An important evolution in my approach to CCSVI (chronic cerebrospinal venous insufficiency) occurred last night (April 21) as my wife and I, along with over 100 MS patients, many in wheelchairs, sat in a crowded community centre auditorium in Winnipeg, listening to one man’s message of hope.
Earlier that day, an email arrived at my office, inviting me to a talk sponsored by CCSVI Manitoba. Like similar groups springing up around Canada and the world, the Manitoba chapter was formed by local MS activists who do not want to wait for months or years to be tested and treated for narrowed, and often twisted, neck or chest veins. It's a congenital abnormality that Dr. Paolo Zamboni, an Italian vascular surgeon, believes may be at the root of their disease.
The speaker for the evening was Duncan Thornton, a 47-year-old writer and lecturer at Winnipeg’s Red River College who, along with his brother, recently traveled to Poland at his own expense to undergo assessment and treatment for obstructed neck veins.
While both siblings have MS, Duncan, who had been battling severe fatigue since he was a young man, was definitively diagnosed only last year after the onset of speech and bladder difficulties.
“I don’t know whether I am cured. In truth, I believe I still have MS,” Thornton stated. But of one thing he is absolutely certain: his quality of life has improved immeasurably. After having the so-called liberation procedure a month earlier, his cold extremities and, what he described as “brain fog”, improved immediately. Over the next month, his chronic fatigue all but disappeared and his bladder function returned to normal.
“Four weeks ago, I never could have stood for an hour giving this talk. After five minutes I would have been begging for a chair to sit down,” he told us. It was hard not to be impressed with his new-found stamina.
As he spoke, I wondered: was the immediate improvement in his circulation and brain fuzziness real or just a placebo effect (i.e., if you think a treatment will benefit you, it will)?
But then, a striking medical analogy came to mind.
As a young doctor, I quickly learned the signs and symptoms of congestive heart failure, especially the ice-cold extremities and the patient gasping for air as blood backed up in the veins of the chest and fluid leaked into the lungs, preventing them from supplying oxygen. All of that quickly and dramatically reversed within minutes of administering appropriate medication to help the heart pump the blood more efficiently.
Then, in the same way, does it not make sense that improving blood drainage in the neck veins would quickly improve the level of oxygen in brain tissue, relieve any congestion and enhance the function of nerve cells, including the autonomic fibres that control skin temperature in the extremities?
Irrespective of whether an unblocking procedure is, in any way, effective in reversing or halting the progression of MS, Duncan Thornton is not alone in experiencing a huge improvement in his quality of life. As documented recently on CTV's W5, the same type of benefit was observed by Steve Garvie and many others whose veins have been treated.
Is it any wonder, then, that Canadian MS patients are demanding that they be tested for CCSVI and treated if blocked veins are found? Who among us would feel differently if so afflicted?
Here is my suggestion: let us all agree that, while properly-designed clinical trials are the only way to ultimately answer the important medical and scientific questions surrounding CCSVI and MS, there is also a more basic and overridingly important quality of life issue here that needs to be urgently addressed.
If, as is becoming increasingly evident, symptoms such as severe fatigue associated with MS can be effectively relieved by unblocking a vein, why shouldn’t a compassionate publicly-funded health care system pay for it? After all, millions of dollars are spent every day on far less justifiable therapies (inappropriate antibiotic prescriptions immediately come to mind).
So yes, especially given the delay and deficiency in funding Canadian clinical trials of CCSVI, I have reversed my previously-stated belief that diagnosis and treatment of blocked veins should only occur inside such studies.
In taking this position, I have reacquainted myself with the fact that advances in understanding and treating cancer have occurred despite the enrolment of only 1% of patients in clinical trials. Do we withold cancer treatment from the other 99% who are not in a study? Of course not. Then why should MS be different?
One can also make an argument to satisfy bureaucratic bean counters: paying for a venoplasty that may allow people to regain a productive life will save huge amounts of health care dollars currently spent on support services!
The bottom line? Take MS out of the CCSVI equation. Publicly fund the treatment of blocked veins to relieve fatigue and other symptoms that drag down good people like Duncan Thornton and Steve Garvie. Beyond being a matter of human rights, it is absolutely the right thing to do.