CCSVI- Diagnosis and Treatment Log Entry #6

“Life is either a daring adventure or nothing.”  Helen Keller

I can’t recall the precise moment when I decided that CCSVI was a legitimate theory about the root cause of MS. Probably it was in October of 2009. I was influenced, like so many of us are, by my friend the Wheelchair Kamikaze. If he thinks something is legitimate, it usually is. CCSVI really became clear to me when I sat down and spent about 6 hours reading through the TIMS message board. From that point forward, all other theories about treating MS became just so much background noise. Sorry, Big Pharma.

I will relate the rest of my CCSVI diagnosis and treatment story in two parts. This post will address what the experience was like from a patient’s perspective- mine. The second post will go into more detail about what was found in my veins, and exactly how it was treated by Dr. Sclafani, at King’s County Hospital Center in Brooklyn, NY.  Before I publish that second post, I’ll need to run it by Dr. Sclafani for accuracy (see the photo of the good doctor and me at top, with a photo of one of my veins on the monitor).

Although I approached this CCSVI adventure with a mixture of optimism and realism, I didn’t feel any apprehension. After I made the decision to follow this road, I never looked back. I was not confident in the result, but I was convinced that I had no better option.

I’ll pick up the story on Wednesday, St. Patrick’s Day, 2010 (see previous posts for an accounting of the days leading up to my procedure day). Kim and I arrived at the hospital around 11:30, because our new friend, Barbara, was being treated by Dr. Sclafani first. Holly, Dr. Sclafani’s capable assistant escorted us to the surgical intake area, and handed us off to that team. I filled out some paperwork, and we waited and waited. Finally, the surgical nurse came out and led me into the prep area.   

Kim helped me change from my street clothes into some surgical gowns that, well, were only marginally better than being naked. But you soon lose any semblance of modesty while undergoing this procedure, given that the doctors are operating from an access point near your groin.

The nurse started an IV in my arm. She was successful on the second try, which is par for the course for me. The nurses and Kim together transferred me from my wheelchair to a stretcher. Kim was allowed to stay by my side until it was time to move me into the operating room, which happened about 30 minutes after Barbara’s procedure was done.

Once I was in the operating room the nurses and technicians hooked me up to various monitors, and began to prep the area where the catheter would be inserted. When Dr. Sclafani arrived he stopped the show for a minute to conduct some legal, and frankly polite, formalities. He introduced his team and asked me to introduce myself. He asked me why I was there, and what procedure I was expecting to receive. This is a required step in New York to prevent medical errors, like doing brain surgery on a patient with tennis elbow, for example.

After I was given the local anesthesia at the injection point, there was no more pain involved with this procedure. There were, however, some very odd sensations when the catheter was moved around my venous system, when dye was released into my veins, and when balloons were inflated. It was all good though. That was where I wanted to be, and those were the experiences I wanted to have.

Dr. Sclafani first examined my right internal jugular vein. I could actually hear the whoosh sound of the dye as it was released into my vein. By watching the behavior of the dye on a monitor, and by using a tiny ultrasound device from inside the vein, he found stenosis in the right jugular, and ballooned it. He also found very similar stenosis in the left jugular, and ballooned that. Nice symmetry, huh? He identified a problem with a valve in my azygos vein, and ballooned it. He also found issues in both of my vertebral veins but was not able to correct those.

I didn't always feel the catheter moving around in my chest and neck, but once in a while I could sense its location.  But again, these sensations were subtle, and not at all frightening.  I could sometimes feel when the balloon was being expanded, and other times I could not.  When I felt it, it was not a sharp sensation, but rather like a momentary feeling of gas (the burping kind of gas).

Once the procedure was complete, the catheter was removed. A nurse applied significant pressure to the injection site for 20 minutes, and then covered it with a garden variety band-aid. I was then transferred from the operating table to a stretcher, and wheeled off to another room, where I had to lie still for an hour to let the injection site completely heal.

