The Future- Mine and Yours

(Photo credit: Sean MacEntee)

For those of us afflicted with a progressive, incurable disease, time is not on our side. The younger the patient, the more likely he or she will eventually benefit from life-changing advances in medical technology. But I am fast approaching that age and that level of disability where my own prospects are fading. Even if I live thirty more years, and the mysteries of my disease are solved in ten years’ time, I’ll either be too old or too far gone to capitalize on it. Such is my likely fate, and I accept it (although this is not to say that I have given up all hope for improvement, as evidenced by my two recent CCSVI treatments).

As dismal as my circumstances may appear on the surface, and as likely as it is that my descendants will regard my life as having been needlessly tragic (in light of the inevitable, future cure for MS that I’ll only miss by a decade or so), I’m a hell of a lot better off than any of my ancestors would’ve been with the same affliction. My disease is wreaking havoc on my body in the same way that it has for MS patients throughout history, but because of wheelchairs like my iBot, public institutions like Social Security, improvements in community accessibility, computer networking, and comfort medicine, I can endure it so much more easily than people 20, 100, or 5000 years ago. For that I am grateful.

Now let’s broaden the scope of this discussion – beyond me and my particular disease. Our children, and especially our grandchildren, will live in a world so unlike ours that it is nearly impossible for our puny brains to envision it. The rate of advancement in the field of medical/biological technology, particularly in terms of genetics, is mind-boggling. Similarly, the pace of innovation in computer technology is growing exponentially.

Rather than bore you with my layperson’s understanding of these developments, I will instead share the following videos. Please keep an open mind, and at the same time acknowledge that the success rate of people who publicly forecast the future has always been poor. The predictions that these gentlemen make may not come true in the period of time that they propose. In fact, they may never come true at all. But their insights regarding the trends that are propelling us forward are invaluable.

The first video is from a TED conference in 2011. Medical ethicist Dr. Harvey Fineberg discusses how humans have evolved to this point, and how our continued evolution may be quite different (something he calls neo-evolution). I consider his presentation to be rather mainstream and uncontroversial. He doesn’t make bold predictions, but instead summarizes the various paths-forward and allows the viewer to draw his own conclusions. Enjoy.

This second video is from a 2009 TED talk by Ray Kurzweil. Kurzweil is an American author, inventor, and futurist. He predicts a technological singularity, such that human life and computer intelligence (artificial intelligence) become almost indistinguishable from one another. Kurzweil predicts that this singularity will occur as early as 2045. Compared to Dr. Fineberg, Kurzweil is a bit more radical, bold, and controversial. But who is to say that he is any less accurate? Only time will tell. Again, all of his predictions may not come to be, but the directions and trends that he identifies are indisputable. Enjoy.

And here is a bonus talk from Kurzweil, if you just can’t get enough of him (I can’t):

The wildcard here – the reason that none of what these gentlemen predict may come to fruition – is that we might destroy ourselves before we ever get there.  Think of the countless Hollywood movies depicting one or another doomsday scenario. Perhaps one of these may come to be, or perhaps some other malady, as yet unimagined by Hollywood minds, will befall us. Remember, nobody envisioned 9-11 before it happened. 

If we can tiptoe through this minefield, then we have a chance to witness the medical and computer advances discussed in the above videos. Otherwise, if we screw this up, or even have one really bad day, our species will regress to an earlier period in our social evolution, or we will perish from this planet entirely.

That would suck.

I am saddened by my inevitable mortality, not because I fear death (although the process of dying seems rather unpleasant in several of its more common manifestations), but because I would very much like to stick around and see how this all plays out.

 

Kindle

I defy you to name a more amiable and lovely 18-year-old than Libby, my niece. She is simply a joy to be around. Libby and her parents recently paid us a visit, and she introduced me to her Kindle, an e-reader sold by Amazon.com. I was aware of its existence, but I’d never seen one first hand.

I have always been a bit of a purist when it comes to books. To select my next book, I prefer browsing through Borders as opposed to searching on Amazon.com. Yet, the practicalities and the cost savings have made my trips to Borders few and far between. When I read a book I like to feel it in my hands. My eyes are calibrated for ink on paper. All of my finished books go on the shelf beside my Junior High Chess Championship trophy. “Hey everyone, look what I read.” E-books yield none of the pleasures described above (or do they).

