The Cost of Liberation: Memoir

By Ingeborg Boyens

If you are at all like me, a year ago “CCSVI” was just one more silly acronym that might have been wielded by texting fourteen-year-olds. Perhaps it was an abbreviation for “cute critters seem very innocent” or something like that. In fact, as many of us now know, CCSVI stands for chronic cerebrospinal venous insufficiency – a term designed to sound extra serious by  physicians who dared to put forward a medical theory that runs counter to conventional wisdom. For me, and some 75,000 other Canadians who have multiple sclerosis, CCSVI became a synonym for hope.

I’ve had MS for more than 20 years. It’s been an unwelcome visitor for nearly half of my life, effectively rubbing out all memories of what it is like to run, dance or move gracefully. Multiple sclerosis is a chronic disease that typically strikes young people – most often women – in their early adult years. It brings with it a buffet of symptoms – numbness, fatigue, balance problems, speech impediments, bladder and bowel control issues, optic neuritis, and pain. No one knows what causes MS and there is no cure.

Canada has one of the highest per capita rates of MS in the world — 240 people in 100,000 have the condition. Everyone in Canada knows someone who has been touched by MS – we’re the ones who look drunk without the pleasure of the drink.

Twenty years have given me a lot of time to try a wide range of coping strategies. There is the stuff of daily life: I find myself leaning – hopefully nonchalantly – on any wall I find. I lock my knees and stand with feet far apart like some U.S. marshal – except in my case I’m after some stability in case a slight breeze or the brush of a butterfly’s wings threatens to topple me. And you won’t see me drinking endless cups of coffee, unless I really like the bathroom.

I accept that MS is incurable, but I’ve tried “healing” schemes from around the world – frightfully expensive drugs with elusive benefits from Western medicine, Reike, qigong, and acupuncture from the East, all washed down by alternative therapies like low-dose naltrexone, diet adjustments, daily handfuls of supplements, exercise, meditation, and  self-hypnosis. And at the same time, I’ve tried to nurture that glass-is-half-full positive attitude that everyone from Oprah to Deepak Chopra recommends. I’ve tried it all. No, that’s not right. I stopped short of bee sting therapy and having the dentist dig out my mercury amalgam fillings.

With every new attempt at easing my symptoms, l would find myself fanning the tiny glimmer of hope that still, inexplicably, resides deep inside. And every time, the embers would once again grow dull and cold.

All the positive thinking in the world cannot erase the fact that MS is a progressive disease, worsening over time.  Every year’s calendar is marked by stark reminders of an ever-changing condition. Every birthday, every holiday, every season, serves as a depressing accounting of personal loss. For me, spring marks not just the awakening of the world after a long Canadian winter. It’s a reminder that last spring, unlike this one, I was able to walk – in a fashion – to the garden. And two springs ago, I was able to stand and lever a spade into the warming soil.

Progression means I personify the pop psychologist’s mantra. I live in the “now,” because it’s too bittersweet to remember what I could do in the past and the future with its constant progressions is too scary to contemplate.

Having a chronic disease is normally an isolating experience, an individual struggle with a private demon. But CCSVI has changed that. It has provoked a huge public debate marked by outrageous declarations, vitriolic positions, and high emotions. Thanks to the Internet, a whole army of MS patients has been mobilized to do war with medical and political establishments. It seems everyone has an opinion on what role the individual and the health care system should play. Any idea I might have had that I have a private, hidden disease is gone. Today, even casual acquaintances have no hesitation asking, “Are you going to get that procedure? Are you going to get liberated?”

CCSVI began with Italian vascular surgeon and medical researcher Paolo Zamboni, who had to work doubly hard to be taken seriously in North America. After all, he had a very Euro style with a scarf and he was saddled with a name that would raise a snicker in our hockey-obsessed culture. Zamboni revealed to the press in November 2009 that he had found a strong connection between MS and abnormally constricted veins in the neck. He theorized that blood trying to get to the heart was blocked. It backed up, leaving iron deposits in the brain which in turn led to the lesions on nerves that epitomize multiple sclerosis. And he found that a relatively simple procedure of threading the blocked vein with a balloon, much like angioplasty in arteries, would ease symptoms for many MS patients. He called it “liberation.”

This should simply have been a good news story. However, when Zamboni proposed that MS might be a vascular problem and not an autoimmune condition, he challenged conventional thinking. The vascular theory had been suggested a hundred years ago but for a good fifty years, MS was the fiefdom of neurologists who argued that MS was an autoimmune disease where the body itself attacks the myelin sheath that protects nerves. This time, there was an onslaught of protests from the medical establishment that Zamboni’s findings were not scientifically proven, nor easily replicated. The Canadian government sided with the status quo, announcing it would not permit any procedures on Canadian soil and would not pay to allow any Canadian patients to travel outside the country for the procedure.

