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: Did It Work?

How do I feel now?

I feel exactly the same as I did before the CCSVI treatment. In fact, I felt completely “normal” within a few hours of the procedure. No side effects. No improvements.

This double edged sword is all too familiar to me. I've undergone so many treatments, and have ingested and infused countless drugs over the years. On the one hand I rarely suffer any of the side effects. On the other hand I never experience any of the benefits.

Did it work? How can I tell? When can I tell?

I don't know yet if this round of CCSVI treatment worked. I’ve always said that for my particular type of MS it may take up to six months to determine the success or failure of the treatment. My primary goal is to slow down or stop the progression of MS, and it just takes time to figure out whether or not that has happened. The damage already done to my central nervous system is not going to heal overnight, if ever.

Was it worth it?

Given that I had no other treatment alternatives, and given that the speed of my disease progression does not afford me the luxury of being patient, and given that venous angioplasty is relatively safe and painless, yes, it was worth a try, even if I never see any benefit from this procedure. It is satisfying to do something, to throw a punch in the fight, to go down swinging if I must go down.

Then again, it could turn out to be the best decision of my life (other than marrying Kim or outrunning those cops in ‘84). I just can't tell yet.

Will I ever do it again?

Possibly. Probably not. I don’t know, maybe.

I might go back for more if I want to try to improve blood flow through my left internal jugular vein, which has a muscle impinging on it from the outside. There is no clear treatment protocol for this condition. Placing a stent inside the vein is one option, but it's not a great option. We can't know how the stent would react to the pressure from the adjacent muscle bundle. Would it keep the vein open? Would it collapse or fracture and make the situation even worse? You might ask though, what could be worse than almost no flow through a vein?

I also have to consider the possibility that perhaps my MS isn't associated with poor blood flow out of my central nervous system at all. I've tried CCSVI treatment twice now. I'm considering a third, more elaborate and risky treatment. When in this process do I stop chasing something that might not be there for me? I don't know. I need to think about that some more.

Of course these decisions are made in the context of my unrelenting decline. If I wait too long to make decisions, or if I wait for the science to be completely vetted before proceeding, then I will incur significant, permanent neurological damage in the interim. This drives me to be aggressive in my decision-making, and compels me to adopt strategies that others might consider risky, desperate, or otherwise ill-advised. But time is not on my side, and my options are few.

Final Thoughts

What I've been through, and what I'm sharing with you here, is not a testimony one way or another about the theory of CCSVI. Rather, this is simply a rendering of my personal narrative. Mine is only one of thousands of CCSVI stories, and the fact that I am sharing it with you here is not meant to imply that it is more important, representative, or valuable than anyone else's story. It’s just that I have this blog, and lacking enough insight or imagination to do otherwise, I keep writing about myself. 

Yet when I examine the entire body of (mostly anecdotal) evidence regarding CCSVI and MS, I am encouraged.  I hope that CCSVI treatment continues to be a life-changing experience for many MS patients. 

I am moved by the outpouring of love and support I continue to receive from my friends, loved ones, and the online MS community. I can’t thank you enough. I'll update this blog from time to time, regarding my CCSVI experience, but don't look for any YouTube videos of me doing jumping jacks.

Despite the uncertainty of my future, I’m doing okay.  I’m rarely able to sleep late in the morning, not because I have urgent matters to attend to, but because I simply can't wait to get up and start my day.  Life enchants me.
 

To read the other five blog posts about my March, 2011 CCSVI treatment, click here and scroll down.

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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?