After holding the Kindle in my hands, I was most struck by how thin and light it was. Also, I expected a typical computer type display – an LCD screen. But instead, the Kindle has this unique interface that reads as softly as the page of a book.

Libby showed me all the cool features, and taught me that Kindle books actually cost less than hardcover books (could I afford not to buy a Kindle?). Libby explained how she can order books and have them downloaded within sixty seconds, not delivered in seven days, and without shipping costs. In no time at all, I felt that old familiar pull I have for cool, new gadgets.  I would have a Kindle.

Here’s the deal.  Reading books and newspapers has become a physical challenge for me. I find hardcover books to be heavy, and I have trouble finding a comfortable position to set the book in so that I can turn the pages with ease. Toting books around to places like parks and waiting rooms is a chore.

Kim and I had been on a bit of a spending spree, however, what with the new power chair in my van and the new power bed in my bedroom. So I put the Kindle (a power book of sorts) on my mental wish list. It's not expensive- like a TV set or a laptop computer- only $139. Maybe I would get it for Father's Day, on my birthday, or at Christmas. Despite my reluctance to dole out the cash for a Kindle, I never stopped talking about it.

A couple of weeks after Libby's visit, Kim volunteered to play in a charity basketball game – the teachers versus the kids at her middle school. There was also a raffle. Have I mentioned that Kim wins a lot of raffles and various other contests? We almost never pay for tickets to concerts, and we often dine for free. Back in 1986, when we were just starting out, she won a $1,000 shopping spree. We were so poor at the time that it felt like we had won the Powerball jackpot.

When Kim came home from the charity basketball game she sported a sly grin, having thought for the last 30 minutes or so how this would play out.  I noticed that she clutched a shopping bag in her right hand, and she said, "You are going to love me."

I looked at the bag, and I began to imagine the possibilities. Often, Kim comes home from events like these with leftover goodies. "Chocolate?" I dared to ask.

"Oh no," she responded, "It’s something much better than that." I couldn't, for the life of me, fathom what could be better than chocolate.

She reached in the bag and pulled out a box, of just the right size, with Amazon.com printed on the side. My heart rate jumped.

"No!" I said.

“Yes!" came her reply.

I opened the box and inside was a shiny new Kindle. I was more delighted than a child on Christmas morning.

The Kindle has been everything I hoped it would be. It has reinvigorated my passion for reading. I can read wherever and whenever I like. The Kindle fits nicely in the pouch of my wheelchair, and I can take it with me wherever I go. Best of all, the only physical requirement is that I can wiggle my right thumb ever so slightly in order to operate the Kindle and turn its virtual pages. That should be doable for a while.

I went online and found a protective case that doubles as a stand. See the photo to the right.

I especially appreciate the combined benefit of these two new toys- my Kindle and my Power Bob bed. After all, isn't reading in bed one of life's finer pleasures?

Power Bob

Why is it that two particular types of retailers treat consumers as if we are complete idiots? Yes, I’m referring to auto dealerships and discount furniture stores, and their inane commercials. Although they annoy me to no end, I have been known to purchase items from these establishments if they have a great deal. I even bought a car once from a dealer who called himself Jolly John.

In New England, the discount furniture market is utterly dominated by a chain called Bob's Discount Furniture. Bob's commercials are produced as if three-year-old children are the target market for his sofas and dining room tables. But this guy is taking his quirky persona all the way to the bank. He owns more than 40 stores, and if he’s not near you on the east coast yet, he soon will be. As a result, he lives quite comfortably, thank you.

So what does this have to do with me (notice how almost all of my blog posts have something to do with me)? Here’s the deal. Once I'm in bed, I am kinda stuck there in terms of what positions I can easily get myself into. I can't sit up to watch TV or read. I can't raise my knees up and prop something against them. I can't easily shift from lying on one side to lying on my back to lying on the other side. I just can’t get comfortable. This is where Bob comes in.