The MS community in turn was impatient with what it saw as foot dragging by the medical establishment and political powers. The first brave souls, many of them Canadian, made the trip to Katowice, Poland or Alexandria, Egypt where physicians were prepared to try the procedure on people who were willing to pay.

Stories of miracles were soon bouncing around the Internet. There were accounts of people using a cane to walk into a clinic, but leaving without. People spoke of feeling a flush of energy coming over them even as they lay on the procedure table. One patient declared months after the procedure, “I have no MS symptoms.” These sorts of glowing online testimonials morphed into blogs, Facebook pages, and websites. Social networking was the staging area for this 21^st century health care battle.

By the end of 2010, there were interventional radiologists and vascular surgeons at clinics across the USA, in Mexico, and Costa Rica performing the new treatment. An estimated 10,000 Canadians had travelled to other countries, paying between $10,000 to $15,000 each for the procedure. Socials, bake-sales, fund-raising raffles became the latest indignity MS patients were driven to.

Years in the journalism racket have made me cautious and careful. But I have to admit it was heady stuff watching “before” videos on the computer of people who wobbled wildly in the all familiar effort to raise a foot onto a step and then the same people “after” an angioplasty procedure step onto a box effortlessly and gracefully. I stepped with them and found the ember of hope inside me stoked to a warm glow. Could I wait for the Canadian government to rule on whether the procedure was safe and effective?

By the fall of 2010, CCSVI had sparked a raging debate that was difficult for me and others afflicted with MS to navigate. On one hand we were told, all MS patients had blocked veins. “No,” said the other side, studies showed just over half of MS patients had constrictions and normal people did too. Typically polite physicians veered into vitriol, sputtering that those who promoted the angioplasty treatment were nothing more than snake oil salesmen. And they dismissed any anecdotal accounts of improvements as not real – it was just the “placebo effect” at work, they said. Social networking on the Internet, on the other hand, fuelled the conspiracy theories saying the medical establishment was in the pocket of the pharmaceutical industry, afraid to embrace a non-drug solution. I felt like I was in a raft bobbing on a turbulent sea, unsure which direction to pull. Every new story of individual improvements sent me to the top of the wave; every new assertion that there was no scientific proof sent me to the emotional trough.

When a medical scanning service just south of the U.S. border announced it had acquired the Doppler Ultrasound equipment needed to check for CCSVI, I thought I should go for the test. A tiny first step. I understood that ultrasound machines are sometimes unreliable and can be wildly inaccurate if the people operating them aren`t well trained. But I hoped a scan of my neck would prove I had blockages so severe that I simply had to get my veins cleaned out. And if not that, at the very least a friend and I could enjoy a cross-border shopping experience.

I must have been the freshly-trained technician`s first or second scan. His forehead was knitted in concentration as he passed a pen-like wand over the geography of my neck. There were unfortunately no little exclamations of “Wow! Is that ever blocked.” Instead, I was told I would have to wait for the DVD of my scan to be interpreted by a couple of doctors. I have no idea if the unnamed physician in North Dakota or the other one in India were familiar with these scans of jugular veins… or any good at reading them. All I know is that the results when they arrived in my mailbox one week later were “borderline” showing constrictions in both of my jugular veins and reflux back into my brain, but not enough indicators for a definitive diagnosis of CCSVI according to the protocols first established by Zamboni.

Great. I was back to watching the debate swirl around me, uncertain what I should do.   Every point in this dispute hit a raw nerve in my sense of who I was and how I was to live. My emotions hit bottom when news came of an Ontario man who died after a blood clot formed around a stent that had been placed in his jugular vein by a clinic in Costa Rica. Suddenly. CCSVI didn’t seem so benign.

And yet I continued to read and listen and weigh my options. By late 2010, after falling over one too many times, I decided to “just do it.” Without stents. And somewhere in the US.  I would cash some RRSPs and impose on family. The latest info gave me good odds for improvement. One third of those undergoing the CCSVI angioplasty had miraculous changes; another third had minor advancements; and the last third felt nothing at all or even got worse. Surely the odds for a win were better than what I would see in any lottery draw. It never even occurred to me that I might fall into the third group and see no improvement.

