been studied from this perspective. It will take many years and many clinical trials before we develop a thorough understanding. I remain confident that when all is said and done, CCSVI will be considered the most important discovery, ever, for the treatment of MS.

And if a relatively simple procedure helps so many people, instead of pumping toxic, exorbitantly expensive drugs into our bodies day after day, year after year, so much the better.

What then, is next for me? Because there is nothing else that is at all promising for people with PPMS, and because both my mind and my gut tell me that this is a game changing idea, I still believe that CCSVI treatment is my best chance. Perhaps the impact from my treatment in March will be felt later. Perhaps, although he is an excellent physician, my doctor overlooked something during my venogram. Perhaps, as we learn more about CCSVI, new techniques will be discovered that can help people like me. I expect that I’ll undergo another venography procedure sometime in the not-too-distant future, just to make sure that we haven’t missed something.

If I turn out to be wrong, and CCSVI is a bust, I won’t lament the time I spent pursuing it for myself, or advocating it for others. It’s not like I have any better medical options to chase. The opportunity cost of my pursuit of CCSVI is nil.

I plan to remain heavily involved in the CCSVI world. I must admit though, all of the positive stories that I read about online and watch on YouTube do wear on me. I know that I should feel nothing but joy for every person who benefits from CCSVI treatment, and I do. But sometimes, overlaid with this joy, is a tiny bit of resentment because I didn’t benefit myself. I’m not proud of this, but I’d rather acknowledge these feelings and deal with them than deny their existence.

Interwoven with that tiny bit of resentment, is the notion that a minority of the MS community would prefer that I remain silent about my poor outcome. They only want to hear the good news, and they fear that admissions like mine only serve to embolden the CCSVI detractors. Most MS patients, however, want people like me to relate my treatment experiences no matter the outcome, and that’s what I’ve decided to do.

For a more detailed discussion of the battle between supporters and detractors of CCSVI treatment, click here.

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 isn’t the answer.

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: Keep telling the truth, and keep searching for the truth, even if it is sometimes difficult to stomach.

Image by meironke via Flickr

It is only possible to live happily ever after on a day-to-day basis.
  – Margaret Bonnano

Now that Kim and I have travelled to New York City three times in the past five months, for CCSVI related reasons, I find myself growing negligent in my sworn duty to hate the Big Apple. New York is beginning to grow on me.

I was raised to loathe New York City, primarily because our Boston sports teams competed with theirs. I not only hated the Yankees, Jets, and Knicks, but by extension the Empire State Building, Central Park, and musicals (both on-Broadway and off). Evolution has favored the human trait of “in-group loyalty.” Unfortunately, this trait naturally gives rise to “out-group hate.” Why? Maybe it’s because by denigrating outsiders, if we don’t entirely love the circumstances into which we are born at least our condition seems favorable by comparison.

Although New York City continues to grow on me, I won’t be moving there anytime soon. And don’t worry Red Sox Nation, there are some absolutes in this world after all. The sun will rise in the east tomorrow, a bear will shit in the woods tomorrow, and I will still hate the Yankees tomorrow (and musicals).

In March I was diagnosed with and treated for a condition called CCSVI, which is believed to be related to multiple sclerosis. This occurred at Brooklyn’s Kings County Hospital Center, under the direction of Dr. Salvatore Sclafani. That was NYC trip #1.  To read about my CCSVI experiences, click here.

In late July of 2010, Kim, Zach, and I traveled to New York to attend Dr. Sclafani’s CCSVI symposium. More precisely, I went for the symposium and Kim and Zach went for the sightseeing. They learned a lot about the New York City subway system that day – some good and some bad. This was NYC trip #2.

I thoroughly enjoyed the symposium. I was able to listen to and even rub elbows with some of the top CCSVI physicians and researchers in the world. I also met with several of my online MS/CCSVI buddies, and spent time with members of CCSVI Alliance, the non-profit organization that I volunteer for.  I had hoped to combine the symposium trip with an ultrasound examination at Kings County Hospital, but unfortunately the doctor who was trained in that procedure was unavailable on that day.

