Living the Experience

Here we feature CCSVI diagnosis and treatment experiences from the perspective of the patient, and also from a first-hand observer such as a close friend or family member. Not all CCSVI treatment stories result in (immediate) success for patients, and we share those accounts as well.

Randall's Patient Perspective
Randall's Companion Perspective: Lani



Randall's Patient Persepctive

I was diagnosed with Multiple Sclerosis in December of 2005. All that year my body had been doing and feeling things that were not normal. It started with a numb left hand which was chalked up to carpal tunnel syndrome. I soon discovered that it wasn’t. By January of 2006 I was injecting myself with interferon three times per week in the hope that it would slow my MS down. I still had about one relapse per year. By the fall of 2009 both of my hands were numb and tingly. The usual list of bladder-related MS symptoms was present. The bottoms of my feet and my ankles went numb. My balance had deteriorated significantly, and my legs had become unsteady enough that in August of 2009 I bought a “fashionable” cane to keep me upright. The cane was a big deal for me because it meant that my MS was no longer a secret.

Then, on the evening of December 18th, 2009, I opened an email from an old friend with the subject line, “Have You Seen This?” As I watched the 20 minute story from the Canadian news show, W5, I went through emotions in rapid succession. Zamboni, CCSVI, angioplasty…the exposé chipped away at my incredulity, and tears started welling up in my eyes. I watched through tears as a middle aged Italian man who had been treated under Zamboni’s study said in Italian, “I can’t remember what it feels like to be sick anymore.”

I fought against the urge to believe. Hope had become a stranger to me, and I was afraid to let it in. Within a few days I fired off an email to my neurologist at our local university hospital. What did he think? His response came as a form letter. It described the “Liberation Therapy” as, “an expensive and potentially dangerous and unproven treatment.” I was undeterred. I tried to get diagnosed locally. I managed to get a CT scan but the grainy images seemed to indicate that my jugulars were fine. “But what about my azygos vein?” I thought. I started to dialog with an interventional radiologist at the same hospital who eventually advised me to look elsewhere, as the theory was just too controversial.

I took my frustration to the internet and found ThisIsMS.com. I read all I could. Whenever there was a whisper or rumor of treatment I was on the phone getting my name on some list that was who-knows-how long: Buffalo, Dr. Dake, Dr. Mehta, and Dr. Sclafani. But all were waiting for IRB approval before they could treat. I devoured the stories of others who had traveled to Poland, Bulgaria, and elsewhere. It felt like nothing was happening in the US. Nothing was moving, and my MS was getting worse. My latest symptom was fatigue in my lower body- a drained, rubber-legged, out of breath feeling that would only allow me to work with my legs for 10 minutes at a time without resting.

Then one Monday morning in May someone posted a link to the Community Care Clinic in Albany, NY. Their website sported an entire page on CCSVI. They were offering diagnosis and treatment and a phone number. I called and choked back tears as I left my information with a nurse and waited for a doctor to call me. The next Sunday he called while we were at church. I felt like Publishers Clearinghouse had paid me a visit, and I wasn’t home. Dr. Siskin called back at around 7pm (10pm his time). He asked me about my MS symptoms and listened as I explained. They had already treated about 15 MS patients, and there were about 100 more in front of me. He estimated that it might be two months. One month later I stopped injecting Rebif.

After the longest two months of my life I found myself lying on a table at the Albany Medical Center with a 22 gauge IV in the back of my hand delivering a conscious sedation drug. As a result of the medication, I don’t remember much about the actual procedure except Dr. Siskin asking me to take a deep breath a couple of times and asking his assistant for a balloon. The procedure itself took about 2 hours. It took another hour for me to come out of the conscious sedation. Dr. Siskin explained that they had found and fixed “significant stenosis” in my azygos vein. The whole thing seemed like 15 minutes to me. I had walked into the hospital using a cane for balance. Four hours later I was walking out of the hospital without it; my balance was that much better.



In the days and weeks following my procedure all of my symptoms changed. Many of them have all but disappeared. As I mentioned, the first symptom to improve was my balance. I wasn’t ready to join the ballet, but I had my footing for the first time in several years. My stride was longer. The stiffness in my toes, knees, hips, and fingers was much better. Before, I felt like a tin man that had been left out in the rain, but now I had been given a good oiling, and the rust was flaking away. My fingers were still numb, but the stiffness and constant tingling sensation had ceased. All of my bladder-related MS symptoms began to improve. Urgency, hesitancy, dribbling all were gone within two months.

At three months I rediscovered my ankles. Instead of a jarring flat-footed step off of a curb or stair, I found myself extending my toes for the first time in a long while. The fatigue in my legs has gotten much better too, so much so that I was able to work on the house and yard again: moving furniture, replacing molding, trimming hedges, raking leaves. These are chores I had long ago abandoned for lack of energy (and balance).

It has been six months since my “liberation.” I am certainly not back to where I was before my diagnosis, but I feel like I am inching closer every day. Some days I stop to remember how I used to feel, and I marvel at how much better I am. My MS is slowly fading away and becoming a memory. I am gradually rediscovering those things I lost because of it. I don’t know if I will eventually recover everything, but from what I have regained so far I know that MS was merely a symptom, damage caused by the real culprit: CCSVI.

Randall's Companion Perspective: Lani

“Traditions, traditions. Without our traditions, our lives would be as shaky as…as…a fiddler on the roof!” ~ Tevye from “Fiddler on the Roof”

I became a nurse because of my desire to serve and heal others. My husband had not been diagnosed with Multiple Sclerosis (MS) yet, and I had visions of international travel - Florence Nightingale danced through my head. By Christmas 2005, Randall’s illness was determined and I realized that world travel would be difficult with this disease (unpredictable progression, imbalance, carrying injectables, few handicapped access areas). Although I possessed basic pathophysiology about MS, I was completely ignorant about the burden of this ailment on my husband, my family, and me. Navigating crowded areas like restaurants and church became a gauntlet. My husband would run into a serving tray, stumble on a person, fall up or down stairs, or trip at the movie theater. He was constantly vigilant of his surroundings and worried about perceptions that he may be inebriated. He was fatigued and often demoralized. At this time last year he had started using a cane, and we felt the weight of this progressive, degenerative disease.

When I first heard about CCSVI, I was both hopeful and skeptical. Venoplasty is considered safe and is performed routinely. The procedure is not difficult and is a “bread and butter” intervention. However, I did not want my husband to undergo an unnecessary operation. I read as many studies as I could find while my husband fervently tried to find a doctor who would be willing to image and treat. I was moved by Dr. Zamboni’s and Dr. Hubbard’s personal brushes with MS and their ethical motivations. I finally concluded that our family had little to lose in trying venoplasty, but much to possibly gain. His slide into disability had already begun.

As you can read in Randall’s story, the results have been encouraging, and I remain cautiously optimistic. I am still waiting for a relapse or things to change, but the last six months have been almost disorienting in their reversal of ongoing symptoms. I am saddened by the vehement opponents to CCSVI. Much of the medical community is steadfastly holding onto tradition and defending territory. They have lost sight of the millions of MS sufferers who daily, monthly lose part of themselves to this disease. It is always embarrassing and shameful to read about past instances in medicine where traditions were defended despite patient beneficence (Dr. Joseph Lister and handwashing, Dr. Bradley and birthing with your partner, Dr. Barry Marshall and H. Pylori, etc.). I wonder how history will look back at Dr. Zamboni and his proponents. For me, I can only applaud this intervention and how it has blessed us. Truly, it took defying tradition to bring back balance to our house.