But it was not to be quite so simple. I naively thought I could start the New Year with the ultimate resolution for a new, improved me. I imagined I would start 2011 with that flush of new energy and the sure-footed balance I read about on the Internet. But I discovered there were long wait times for a procedure everywhere. A clinic in Albany, New York, was booking six months down the road. That wouldn’t do.

The wait times could be circumvented by using the services of the suddenly flourishing medical tourism industry by going for a long trip to a foreign country. I know that might work for others, but I felt uncomfortable with the idea of travelling through multiple time zones to end up somewhere where I couldn’t speak the language. And I didn’t feel right about spending thousands of dollars in a developing country like India or Egypt for a procedure the local residents couldn’t afford.

Nor was it easy to comparison shop.  With this new, still experimental procedure, there was next to no information on who had the best track record, how big a balloon should be used, what was the best after-care. Although the Internet was rife with stories of near miraculous improvements, I knew not all procedures ended with amazing benefits. Although I dared not to put words to the thought, I definitely wanted to be part of the “miracle” group.

I managed to get the recommendation of a couple of Canadian doctors working on the periphery of the CCSVI story. They referred me to Dr. Salvatore Sclafani, the former chief of Radiology at a Brooklyn, New York hospital.  He would be the doctor’s doctor. Thanks to Google, I found he had left the hospital after administrators shut down his procedures in the wake of the death of the Ontario man in Costa Rica in the fall. He was all over the Internet, speaking at conferences and answering questions on a general website devoted to MS. He seemed to be in his early 60s… and apparently indefatigable. I emailed him and was told the clinic at which he was working could fit me into a cancellation in just a few weeks.

What ensued was a frantic period on the phone and on the computer trying to deal with flights, hotels and a clinic staff that seemed to change my appointment every day. As my stomach lurched with each new stumbling block, I thought longingly of the easy one-stop-shopping of medical tourism.

What did impress me was the doctor’s evident interest. Sclafani always replied to any email I sent within hours. A miracle in modern healthcare in itself.  I filled out the longest, most detailed questionnaire on my MS symptoms I had ever seen. In Canada, there are questionnaires too, but the most important question always seems to be “what is your health care number?” And no Canadian doctor I’ve ever met reads a completed questionnaire before he walks into the exam room.

So in early February, with the support if not the enthusiasm of my GP and my neurologist, I set off for New York. It was hardly the typical getaway for winter-weary Canadians. (There had already been three snowstorms that winter in the Big Apple. After the last one, when the snow began to melt away they found a body in a car parked on a residential Manhattan street.) My friend and I booked ourselves into the ultra-modern boutique hotel close to Sclafani’s Brooklyn home. (Mandated apparently so the doctor could scoot by at any hour to check on me if need be.) The hotel – all glass – gleamed with an otherworldly blue shimmer at night. Everything in our room was glass – in a tiny nod to decorum, the toilet was shielded by frosted glass.

I was booked for the procedure on Wednesday morning at 9:30 at a clinic in Staten Island. It cost $65 to take a cab to the deep suburbs of the sleepy, very un-New York borough. The clinic where they were to do what the Canadian government called an “experimental” procedure was a non-descript, low-slung building in a leafy residential neighbourhood.  American Access Care had offered dialysis, varicose vein treatments, and interventional radiology procedures for years. The arrival of Sclafani at the beginning of 2011 would propel the company into avant-garde medicine.

June and I had just arrived in a tiny waiting room when Sclafani swept in. “Swept in” is the only way to describe a big man in a long black sheepskin coat, with a Bluetooth in either ear, hoisting a satchel-briefcase overflowing with papers.

I was outfitted in the standard issue hospital gown and deposited in a large consultation space that seemed to have a dizzying number of physicians, technicians and nurses passing through. I felt as if I was the only patient in the clinic. Sclafani went through my questionnaire with me in meticulous detail, arching a bushy eyebrow when I coughed and sputtered on my words (as I am apt to do) and noting in a blunt but droll manner: “You know 17 per cent of MS deaths are caused by asphyxia.” He told me I would always be his patient. There would be more questionnaires in the future and he said I would be part of a paper he intended to write on CCSVI and MS in twenty years.

I was taken into a large operating room with the high-tech machines flanking a garishly lit steel table. I was covered with a patchwork of sterile blue paper cloths with only a discreet square of my groin showing. This is where a catheter would be inserted into my femoral vein and threaded up to my neck. Everyone around me was dressed in the full surgical gear, only eyes and glasses visible.