So, just two weeks later, Kim and I made NYC trip #3 for the aforementioned ultrasound test. Dr. Zamboni, the Italian physician who coined the term CCSVI, developed a specific doppler ultrasound protocol to determine if a patient does or does not have CCSVI. In order to meet the diagnostic criteria for CCSVI, a patient must demonstrate two or more of the following five criteria during the ultrasound:

1. Reflux (blood flowing in the wrong direction) in the internal jugular veins, in the vertebral veins, or both.
2. Reflux in the deep cerebral veins, and/or in other venous segments of the intracranial compartment.
3. Evidence of internal jugular vein narrowing (stenosis).
4. Blood flow not detected by doppler in one or both of the internal jugular veins or vertebral veins.
5. The cross sectional area of either internal jugular vein is wider in a sitting position than in the supine posture.

I met none of these criteria. Well, at least I don’t think I did. The examining physician, a colleague of Dr. Scalfani’s who was trained just a few weeks ago at Dr. Zamboni’s clinic in Italy, still considers the test somewhat subjective.  I am grateful that he was frank with me about that. He’s doing his best, but it’s not a straightforward task by any means.

How do I feel about the results of this latest visit to Brooklyn? Should I consider it good news that I don’t have CCSVI anymore, or should I consider it bad news that there is nothing more that can be done for me right now? Excellent question- I wish I had an answer. I wish I had a lot of answers.

What, then, is going on with my CCSVI and my MS? Here is where things stand:

• It’s still too early for me to say with certainty whether my disease progression is the same, slower, or non-existent. Stay tuned.
• It is not too early, however, for me to state that I’ve definitely not improved, 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 test this week, I likely no longer have CCSVI type problems in my internal jugular veins. We can’t know about the azygos, as this 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 about CCSVI there may be procedures I can undergo later.

What, then, is going on with my general sanity?  Here is where things stand:

• Going forward, I need to keep my finger on the pulse of CCSVI research while not obsessing over it.
• I will try to heed the words of Margaret Bonnano (at the top of this post), and “live happily ever after on a day-to-day basis.” It will not be helpful 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.
• I am alive; blood is coursing through most if not all of my veins; and despite everything I am still Enjoying the Ride.

Everyone wants to know how I’m doing after my CCSVI procedure. The answer is…I feel exactly the same as I did before my visit to Dr. Sclafani.  That may sound like bad news, but maybe it is, and maybe it isn’t.

Some people are personally invested in my outcome because they know me and care about me. Others are following my story because I represent another data point in what has become a global, open laboratory experiment. Our collective lab notes can be found at CCSVI websites, on Facebook, Twitter, YouTube, TIMS, and at a place we affectionately call the Blogosphere.

So I sit here and wonder- have the blood flow characteristics in my central nervous system improved enough to alter the course of my MS? Unfortunately, I have no answer today. As soon as I do have a clue, one way or the other, you’ll be the first to know (well, right after I tell Kim).

Before trying to evaluate the success or failure of my CCSVI procedure, I decided to re-read my earlier blog posts, so that I could be reminded of what my expectations were. I’m glad I wrote them down, because expectations are notoriously fluid over time. Here’s some of what I wrote, from the oldest post to the most recent:

“…people like me who have already suffered significant damage to our central nervous systems will not see much, if any, improvement in our current conditions. We would simply stop getting worse. I need to stop getting worse, like, yesterday. Getting better can wait.”

“This concept has such upside potential that I find myself temporarily disinterested in all other MS research. For the moment, everything else is just so much background noise to me.”

“Given the speed at which my MS is progressing, patience puts me at more risk than taking early action does.  CCSVI remains my best chance to halt the progression of this disease before it completely consumes me.”

“Although I am very encouraged by the possible connection between CCSVI and MS, I have to be realistic about the chances that this will make a difference in my life. In other words, I am managing my expectations. This is how I operate. Others, in a similar situation, might effuse optimism. To each his own. Perhaps this will slow down or stop the progression of the disease. Maybe it won’t help at all. But one thing is certain. If I do nothing, then I know where this thing is headed.”

“No miracle changes on the operating table. It may take me many months to assess the impact. No matter the final results, it was a most interesting experience.”

“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?”

