A Tale of Two Stents

CCSVIA couple of weeks ago, our friend Hassan felt a tightness in his chest, and then a few other troubling symptoms of cardiovascular disease. In the middle of the night he called for an ambulance, and next day had a stent in place, firmly holding apart the walls of a formerly constricted artery. His heart had also been thoroughly examined and he went home not just feeling much better, but assured there was no lasting damage. Angioplasties have been performed regularly for over fifteen years, and since 2001 at a rate of over two million per year. The risks and benefits are well known.

A catheter inserted through the groin is used to transport imaging dye, a movie camera, a balloon and the stent up to the heart. This being Canada, Hassan wasn’t billed on his way out of hospital, though he has been paying income tax all his life which, of course, is what covers the cost. Some Americans think Canadian health care is an abomination, others think it’s admirable. In the end, it’s the nurses, doctors and technology that make the difference; the way they’re organized is just another system. Anyway, we’re about to experience the U.S. system for ourselves, as Canadian health care refuses to give Caroline the treatment she wants.

About a year ago a procedure not unlike Hassan’s was suggested as a possible treatment for multiple sclerosis — but in veins rather than arteries. Venous problems have been associated with MS since 1863, and in 2008 the vascular surgeon Dr. Paolo Zamboni found constricted veins in the necks of MS sufferers, including his wife. Following balloon veinoplasty, opening the veins to blood flow, he reported their conditions improved, and proposed a theory called CCSVI (chronic cerebro-spinal venous insufficiency). It doesn’t account for all symptoms and occurrences of MS, and it’s far from proven, but it is generally considered worthy of study. None of Dr. Zamboni’s patients suffered any ill-effects.

Over the period of 2010, however, the Canadian response has been timid, to say the least. Proposed studies are limited to considering the viability of the theory, and draw the line at testing it on willing patients. Thousands of MS sufferers consider immediate experimental treatment preferable to allowing the disease to progress further, whether or not it works. They’re lining up to travel abroad for expensive treatments with no guarantee. The perception is that veinoplasty carries no greater risk than angioplasty, and certainly less than the long-term effects of existing MS drugs, none of which even pretend to halt disease progression.

Medical authorities in Canada, as well as the MS Society and the Federal Minister of Health Leona Aglukkaq, have responded with great reluctance to the demand for accelerated studies, or even follow-up for those who undergo the treatment abroad. Dr. Mark Freedman, a member of the MS Society’s Medical Advisory Committee, recently described those advocating CCSVI as a “mass hysteria movement based on unfounded facts that has led to no less than a cult.” The medical establishment is also describing the treatment as “dangerous,” pointing to two deaths (one of which was fictitious) following veinoplasty treatments in which stents were used — something Dr. Zamboni categorically rejected. In one case, the stent migrated into the chest and was successfuly removed, despite reports to the contrary; in the other, it became clotted with blood. Artery walls contain muscular tissue that contracts and expands with the pulse, but vein walls are soft and collapse when not filled with blood; their ability to hold stents in place is quite different.

The long and the short of it is that this weekend Caroline and I travel to Albany NY, where she’ll undergo the procedure. Her condition has deteriorated over the last year and she’s hoping this will stop it getting worse. The treatment’s expensive and although common sense dictates that money’s not the issue, cost is an added stress. She’s also adamant that no stents be used, but worries that if scans show the veins closing up they’ll be recommended — she doesn’t want to have to refuse. She also worries about the follow-up that’s required but not available in Canada. We’ll have to travel the four or more hours to Albany, in unpredictable winter conditions, for routine scans and in case we need any sort of ongoing reassurance, examination or explanation.

Finally, we have to leave behind the support system of Caroline’s friends and family, not to mention the familiarity of her doctors and pharmacists, to explore something that, proven or not, is an option she feels is not really an option. She thinks she’d be crazy not to try it. I can only agree. We’ve looked at Zamboni’s theory; clearly, it’s not comprehensive, but thousands of people so far have claimed marked, long-term improvements. Who cares that no one can properly explain it? She’s not naive enough to expect a cure; at best, she hopes it will end or at least reduce the debilitating fatigue that dogs her day after day. At the very least, she hopes disease progression will slow, so she can exercise her balance and strength. As long as she avoids stents, we don’t fear bad outcomes, despite dire warnings from the Canadian medical establishment. If their fears are well-founded, they’ve done a poor job of communicating them. Frankly, they seem more afraid for themselves than for their patients: of losing face, and of compromising their collaboration with pharmaceutical companies.