I was given mild sedation… not so much that I couldn`t follow occasional instructions to “breathe” or “exhale.” The doctors applied a local anaesthetic to my groin, but I felt grateful when a nurse took hold of my hand as they inserted a sheath into my vein. I concentrated on taking deep breaths from the tip of my toes to the crown of my head. Beyond the pain of that initial push, I couldn’t feel the plastic tube wend its way through my heart up to my neck or feel the squirt of contrast dye shot up my jugular veins. I did hear a “pop” on the left side of my neck. I would later learn this was the sound of the force of a balloon virtually blasting open the narrowing on my left jugular vein. When the balloon was directed to my right jugular vein, which was more severely constricted, I felt a sharp pain. But it didn’t last. After a check of my azygos veins, I was done. An hour and a half. The masked and capped faces around me declared with satisfaction that “it was easy.” Hmmm.

The procedure may have been fast and easy, but I was under strict instructions not to move for three hours. I was transferred to a stretcher and wheeled into a recovery room. It seems this “liberation” procedure is all about maintaining a fine balance between blood clotting when it should and not clotting when it shouldn’t. The insertion hole into my vein was supposed to clot and stop the loss of blood. A radiology technician was commissioned to press down on my incision point for fifteen minutes to encourage clotting. But no clots were supposed to form along where the veins had been stretched. In fact, I was to inject a daily blood thinner for three weeks to help keep the blood flowing.

Flat on my back, I couldn’t tell if I had scored the “miracle” hand. Truth was, I didn’t feel much different. There was no flush of energy that others had reported. My feet and hands didn’t feel any warmer. I scanned my body for changes, going deep inside, imagining I was in a fast-moving gush of blood pushing through the once impassable walls of my jugular veins. The blood roared to distant corners of my body. My toes. My cheeks.

The ultimate test came when my three-hour immobilization was over. I swung my bare feet from the stretcher to the cool linoleum floor. I took my first tentative steps. Still wobbly. Darn. I leaned on my familiar cane and stumbled to the locker room where I had left my clothes. Bumping the doorframe with my standard miscalculation. No miracle here.

Sclafani saw my sour expression. I confessed my frustration that I had not been transformed into a nymph.  “It doesn’t work that way,” he said, those expressive eyebrows knitting in concern – or was that disappointment? He told me most patients felt improvements grow over three months.

So there was a new finish line. Fine. I`d work hard to make sure the miracle happened. Physio exercises, good diet, lots of Omega 3.

The next morning while eating breakfast in the hotel room, I looked down and found my normally blue-purple feet were pink. At that moment, Dr. Sclafani called and I was delighted to report on my state of pinkedness. “So soon,” he mused. I took great solace from that comment and felt encouraged that there would be more improvements over the next few months. It was time for me to practise patience – something I am not that good at. Indeed, during the next few weeks I would see more changes in my symptoms. These changes happened so gradually and incrementally that I barely noticed. It took friends to remark that my speech was clearer; how sweet that they never told me before just how slurred my voice had been. The pain that made nights intolerable eased; I halved my pain meds and gave up on the hot bag that had been my night-time ritual for years. On the day I hauled my grocery shopping up the stairs, I thought, “Hmmm. My fatigue is better.” And the cognition fog that usually blanketed my awareness lifted enough that my normally sceptical husband commented that I was “funnier” since my procedure.

But by the second-month anniversary of my “liberation,” I had still not had the dance with my stepmother that I had promised her. Heading into that third month, things began to slide. The chronic body pain came back, spreading like a stain from fingertip to toe. I gave up my stubbornness and embraced my pain meds. My feet were back to their familiar violent purple hue. I can only assume my veins had restenosed or closed in on themselves again. So it seems I spent more than $10,000 to get pinker feet for two months.

By this point, Internet blogs, Facebook comments, and websites were not as enthusiastic as they had been. There were many stories of people whose improvements had not lasted and had gone for a second procedure, or even third or fourth. Now the thinking seemed to be that “liberation” was a temporary fix like Oliver Sacks’ looked-in sleeping sickness patients who had a brief release in Awakenings. Ironically, one good thing was happening: the marketplace was getting competitive with prices coming down and clinics offering services like PayPal accounts.

Even though the CCSVI angioplasty did not transform my life, I was happy I had tried it. At least now I understood the acronym and the hope wrapped up in it. But I would not be scrambling for more procedures in a desperate search for a re-awakening. This time, I would feel at peace with the idea of the Canadian government and the medical establishment researching how the angioplasty works and whom it works on. For now, my dancing will have to in my imagination – my point shoes, my pink ballet crinoline flashing under the light.