“Because it may be a long while before I know if this CCSVI treatment helped my disease progression or not, I’m unsure of how to comport myself. Should I carry on as if I’m cured or as if I’m still sick?

That’s a trick question. Forgive me. The answer is the same no matter the outcome of my CCSVI treatment. To the best of my ability I’m going to live my life one day at a time, hope for the best, prepare for the worst, and treat each day as if it could be my last. I encourage each of you to do the same.”

Several themes stand out in these earlier posts. First, I had modest and realistic expectations. Although there have been many accounts from CCSVI patients about immediate improvements, as a person with advanced PPMS I had no expectations in that regard. I only hoped to stop the progression. Second, before I had CCSVI treatment I felt that it would take six months or a year to assess its impact. It’s only been twelve weeks. Third, even if I see no benefit from CCSVI treatment, I will not regret having tried.  

Since March 17th, I have seen no improvements. I expected none. Over the same time period I have experienced no disease progression. I expected none.  Twelve weeks is simply too short of a period to notice disease progression for me. 

There are two potential story lines, either one of which may be playing out right now:

1. The procedure had no positive effect on my disease progression.
2. The procedure slowed or stopped my disease progression.

A third scenario may be overlaid on either of these though, just to complicate matters. It may be that the repair was not permanent. The stenosis that was opened using angioplasty may have returned (restenosis). I expect to have a follow-up visit with Dr. Sclafani at six months, which will be September of 2010, to determine if the areas of stenosis have remained open. I’ll have this exam whether or not I believe my disease progression has stopped.

For me, then, it remains a waiting game. Is the uncertainty difficult to bear? Sure it is. However, it’s preferable to the grim certainty I would have faced if I had tried nothing at all (and ‘nothing at all’ is exactly the recommended course of action by many physicians and other experts, none of whom walk in my shoes).

(Photo credit: Wikipedia)

The world is a tragedy to those who feel, but a comedy to those who think.  – Horace Walpole

My journey through CCSVI self-education, diagnosis, and treatment has been one of the most remarkable experiences of my life, whether or not I ever see any benefit from it.

So with all that I have learned and all that I have now experienced, what is my position on the CCSVI – MS connection? From a purely scientific point of view, nothing is yet proven. We have pilot studies. We have anecdotal evidence. We have well thought out theories. We have incredible enthusiasm among patients and some doctors. We have trials in progress (not enough, mind you). We simply don’t have irrefutable, scientific proof of the nature of the connection yet, especially for the relatively rare primary progressive MS (my type).

I do have a scientific background, and that part of me will not be satisfied until much more data is independently collected and analyzed. But I am also an MS patient and an MS advocate. This side of me does not demand the same burden of proof as my scientific side does. The good news is that I don’t have to choose a single perspective. I can honor them both.

I am personally convinced that to some extent CCSVI contributes to or even causes MS, although I can’t prove it. I don’t know how robust that relationship is, but I feel that there is something profound going on here. Again, I am less informed and therefore less confident about the relationship between CCSVI and primary progressive MS than I am about the relationship between CCSVI and the more common relapsing remitting MS.

Given this, what do I believe should happen next? I’m glad you asked.

I believe that every person on the planet with clinically definite multiple sclerosis should be tested for CCSVI. Unfortunately, I’m not exactly sure what I mean by “tested.”  Relying on the run-of-the-mill MRV and ultrasound examinations isn’t the answer. There are only a few clinics in the world that are proficient at using these noninvasive tests to diagnose CCSVI. That is not a reason to stop using these tests, but rather a reason to become better at using them- through practice. The gold standard is the catheter venogram, and even that needs to be performed by an interventional radiologist who has some level of competency or at least genuine interest in CCSVI. Every MS patient deserves to know if the veins that drain their central nervous system are functioning properly, and they deserve to know that now.

I believe that every MS patient on the planet who shows evidence of CCSVI should be entitled to have it treated by a method agreed upon by patient and doctor. This might include stents, angioplasty, open surgery, etc.