Their reaction is disappointing to say the least. They’re rightly concerned with the viability of the theory, but their inability to acknowledge the desperation of their own patients, their refusal to fast-track experimental treatment on willing volunteers and, above all, the denial of follow-up treatment to Canadians travelling abroad, is not only uncompassionate but also unprofessional. They’re giving MS sufferers no say in the matter. The system saved Hassan’s life in a weekend, but a whole year after Dr. Zamboni’s announcement of a new treatment for MS, Canadian medical researches are not one step closer to knowing whether it’s viable or not.

MS Ferment

My wife Caroline’s lived with multiple sclerosis (MS) for eighteen years now. Canada has one of the worst MS rates in the world — 240 cases per 100,000 people when 30 cases is already high. A few drug treatments have been introduced over the years, more to the satisfaction of the pharmaceutical companies than of patients. They work a bit, some of the time, for some people, aren’t very pleasant, and are a far cry from being a cure. In fact, much of the medical literature around MS still centers on diagnosing it; even that can take months.

So when Paolo Zamboni, a vascular surgeon working in Ferrara Italy, announced a drug-free MS treatment and wonderful anecdotal cures, the MS world sat up. He reported that he’d found veins in the the necks of many MS patients to be constricted, as a result of which blood was unable to sufficiently drain from the brain. After widening these veins with temporary angioplasty, and sometimes stents (which are left behind), patients announced dramatic relief.  Zamboni called the condition Chronic Cerebrospinal Venous Insufficiency (CCSVI) and suggested that the reflux of blood caused a harmful build-up of iron in the brain, eventually producing lesions and MS symptoms.
This explanation leaves doctors with more questions than answers. For example, is the iron accumulation found by Dr. Zamboni a secondary effect or a cause? The issue of increased iron deposits in inflammatory sites has been under review for the last decade, and still is. Also, a follow-up study in Buffalo found less clear-cut results than those in Italy, including the existence of constricted veins in non-MS sufferers, and the lack of any constriction in a good portion of those with MS.

Many MS patients want the procedure now, feeling they can’t wait another five years while their body advances to a point of no-return. They’re antsy, upset with bureaucracy, foot dragging and doctors afraid of upsetting the pharmaceuticals. They want funding for standardized CCSVI screening and treatment now. Some are flying to Poland, where the procedure is available for $10,000.

So, worldwide, groups like MS Liberation in Canada are organising fundraisers, walks, talks etc. to raise awareness and work together to spur CCSVI testing, treatment and research. There’ll be a walk/protest on Parliament Hill for CCSVI action on Wednesday, May 5, 2010 at 1:00pm – 3:00pm Ottawa. Look here. At least, you can sign this petition to the Canadian Government to Support Zamboni’s Liberation Procedure for MS patients.

Nevertheless, the MS Society (Canada) has freed up funds with alacrity and is inviting proposals for studies ahead of its usual annual deadlines. Successful applicants will be announced in mid-June. Each project grant is worth $200,000. Altogether the society is contributing four to five million dollars for collaborative, multi-institution studies, some of them in conjunction with US researchers.

Doctors are paid to be skeptical, but they must be excited too. After all, if you were a neurologist with about half of your patients suffering from MS, wouldn’t you enjoy being able to give them some good news for once? Still, researchers are firm that clinical trails are best way forward because they:
a) provide appropriate safeguards; including ethical approval & consent
b) provide appropriate protocols for information that flows from the patients’ reponse in a way that provides the answers that will refine both diagnostic and treatment methods.

In 1848, Ryan Fleish related MS to vascular problems. Almost a century later in 1939, when anticoagulants were discovered, they were widely given to MS patients for 20 years — until the first randomized clinical trials established that the treatment was ineffective.