I love my wife dearly, and she was a rock for me the entire week. She really took care of me. I’m blessed to have her. But, when she walked into the recovery room with a sandwich in her hand, I may have shown the sandwich a little more love and appreciation than I did my wife. After all, I’d been fasting for quite a few hours. Sorry honey.

Although we had discussed the possibility of my spending the night in the hospital, I think that Dr. Sclafani is finding this to be generally unnecessary. So we drove back to the hotel, and I enjoyed a comfortable night’s sleep. At about 11:00 on Thursday Kim and I met with Dr. Sclafani to go over the procedure and the images in detail. We were home in Maine by 10:00 Thursday night. What an experience!

Dr. Sclafani’s assistant, Holly, is an amazing woman (picture on right). She is now managing the entire CCSVI patient workload, while still doing her "day job" for Dr. Sclafani.  I’ve received emails and calls from her at some pretty odd hours of the day, which speaks to her dedication to her patients. She knows she is doing important work, and thrives on it.

Each time I met with Dr. Sclafani this week, I became more impressed with him. He cares deeply about his patients, and cares relatively little about what others think of his foray into experimental MS treatment (and I mean this in a good way). The word “maverick” comes to mind. Yet, he is anything but reckless. He’s just the sort of doctor that the CCSVI movement needs.

As soon as I can I will post more details about what was found, and how it was treated.

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?

CCSVI- Diagnosis and Treatment Log Entry #5

Just a short note to let everyone know that today's procedure went well. Dr. Sclafani successfully used angioplasty on both of my jugular veins and my azygos vein. I have a meeting with him tomorrow where I'll get more details on just how severe the stenosis was.

I'm in my hotel room now, and expect to be sleeping in my own bed tomorrow night.

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.

I will blog in more detail later.

CCSVI- Diagnosis and Treatment Log Entry #4

I have a couple of hours to kill before I leave for the hospital this morning for my CCSVI venogram and possible angioplasty, so I thought I’d blog for a few minutes.

I was critical of MRV’s and ultrasounds in my post last night. Let me qualify that a little bit. For someone in my situation, who will be getting the gold standard for CCSVI diagnostic tests later today (venogram), the noninvasive tests I underwent yesterday are relatively unimportant to me.

But we do need to come up with a set of noninvasive tests that are accurate and repeatable, for a couple of reasons. First, administering a venogram to every MS patient in the world would be a tough sell, today anyway. It is an expensive test, and it is somewhat invasive. So we need a screening tool, but it can't be a screening tool that has high false negatives or high false positives. At this point in the early “life” of CCSVI, it takes someone with the experience level of Dr. Zamboni’s team in order to accomplish this. It takes practice. It takes repetitions. Some organizations around the globe are starting to gain this valuable experience, but so many other organizations are just getting started.

Second, we need a noninvasive test in order to examine those patients who have already undergone a CCSVI procedure. Those people will want to have their CCSVI repair evaluated periodically in order to determine if the veins that were opened have closed (re-stenosed). It’s not practical to have those patients submit to an invasive test every six months or year.

So, although I consider the ultrasound and MRV to be imperfect tools at this time, I am not advocating that we discard them. I am advocating that we perfect their use in CCSVI diagnosis.

CCSVI- Diagnosis and Treatment Log Entry #3

The most exciting phrase to hear in science, the one that heralds new discoveries, is not 'Eureka!' (I found it!) but 'That's funny ...'
  - Isaac Asimov

If yesterday showed King’s County Hospital Center at its worst- slow service, confusion, piles and piles of sometimes redundant paperwork- then today revealed the hospital at its best. In one day I had an Ultrasound, MRV, neurological exam, and consultation with Dr. Sclafani (photo below). Everything went off like clockwork.



This is such a learning experience for me, and for all of us. I learned something today which I began to suspect a week or so ago. Noninvasive procedures such as ultrasound and MRV have minimal value, especially when they are being conducted by people without a huge amount of experience in diagnosing CCSVI this way (which is almost everyone), and especially when you plan to undergo a venogram the following day anyway. My ultrasound today probably showed no CCSVI issues, or maybe it did. Who knows? Who cares? Today’s MRV of my jugular veins may have indicated some CCSVI, or maybe it didn’t. Who knows? Who cares? The azygos vein was not scanned at all today, and according to Dr. Zamboni this is the vein most often associated with stenosis in primary progressive MS.