I believe that CCSVI is the most promising area of research into the root cause of multiple sclerosis, and should be funded accordingly. I’m not (yet) calling for all other research into causes and treatments to stop, but our emphasis should be on CCSVI. Today, the percentage of MS research dollars allocated to CCSVI is grossly disproportionate to its potential benefit.

Given this, what is my commitment to the CCSVI cause? I’m glad you asked.

I personally commit to furthering the cause of CCSVI education and research. One of the ways I will do this is through CCSVI Alliance. They will be launching their website at http://www.ccsvi.org/ soon. I’ll also continue to advocate for CCSVI research and education through this blog. I’ll promise to speak about CCSVI with every MS patient or professional who will listen to me. I will commit to share my images, data, and personal experiences about my CCSVI diagnosis and treatment with anyone, anywhere, any time.

I need to thank a few people for helping me along the journey that culminated in my treatment for CCSVI on March 17, 2010:

• Dr. Sclafani, Holly Barr, and the rest of the team at King’s County Hospital Center for taking up the cause of diagnosing and treating MS patients who have CCSVI, and for taking such great care of me while I was a patient there.

• Drs. Zamboni, Schelling, Simka, Dake, Haacke and Zivadinov for advancing the cause.

• So many other doctors around the world who, although less well known than those listed above, are also studying CCSVI, and performing diagnosis and treatment of patients.

• My primary care physician, my neurologist, and their teams including Judy and Rebecca, all of whom supported me.

• Patients and patient advocates like Jeff and Joan Beal, Marie, Sharon, and others who become true leaders in the CCSVI/MS cause.

• My personal MS friends who I have spent countless hours discussing this with, including: Marc, Neen, Cheryl, Barbara, Kimberly, Lew, Al and so many others, and especially the group of MS patients who took the initiative to recruit Dr. Sclafani to the CCSVI cause.

• My two fierce angels, who befriended me and then introduced me to Dr. Sclafani- Michelle and Randi. Both have hearts of gold, but as a matter of both gratitude and self preservation I’m going to do my best to never get on their bad sides.

• My father, my two brothers and their wives, my two wonderful children, Kim’s parents, and all my other friends and relatives who have given me so much support, not only during my CCSVI adventure, but for the past 8½ years that I’ve battled this disease.

• My late mother, for all she taught me about living a disabled life with grace and dignity.

• And most of all, Kim. Words cannot express how grateful I am that I share my life with you.   

Because it may be a long while before I know if this CCSVI treatment helped my disease progression or not, I’m unsure of how to comport myself. Should I carry on as if I’m cured or as if I’m still sick?

That’s a trick question. Forgive me. The answer is the same no matter the outcome of my CCSVI treatment. To the best of my ability I’m going to live my life one day at a time, hope for the best, prepare for the worst, and treat each day as if it could be my last. I encourage each of you to do the same.

To see all of my CCSVI Diagnosis and Treatment Log Entries, click here.

Postscript: I apologize for the barrage of clichés at the end. Sometimes you just can’t improve upon time-tested wisdom. Regarding the future of this blog, I have no plans for it to become the CCSVI Channel (we are launching CCSVI.org for that purpose). CCSVI will certainly be one of my more common topics here, but I will make an effort to re-broaden my perspective to include more general topics about living a disabled life. For example, check back in late April to read about, and see some pictures of, what it is like to go on a Caribbean cruise in the iBOT wheelchair. Hint: although I will derive satisfaction from blogging about the cruise, just maybe that’s not the only reason I am going on it.

In Log Entry #6 I wrote about what the experience was like for me during the actual CCSVI procedure. Here, in Log Entry #7, I’ll get into the details about the abnormalities that were found, and the actions taken to correct them. To catch up on my complete CCSVI Diagnosis and Treatment log, click here (and then scroll down). 

What an amazing experience it was.

Right Internal Jugular

An angiogram, which is an X-ray test using a special dye and camera to take pictures of the blood flow in the vein, was performed in the right internal jugular vein. This revealed a short segment stenosis adjacent to the confluence of the brachiocephalic vein. The diameter reduction associated with this stenosis was approximately 60%. The more important number, relative to flow restriction, is the cross sectional area reduction which in this case was approximately 85%.

