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)

Image via Wikipedia

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). 

Spending Decisions

I was unsure how my disability income would be taxed, so I erred on the safe side and had Kim withhold more money from her paycheck than any reasonable person would. As a result, we received a rather large tax refund. We've since adjusted Kim’s withholding, so that we should have only a small refund next year, and each of her paychecks will be a bit larger going forward.

So, what should we do with the refund money: pay off credit card, home equity, or other debt; invest in an IRA; help the kids with college costs; or go on a cruise? Those are all good options, but we had another idea.

As I've mentioned in numerous posts, I probably won’t be able to drive my adapted van much longer. In fact, if we had not taken action last week, I was almost ready to hang up the keys for good.  But the critical problem isn't (yet) with my left hand which operates the adaptive driving controls in the van.  It's that I've become too weak to safely and smoothly accomplish the elaborate dance of transferring from my wheelchair to the driver’s seat (and back).

I've always known that I could have a power driver’s seat installed. Such a seat slides all the way in to the center of the van and rotates 90° so that I can easily transfer from my wheelchair to the driver’s seat, and then push a couple of buttons to place me squarely in the driving position.

I've avoided investing in this seat though, because I thought my left hand would be the reason I would eventually stop driving, and I didn’t want to spend the money unnecessarily. That was the thinking.

It's funny how your perspective changes when facing the imminent loss of something like the ability to drive, especially when you have a wad of cash burning a hole in your pocket. As you may have already surmised, I spent the tax refund on a new power driver’s seat for my accessible minivan (see photo at top). I'll now be able to continue driving until my left hand becomes too weak.

Down the road, will I look back on this purchase as money wasted? I will if I stop driving due to left hand weakness sooner rather than later. But I hope that I’m able to continue driving for a while.  If I’m so fortunate, I’ll consider this an appropriate use of a financial windfall in order to preserve my independence for a while longer. Only time will tell.

Many disabled people don’t have the financial resources to be faced with spending decisions like this, so I'm not complaining. I'm just explaining. When you have a chronic, disabling disease you’re forced to make absurd financial decisions regarding how much to spend on purely temporary efforts to preserve mobility. What price freedom?

When Kim and I were both working and pulling in decent salaries, I didn't hesitate to purchase snowmobiles, ATVs, guns, or other rednecky apparatus. Life is short, right? But now that my financial contribution to the family pool is much smaller, and so is the size of the pool itself, I sometimes feel guilty about spending money on disability equipment which will improve my quality of life (for a while) but that I don't absolutely need. It's just another dilemma- courtesy of my favorite little disease.

As I’ve written here before, although it is unfortunate that I need these assistive devices, the days that I’ve accepted crutches, a scooter, or a wheelchair were actually very good days.  Suddenly, I can do something better than I could do it the day before.  So I’m not regretting that I require a power driver’s seat, but I’m instead celebrating the fact that I’m still driving, and that it’s even a little easier for me today than it was yesterday.  

Oh, and I bought a new camera too, which I can mount on my wheelchair. Check back here for photos and videos.