Use of these noninvasive tests are a bit like trying to map the surface of the moon by viewing it through a telescope. The venogram is more like mapping the moon by walking on the surface- with a surveyor’s transit in your hand. Tomorrow, Dr. Sclafani will be walking on the moon for me.

Barbara, who is the other person being treated this week, is first up tomorrow morning. I’ve grown to know Barbara quite well this week. She’s an incredible woman who deserves some sort of relief from MS as much as anyone does. I’ll be rooting for her.

When Barbara is done, it will be my turn. I won’t be able to report out to relatives and close friends until late afternoon or early evening. I may or may not be able to blog about my experience tomorrow night.

Am I nervous? A little. I’m not anxious about the procedure itself. I’m worried that I could be the first MS patient of Dr. Sclafani’s who does not have CCSVI. Lying on that table tomorrow, wide awake, with a catheter wandering around in my venous system, I’ll be thrilled if I hear Dr. Sclafani utter something along the lines of “that’s funny…”

CCSVI- Diagnosis and Treatment Log Entry #2

Today was a day of hurry up and wait.  Nothing accomplished other than paperwork, etc.  Tomorrow should be busy with MRV, Ultrasound, and consults.  It’s late, and today was uneventful, so this post will be short.

Why is it late, you ask?  Well, Kim and I went to dinner in Manhattan with a group that included some MS friends of mine.



Left to right:  Michelle (bestadmom), Marc (Wheelchair Kamikaze), Barbara (Montana), Mitch (Enjoying the Ride)

Oh, and I now have clearance to share Dr. X’s name.  He is the same physician who has already treated Michelle and Marc- Dr. Salvatore Sclafani of the Kings Country Hospital Center in Brooklyn, NY.

I hope to leave a much more detailed post tomorrow, because I’ll be less tired, and, frankly, I should have more to write about.

CCSVI- Diagnosis and Treatment Log Entry #1

(Photo credit: Wikipedia)

As I indicated in my previous post, this is my CCSVI week- diagnosis and hopefully treatment. I plan to update this blog frequently with details of my adventure. This post is installment #1.

My lovely wife and I made the trek from Maine to our hotel room- a 5 hour drive without traffic, bathroom breaks, wrong turns, etc. So, it was about 7 hours total. I have this hotel room reserved for 8 nights, but I’ll be looking for another room tomorrow. I’ve learned over time that the term “wheelchair accessible” is a very subjective one indeed. I’ve traveled a lot in my wheelchair, and this is the smallest “wheelchair accessible” room I’ve ever seen. I can’t even turn my chair around in it. I have to drive in, and back out. I won’t trouble you with a description of how complicated it is for me to use the bathroom.

But we’ll survive one night anyway. The internet access is good, and free, and the place appears clean.

I’ve had about 7 months to think about CCSVI, and today I had about 7 hours to really think about this. Here’s where my mind is now…

There’s a battle going on inside me, other than the battle between MS and my central nervous system, and other than the battle between the anxiety of traveling and the tranquility of my little plastic glass of shiraz. The battle I’m referring to here is between optimism for the events of the coming days, and realism about the prospects.

One part of me has optimistic expectations that this experience could affect my MS in a positive way. I don’t spend much time talking or writing about this part of me. I’m almost ashamed of it. But I must admit that this aspect of my being does exist, because if I didn’t have some level of optimism, I would not have spent hundreds of hours researching this, and I wouldn’t be sitting where I am tonight. This is the emotional, hopeful part of me.

The intellectual part of me is working hard to keep the emotional part of me grounded. My brain keeps telling my heart to guard its expectations. After all, this is an experimental treatment of a condition that is related to MS only theoretically (so far). If I let my hope and my emotions run the show, I could be in for a big disappointment.

So my state of mind is the product of these two warring factions in my head. So far they are fighting to a draw, which is probably a perfect situation from a mental health point of view. A little optimism is good for the soul. A little realism is needed to hedge against the possible negative outcomes.