Multiple collateral veins were noted at this location. Collateral veins indicate attempts by the body to establish bypass flow around an obstruction. Dr. Sclafani inserted the intravascular ultrasound device (IVUS) and confirmed the stenosis. A balloon was inserted, and the vein was dilated multiple times. Another angiogram was performed after dilation which indicated improved flow, diminished flow through collaterals, and no stenosis. Note that the nominal diameter of this blood vessel was 12 mm. Dr. Sclafani prefers to slightly over-dilate the vessel in these instances, and so a 14mm x 4 cm balloon was used.  Click on any image to enlarge it. 

From left to right, the first image shows the stenosis during angiogram. The second image shows the balloon partially inflated. Note evidence of the stenosis resisting dilation. The third image shows the vein fully dilated.

Left Internal Jugular

An angiogram was performed in the left internal jugular vein. This revealed a stenosis at the confluence with the subclavian vein. The degree of narrowing was similar to that in the right internal jugular vein, approximately 60% diameter reduction and 85% cross sectional area reduction. Collateral veins were noted at this location. The IVUS probe was inserted and confirmed stenosis. A 14 mm x 4 cm balloon was inserted, and the vein was dilated multiple times. Another angiogram was performed after dilation which indicated improved flow, diminished flow through collaterals, and no stenosis.



The above image shows the stenosis during angiogram.





The above images show the balloon during inflation.  Note evidence of the stenosis resisting dilation.



Above, angiogram after dilation, showing improved flow through the vein.

Azygos Vein

An angiogram was performed and indicated an abrupt lack of filling approximately 4 cm from the junction between the azygos and the superior vena cava. Dr. Sclafani inserted the IVUS device, which revealed a valve that was failing to completely open. This area was dilated with a 10 mm x 2 cm balloon. Note that the nominal vessel diameter at this location was approximately 8 mm. Another angiogram was performed, and improved flow was noted.

Above is an image of a shorter balloon being used to dilate the azygos at a relatively sharp turn in the vein.

Vertebral Veins

An angiogram was performed on the right vertebral vein. Stenosis was noted, but not treated. This is a smaller vein, and Dr. Sclafani was not comfortable performing angioplasty on it.

An angiogram was performed on the left vertebral vein, indicating that the vein branched into two smaller veins, which is abnormal. No treatment was attempted.

IVUS Images

Dr. Sclafani is innovating the use of IVUS technology in CCSVI diagnosis. I’ll have to take Dr. Sclafani’s word regarding what these images show. Maybe they are like the 3-D pictures that were so popular in the 1990’s. You remember- stare at them long enough and you see dolphins jumping over rainbows (or am I thinking about something else altogether). Anyway, here are some example images.

Above, the image to the left shows narrowing of the left internal jugular vein. The image to the right shows the same vein distended during inspiration (breathing in). Wait! I think I see it now. Do you?

The images above show an incompletely opening valve.  I kinda see it.

Significance of findings and treatment

Most of the public discourse regarding CCSVI has been regarding the internal jugular veins and the azygos vein, so I will address these first.  All three veins showed some type of stenosis, which is a significant finding. The fact that all three stenoses were repaired after angioplasty is potentially significant for my disease progression. 

On the other side of the equation, it is unknown whether the repair of these stenoses will be permanent. Furthermore, since most of my lesion load is in the cervical spine, it is unclear how much benefit I will see from even permanent treatment of stenoses in the internal jugular veins.

The findings of stenosis in the vertebral veins may be significant, given the location of my primary lesion load. In my situation, the vertebral veins may be a more important factor than they are in patients with a lesion load primarily in the brain. This remains to be seen.

Below is an MRI image of my cervical spine. This is the problem we are trying to solve (or at least halt the further progression of).  Arrows indicate MS lesions.

The Bottom Line

I had abnormalities in five out of five veins examined- all are blood vessels that drain my central nervous system. Therefore, it can be said that I had significant CCSVI. The three larger veins were all treated with angioplasty. The two smaller vertebral veins were not treated. One day I hope that we can attempt to treat at least one of these vertebral veins.

Only time will tell if Dr. Sclafani’s efforts were enough to slow or even stop the progression of my MS. I can only hope.