After watching a particularly absurd commercial, it occurred to me that one of his products might render my time in bed much more enjoyable (okay, my adolescent readers, let's pause right here so that you can get your get your giggles out of the way). The product is called the Power Bob bed. The Power Bob can automatically raise and lower your head and feet. You can get this bed in king-size such that each half of the bed, mine and Kim’s, can be operated independently. The Power Bob gives you most of the benefits of a hospital bed, without the loneliness.

So we bought the Power Bob, at a price well below that of the national brands, and set it up in our bedroom. Wow, what a wonderful investment!

I make use of the Power Bob in two primary ways. For the first time in years, I can go to bed early or stay in bed late and enjoy television or reading, by raising the upper half of my body using the power Bob.

Also, if at any point during the night I start to get uncomfortable from lying in one position too long, I can raise my feet a couple of inches, or my head a couple of inches, and that seems to help. The Power Bob is doing for me in bed what a wheelchair does for me out of bed. It gives me a little mobility, and a little mobility is a good thing.

Kim loves the new bed too. It's so much more comfortable for her to sit up using the Power Bob than to prop herself up using a pile of pillows behind her head. Maybe everyone should have a Power Bob. If I ever run for public office perhaps I’ll borrow from the Herbert Hoover campaign slogan: "A chicken in every pot and a Power Bob in every bedroom!"

CCSVI - Round Two: The Details

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?

Not a Cure, But Very Cool Technology

I’m awaiting some feedback from Dr. Siskin before I post images and other details about my March 16 CCSVI procedure.  In the meantime, please consider the video below, which demonstrates an amazing technological advance that may help disabled people while we wait for real cures. 

CCSVI - Round Two: After the Procedure

“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.

CCSVI - Round Two: Treatment Day

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…

CCSVI - Round Two: The Day Before the Procedure

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.

CCSVI Treatment - Let’s Give This One More Try

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!

Which Would You Rather Have? Round Three – Progressive Disability Versus Ignorant Asshole Social Syndrome (IASS)

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Last year I posted my first two rounds of the "Which Would You Rather Have" discussions. I compared progressive disability to sudden disability and to cancer.

Progressive disability is what I have. My particular version is called Primary Progressive Multiple Sclerosis (PPMS). I was diagnosed 9 years ago with the slightest limp. Now I spend all day in a wheelchair. I know some advanced MS patients who long for the days when they could sit in a wheelchair for hours on end.

There are ignorant people. We can argue about how much is due to nature, and how much to nurture, but it doesn’t really matter in the end. Ignorant people can’t comprehend how the world works, and have trouble grasping complex notions. They adopt overly simplistic or purely erroneous models, and they don’t seem to mind. But many ignorant people overcome their impairment by being decent. They may not appreciate the difference between circumference and radius, but they know good from bad, and strive to improve the lives of those around them. I am often frustrated by these people, but that speaks more to a deficiency (of patience and understanding) in me rather than in them. All things considered, I think I’d rather be a decent, ignorant person than have a progressive disability.

And there are assholes. These people simply don’t treat others with respect. They can be demeaning, dismissive, and rude. But not all assholes are necessarily bad people. Many are driven individuals who contribute to the greater good. Most CEO’s, countless brilliant scientists, and more than a few physicians I know are productive assholes. So I guess I’d rather be a productive asshole than have a progressive disability.

Then there are the ignorant assholes. They are the worst. The combination is synergistic. Ignorant assholes are wrong about things, and are obnoxious about being wrong. They do not contribute to society. In fact, the rest of us spend much of our time and resources undoing the damage inflicted by ignorant assholes. So, if I was magically starting over, and was given the choice of living a life that would include progressive disability or living a life as an ignorant, healthy asshole, then for the benefit of both society and my personal well-being, I’d say, “I’ll take the MS please.”

I must have some specific ignorant assholes in mind, right?  There are so many to choose from, but it’s hard to find a more appropriate example of IASS than the pastor and congregation of the Westboro Baptist Church of Topeka, Kansas, pictured above.  I challenge you to top that one, without choosing a politician (that’s just too easy).