What are some of the potential outcomes this week?

1. We could find no problems with my veins. Ironically, healthy veins would be a huge disappointment for me. I’d be back to the drawing board in terms of finding a strategy to fight my MS.
2. We could find problems with my veins, but be unable to fix them. This is disappointing, but less so than outcome #1. If I know I have problems, I can continue to research options for repairing them in the future.
3. We could find problems with my veins, and successfully address them surgically. This is the ideal outcome of this week’s work. But even then, there are three possible sub-outcomes (I just made that word up):
   
   1. The repairs could be permanent, and positively affect my MS (best sub-outcome).
   2. The repairs could be temporary, and re-repair would be required later (next best sub-outcome).
   3. The repairs could be permanent, but have no positive effect on my MS (worst sub-outcome).

What keeps my spirits up is that I’ve been wondering and wondering for so many months, and now I’m that much closer to having answers. Answers are good.

Schedule for tomorrow: MRV and then dinner with friends.

CCSVI- It’s My Turn

(Photo credit: The Fayj)

“There are risks and costs to a program of action. But they are far less than the long-range risks and costs of comfortable inaction.”
John F. Kennedy

I've been posting here for a couple of months about a new theory of the root cause of MS, called CCSVI. I’ve spoken to, called, emailed, blogged, private messaged, posted on message boards, Skyped, tweated, and Facebook chatted with so many people. I did all this to gain a better understanding of the relationship between CCSVI and MS, and I did this to find out what my options were for treatment. I am happy to say that the time for talk is over, and the time for action is here.

I met a wonderful group of MS patients who studied CCSVI even more than I did. They put me in touch with a doctor who is forward-thinking enough to start diagnosing and treating MS patients right now. Most of the folks in this group have already been treated for CCSVI. Now, thanks to them, it’s my turn.

On Sunday, my wife and I will be packing up the wheelchair van and driving to a “far away” hospital to spend a week or so with Dr. X, an Interventional Radiologist and Chief of Radiology at a major hospital. On Monday and Tuesday the 15^th and 16^th, I'll be going through some diagnostic activities (MRV and Ultrasound). On Wednesday the 17^th I expect to have a venogram and angioplasty (if warranted) on the veins that drain my central nervous system. No green beer for me on St. Patty’s day this year. I’m not exactly sure when I’ll be home- probably a couple of days later.

Dr. X asked me to keep his identity confidential, so that he is not inundated with requests that he cannot handle at this time. As soon as I am given the okay to disclose his contact information, I will.

Because many of you are interested in what I'll be going through with this experimental treatment, I plan to blog about the details of my experience on a regular basis -- hopefully at least once per day while I am at the “far away” hospital. 

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.

For some basic information about CCSVI, and its potential relationship to MS, please read my previous posts on the subject.

Which Would You Rather Have? Round Two- Progressive Disability versus Cancer

Image via Wikipedia

"If you're going through hell, keep going." ~Winston Churchill

Last week I posed the question- which would you rather have, progressive disability or sudden disability? That post spurred a lot of interest, so here is round two.

First, some introductions:

Progressive disability is what I have. My particular version is called Primary Progressive Multiple Sclerosis (PPMS). I was diagnosed 8 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.

Cancer is an even more nebulous affliction than last week’s sudden disability was. The term “cancer” covers the spectrum from types that rarely kill, such as skin cancer, to types that often kill, such as lung cancer.

What are some of the similarities?

1. With both progressive disability and cancer there is a DAY, a singular moment in time, that is your day of diagnosis. For some patients, with either PPMS or cancer, there are hints or suspicions before diagnosis day. For other patients, it comes as a complete surprise (I was in the former group). Diagnosis renders your life a dichotomy- there is the life you lived before your diagnosis and the life you live after. It’s as if two different beings occupy your body, one at a time, handing off the baton on diagnosis day like track athletes in a relay race.
2. In each case, progressive disability and cancer, soon after diagnosis you are faced with treatment choices, none of which are very appealing or guarantee a positive outcome. In the case of PPMS the choices are either to treat the symptoms only, to try some unproven treatment to slow down the progression, or to do nothing. In the case of cancer the options are usually surgery, chemotherapy, radiation therapy, a combination of all three, or nothing at all.
3. With both progressive disability and cancer you disclose your new reality to family, friends, and often coworkers. Disclosure to those you hold most dear is a gut wrenching experience, where you do your best to put a positive spin on the situation to minimize the drama. They usually see right through you though.