CCSVI also suggests that MS arises from a vascular problem, though in the venous rather than the arterial system. What’s apparent so far is that if the azygos vein is constricted, angioplasty (expanding it from the inside with a balloon) is effective because the vein remains open. If the constriction is in the jugular, however, the vein quickly collapses again. Stents can be inserted, but the procedure is now less straightforward and carries risk: stents sometimes migrate, even into the heart. Research so far also suggests that the procedure is of no benefit to those suffering from primary or secondary progressive MS — only those with the relapse-remitting form of the disease. Caroline’s prognosis is borderline, still relapse-remitting in some ways but progressive in others.

There are also difficulties differentiating the response rate. Evaluating results is difficult since the only way to find out is to ask patients; they’re inclined to find hope in the smallest relief — that’s the placebo effect — so their reports are considered unreliable.

Ever since multiple sclerosis was first named, the disease has caused fear, disability and misery to countless millions of people; in recent years the incidence of the disease has grown rapidly. This possibility of a new treatment is the only slender thread of hope that’s ever been offered, so the overwhelming response is understandable. The down side, of course, is that if it leads nowhere, the fear and misery will be redoubled. Let’s keep our fingers crossed. We talked of going to Poland, but Caroline’s opted to wait for a thorough protocol to emerge, and then see where it leads. One thing’s for sure, if doctors can’t find any constricted veins, there’s nothing to be done anyway. The wait is agonizing.

How Easy is Normal?

Caroline finally go over her MS attack by undergoing a hefty prednisone treatment. She’s avoided it for eighteen years, but finally succumbed — read the fact-sheet on this synthetic hormone, and you’d avoid it too. Still, to her surprise, she liked it.

Doctor Lapierre, her neurologist, smiled wryly. “Everyone likes prednisone.”

Caroline finally go over her MS attack by undergoing a hefty prednisone treatment. She’s avoided it for eighteen years, but finally succumbed — read the fact-sheet on this synthetic hormone, and you’d avoid it too. Still, to her surprise, she liked it.

Doctor Lapierre, her neurologist, smiled wryly. “Everyone likes prednisone.”

The fact is, it made her feel normal. Yes, we blog philosophers raise our eyebrows at the slippery idea of ‘normal,’ and run off on tangents of relativity, but for Caroline it was tangible — she had energy. Guess what she did with it … tidied the garage shelves, organized her desk and took pleasure in the ability to do what the rest of us take for granted.

Now it’s worn off and, once again, her reaction’s not what you’d expect. A resigned shrug of the shoulders—ah well, it was good while it lasted—is not how she feels. In four short weeks her experience of normalcy became, well, normalized, and the return to a symptomatic life has hit her like a ton of bricks.

It’s easy to come up with logical solutions to these dilemmas, especially if you’re not the one suffering from it. Don’t worry darling, you’ll get used to it again — no, I don’t say that; my response is tougher. I bite my lip and remember that her experience is hers alone, that all I can do is sit with her through her sadness and take joy from her depth when she finds ways to cope.

In spite of her fear that this physical affliction is compromising our relationship, it’s her depth that I love above all, and that’s not going away because of the MS. If anything, it just gets deeper. How lucky am I? Also, how lucky are Caroline’s coaching clients? Her work is more than just a living, it’s a passion — something she excels at because of her experience, not in spite of it. We all have our afflictions, but we don’t have to be limited by them.

Here and Now

When I visited my mother in 2006, just after she’d been diagnosed with Alzheimer’s Disease, she was sufficiently aware to see the oncoming, narrowing corridors of consciousness. Here’s what I wrote as I sat and watched her doze:

Dying to be somewhere else
How can I separate
Holding fast to old, new love
Thank God it’s not too late

Your longing eyes are reaching out
Grasping at the rope
With certainties that haunt us all
Wrapped up in death’s warm hope

And I embrace your clarity
Your pain and your despair
I seek them in the wholeness
Of all the years you bear

So if the facts are muddied
And fear constricts your throat
It suggests to us all at last
To end this dance with hope

And therein lies my vanity
While knowing all’s in vain
I work deep in my even keel
And dream my dreams of fame

I shall invent your legacy
Frame emptiness with care
Go hang it on my newest wall
And hope to make it fair

Second Hand Sickness

One morning this week Caroline woke up feeling dizzy and nauseous; she can hardly walk without toppling and barely has the energy to crawl out of bed. She has MS, so we assume it’s caused by one or more of the sclerotic plaques on her brain, brain stem and spinal cord. There’s nothing to do—no medication to take or any point in visiting the neurologist. He’s very kind, but just shrugs. We had a dinner invitation; I called and cancelled. For Caroline and me, this is ‘normal’ or, at least, one variety of it.