What are some of the differences?

1. PPMS rarely kills- directly and suddenly anyway. In most cases it has the effect of shortening your lifespan by a number of years, but, with some exceptions, it is not in the strictest sense a killing disease. Cancer, on the other hand, always carries with it the cloud of potential death. Depending on the type of cancer, the prognosis ranges anywhere from “most people have a complete recovery from this” to “you need to get your affairs in order.” In summary, with progressive disability death is rarely part of the initial discussion. With cancer, death is usually part of the initial discussion.
2. Cancer is often cured. Cancer can be transient- visiting upon you for some part of your life, and if you survive, leaving you at some later point. People sometimes speak of their cancer in the past tense. PPMS is never cured. Once PPMS visits you, it doesn’t leave. People with PPMS are unable to refer to it in the past tense.
3. Similarly, people with PPMS don’t have the emotional highs and lows associated with cancer. We know we have it. Acceptance comes early. We never deal with the disappointment of hoping that just maybe we beat it, only to learn months or years later that in fact we didn’t. Cancer patients ride more of an emotional roller coaster than progressive disability patients do, at least in this regard.
4. Cancer is common. Everyone knows someone who has had cancer. Most of us have lost loved ones to cancer. Many among us harbor a palpable fear of developing cancer. On the other hand, many people don’t personally know anyone with a progressive disability like PPMS. I didn’t. It’s one of those conditions that few people waste any time dreading.

It is worth noting that unlike the sudden disability versus progressive disability discussion last week, cancer and PPMS are by no means mutually exclusive. One of the fears those of us with a relatively rare disorder like PPMS have is that, on top of our current struggles, we are as likely as anyone to contract some sort of cancer. Doesn’t that sound like a delightful combination?

So, which would you rather have- progressive disability or cancer? My response is a bit of a copout.  I would answer the question with another question.  What kind of cancer are we talking about?

I would choose cancer over PPMS if it was a type that has, oh, a 60% chance or better of survival. I would, however, choose PPMS over cancers with a 40% or higher mortality rate. But that’s just me. And, frankly, that’s just me today. Ask me tomorrow or next year, and I’m likely to give you a different number.

So, which would you rather have- progressive disability or cancer?

Disclaimer: Of course there is no competition here, and certainly no right answer. I’m writing these types of posts to raise awareness of the issues people like me face, based on my personal experiences, and the issues people with other conditions face, based on my limited understanding of their situations. Comments are encouraged. Disappointment, outrage and disgust are discouraged, but understandable.

My MS Story Chapter 31- Handcycling

Despite my illness, and the challenges it presents, I still find moments of supreme joy in life. Sometimes I share these with my lovely wife, my family, friends, or even people I stumble upon in the community. Other times, I’m completely by myself.

I’m a person who thrives on occasional solitude: sitting by the ocean and watching the surface of the water sparkle from the setting sun; positioned on an old woods road, rifle in hand, senses piqued, waiting for a whitetail deer to reveal himself; reclined by the warm fireplace in my home, reading a book that puts into words some truth that had previously eluded me.

My handcycle is one of the best purchases I've ever made.  It has allowed me to enjoy exercise year round (I set it up on a trainer in the winter months). While doing my body some small amount of good, I'm improving the welfare of my mind and soul immeasurably. I feel alive and even temporarily healthy when I propel myself down a road or a path, completely under my own power, alone in my own little world.

When I began using the handcycle I could manage as many as 18 miles on a single ride. If my body had been stable, instead of getting worse due to MS, I'm sure I could've improved to at least marathon distance. But, instead, each successive year I've had to shorten my rides. Last summer I could only manage a couple of miles a day. 