Everywhere I go, people stop and ask me how Caroline’s doing. Usually I say a polite, ‘fine, thank you.’ Sometimes I feel they really want to know, and I tell them what’s happening. They all agree on one thing: Caroline’s great—so brave, so inspiring. Some people even ask me how I‘m doing, which is nice. That’s when I appreciate my training as a monk—no, not the esoteric philosophy and cool tantric images but the acceptance that sometimes sooner or later, life brings something unwelcome. Thirty years of mindful reflection has prepped me for reality. Even though the most well-intentioned just don’t want to hear that, the truth is that sometimes—not often—I find Caroline in tears, pondering a slow and ignominious decline.

And then there’s me. When our initial friendship began to wax romantic she urged me to run for my life, lest I end up burdened with an invalid. How fair is it that I get stuck with someone who’s always sick, who can hardly go out and never knows if she’ll be able to do tomorrow what we plan today?

How fair? Well, it’s my choice. I get so much from Caroline; I consider myself a lucky man. That‘s not my problem. However, my sense of helplessness is an issue. When I walk in on one of her rare depressions, I want to fix things, but I can’t. When she’s symptomatic I want to tell her that everything will work out fine, that the symptoms will go away and not come back, but I can’t. All I can do is listen as she explains what the plaques are doing—some of it invisible and weird—and hold her hand. Thank God—or Buddha or someone—I learned to accept, and especially how to listen. I can make meals, help her around the house and do her share of the chores, but she hates that. Nothing gets to her quite like the helplessness. Me too, though mine’s different.

Others assure her that ‘they’—the Hippocratic powers that be, I guess—will find a cure, that we ‘must keep up hope;’ or, they regail us with anecdotes of natural food diets, homeopathic cures and ayurvedic medicine. People are preternaturally unwilling to believe  that sometimes there’s nothing we can do. After countless promises of medical advance—and subsequent disappointment—we’re more sceptical than most, but they‘re inspiring examples of the human spirit; their solutions at least help them deal with our bad news.

The funny thing is, we’re really happy together. We live our restricted existence in the bright light of day, notwithstanding moments of gloom. Caroline bubbles with new ideas and projects; frankly, I have trouble keeping up with her—really, that’s not a platitude. Her sadness is a passing thing, and so’s mine. Life goes on. We recall that the oppression’s a passing mood, and don’t identify with it—not, at least until it ovewhelms us again. It happens. Then we follow its contours until we remember, this is something that’s happening to us. It’s not who we are. For a while it dominates, but then the ball’s back in our court, and we fit the MS in when we have time; it doesn’t control our every situation.

I was born asking awkward questions, and so was Caroline. We’ve both always second-guessed the things that everyone else takes for granted. That’s why we clicked, even though we’d grown very used to no one getting us. Somehow, for some reason, we’d been born under Socrates’ star and just believed that the unexamined life’s not worth living. Once we collided with each other, we found our union a magnet for other souls willing to question common sense and accepted truths. That’s when Quiet Mind Seminars was born. For me, who spent most of my life running from society, it’s a source of society I trust. For Caroline, who started out cripplingly shy (yes, really), it’s a spring board to her New Way Personal Life Coaching and a discovery that she’s got more to offer than she ever imagined.

Each of us took most of our lives to find our predestined professions. Now we’re there. Ahh! I’ve never been happier than with the brave souls who listen to my Quiet Mind Seminars, and Caroline’s perfectly at home, perfectly empowered, and unbelievably empowering as a personal life coach.

Life goes on. Thanks to you all for being part of it; it wouldn’t happen without you.