Transferring from the handcycle to my wheelchair at the end of a ride is a feat requiring flexibility, dexterity, and strength- three characteristics I no longer possess. On more than one occasion I’ve ended up flat on my back in the driveway. When that happened it took the combined strength of both Zach and Kim, a bit of my engineering knowledge, some scrap lumber from the shed, and a roll of duct tape to get me propped up into my wheelchair again.

It’s still worth it. With MS, you have to pick your fights. I’m going to fight to maintain my handcycling for as long as I can.

On some of my rides I’ve had the forethought to bring along a camera. Here is a link to some pictures I've taken from my handcycle. (Once you get to the photo album, just click on the first picture to enlarge it, then use the arrow keys above the picture to move through the album).

Come on, spring.  I'm ready.

Which Would You Rather Have? Round One- Progressive Disability versus Sudden Disability

(Photo credit: Wikipedia)

What I'm about to do is crass and uncouth. You may find it so disturbing that you will not only skip over this post but will stop reading my blog altogether. But it's a risk I have to take. I think about this stuff all the time, and I feel compelled to share my thoughts.

So which would you rather have- a progressive disability like Primary Progressive Multiple Sclerosis or a sudden disability like a spinal cord injury?

If you take a snapshot in time, depending on when you press the shutter release button, these two types of disability can appear to be very similar. For example, right now my situation resembles that of a person with an injury in the mid section of the spinal cord, a location where you lose most leg function but maintain a significant portion of your upper body function. If you took that picture two years ago I would have resembled a person with a slipped disk. If you take that picture a year from now, I'll probably resemble a person with a spinal cord injury much higher in his neck.

So here we go...

The advantages of having a progressive disease versus a sudden disability are, in no particular order:

1. If you have a progressive disability for, say, 40 years, then for some number of years you may have enjoyed relatively high function. I did for a few years. Whereas if you have a sudden disability for the same 40 years, you didn’t have any low disability years on the front end.
2. With a progressive disability you have plenty of time to mentally adjust to your situation. Typically at time of diagnosis disability is relatively mild.
3. With a progressive disability you have plenty of time to take tangible steps to adjust. You have time to put ramps in your house. You have time to shop around for mobility aids. You have time to make career changes in order to maintain employment.
4. Your world is not turned completely upside down in a period of seconds with a progressive disease. The trauma is not acute.

The advantages of having a sudden disability are, in no particular order:

1. Oftentimes, once you recover from the disabling event, your situation is somewhat stable. Although the disabling event was extremely unexpected and traumatic, you often get to a point where your level of disability is only slowly increasing or not increasing at all.
2. Because of item 1, when you employ an assistive device it can typically be used for a very long period of time. With a progressive disability, you have to stay ahead of the curve. You don't want to be buying assistive devices today that you should've bought yesterday and that will become inadequate tomorrow.
3. Once you recover from the trauma of the disabling event, both mentally and physically, the uncertainty in your life is much lower than the uncertainty in the life of a person with a progressive disability.

I realize that my characterization of these two conditions does not take into account all possibilities. For example, sometimes progressive conditions advance so rapidly that they look more like a sudden disability. Similarly, sometimes sudden disabilities continue to progress rather than stabilize, and take on some of the characteristics of a progressive disability. But that's not what I'm comparing here. I'm comparing the more classic presentations of the two types of disability.

So, those of you who are still reading, and don’t find this thought exercise completely abhorrent, what do you think? Would you rather know it is coming, and have time to make adjustments, or would you rather rip the Band-Aid off suddenly, so to speak, and perhaps be more stable going forward?

Pick your poison.

Next week…Progressive Disability versus Cancer.


Disclaimer: Of course there is no competition here, and certainly no right answer. I’m writing these types of posts to raise awareness of the issues people like me face, based on my personal experiences, and the issues people with other conditions face, based on my limited understanding of their situations. Comments are encouraged. Disappointment, outrage and disgust are discouraged, but understandable.