By:Duncan Thorton
You don't get many perfect moments like this in your life, so it's important to enjoy them.
Like anybody with Multiple Sclerosis, I have a neurologist, and he and I
have some differences of opinion. For example, I think that if the veins
in my neck are obstructed, it would be better to have them opened.
Whereas my neurologist not only doesn't believe that MS patients are
likely to have obstructions in these veins, he doesn’t believe it would
matter if they did. He also doesn’t believe that in Canada you should
even be allowed to find out if the veins in your neck are obstructed, or that any vascular surgeon should be allowed to open them if you do.
(In Canada, if you don’t have MS, these decisions about treating your veins
would be made between you and your vascular surgeon or interventional
radiologist. But if you do have MS, somehow your neurologist gets a
veto.)
The observations about the veins (the condition is called CCSVI - Chronic
Cerebral-Spinal Venous Insufficiency) come from the work of an Italian
vascular surgeon named Paolo Zamboni, who found that people with MS
usually have obstructions of some kind in their jugular or azygous veins
(“the veins that drain the brain”). Zamboni then thought it would be
good to find out what happened if you opened those veins up using the
same ballooning technique used to open clogged arteries in the heart. It
turned out that most of the 65 or so patients treated in this
preliminary study did well. (It was published in The Journal of Vascular Surgery; you can read it here.) That's a small number of course, but most of the thousands of MS patients around the world who have been treated this way since have done well too.
Most have reported at least some relief of their "minor" MS symptoms like
cold hands and feet, mental exhaustion, and fatigue. (For many MS
patients - including me - fatigue, is actually the most disabling
symptom.) Maybe about a third have also had dramatic benefits in more
obviously “neurological” aspects of the MS. They can walk better, speak
more clearly, type once more with all ten fingers.
My neurologist believes those results all placebo, but so far, almost
no MS patients whose veins have remained open following treatment show
signs of disease progression - which is pretty good, considering one of
the main characteristics of MS is that it progresses.
If you don't recall, MS is usually thought of as an auto-immune disease
where (for no good reason) the body attacks the myelin that surrounds
nerve cells in the brain and upper spinal cord. The attacks leaves
lesions on the brain - that where the name multiple sclerosis, which
means means "many scars," comes from. No one knows why MS only attacks
nerve cells where it does instead of all over the body, no one knows why
it starts or why it seems to go away and then relapse in the early
years (in later years it just creeps along steadily), and no one knows
what it will do next. But the one thing most neurologists - all of whom
were brought up on the autoimmune hypothesis - seem sure of is that it
can’t have anything to do with blood flow in your brain.
Along with simple impairment in walking, standing, and coordination, symptoms
can include numbness, speech impairment, bladder control problems, and
blindness. Many people with MS lead long, happy lives, but about half
will die of something related to MS if not the disease itself. It’s
common for patients to develop difficulty swallowing later in the
disease process, so choking is a common way to go. Dementia starts to
show up too. Maybe not surprisingly, one of the related risks is
suicide.
"Remember," a friend of mine was told by her neurologist, "you don't own MS. MS owns you."
So, screw that, I thought, and with my brother (who also has MS) I
travelled to Poland where vascular surgeons are allowed to test for and
treat blocked veins even if you have MS. That meant paying for
it myself, something which, as a Canadian I’m not used to ($10,000,
raised with the help of family and friends) and having to work out
issues of aftercare on my own.
I’ve had MS for more than 20 years, but my case is still not “advanced”;
I’ve never needed even a cane to walk, for example. But for me the
results were still dramatic. By the time I returned from the operating
theatre my hands and feet were warm, and my voice, which had become thin
like an old man’s, was annoyingly loud again. The next day we walked
around the city for hours and worked and socialized into the night. We
did the same the day after that. And so it has gone in the seven or
eight months since. I’m not superhuman (my wife merely calls me the “Ten
Thousand Dollar Man”) but for the first time in more than 20 years, I
am nearly normal.
When I saw my neurologist following my trip to Poland, I found another
difference of opinion: I thought that, if I was going to have a special
doctor for my MS, he might at least be interested in tracking any short-
and long-term effects, especially since I was the first person in our
province to have had treatment for CCSVI. Or interested in looking the
images of my blocked veins before the treatment, or in reviewing the
video of them being ballooned. But it turns out no one is interested in
looking at evidence of something they already know is impossible.
I already knew my neurologist was skeptical, of course; he has spoken
about Zamboni’s ideas publicly more than once. So when I first saw him
after my CCSVI procedure, I asked him if he remembered saying that one
reason to be cautious and skeptical about the results in the Zamboni
study was that almost half of those first 65 patients whose veins had
been ballooned back into shape had a relapse of their MS during the
following 18-months anyway.
“Yes,” he said, “that’s a good reason to be cautious and skeptical.
Then I asked if he remembered saying you should also be cautious and
skeptical about Zamboni’s work because almost half of the patients had
had their veins close up again anyway.
“Yes,” he said, “that’s another good reason.”
I said, “But those were the same patients.”
He blinked, and I explained that in the Zamboni study, the only patients
who suffered relapses were those whose veins had closed up again. None
of the patients whose veins remained open had a relapse. I usually don’t
speak in exclamation marks, but I did then: “So, those two things might
be reasons for caution separately, but taken together they were
actually the most important and exciting finding!”
Understand why this would be exciting: MS attacks the brain. There is no cure. It
is a progressive disease. And so far the best treatments might reduce
the number of acute attacks that an MS patient in the early stages of the disease suffers by about 30%.
But my neurologist said, “Well, Duncan, that would be the most important and exciting finding, and Dr. Zamboni might be saying that now, but he didn’t put that in his paper.” Which to say, he
thought Zamboni was very likely a charlatan, and that while he might be
making that claim to get attention now, he obviously hadn't had enough
actual evidence to submit a claim like that to a peer-reviewed journal.
Which would have been like having a very cold cup of pee poured over me and
my silly ideas, except that this was my Great Moment: “Actually, I have a
copy of his paper right here,” I said.
And I pulled it out and showed him the two places in the paper where it is
laid out that none of those who veins remained open had a relapse. Just
in case any reader might miss it, on the last page this information is
introduced with the words, “It is of great interest and should be
emphasized that…”
But then - and here it was almost as if he didn’t want to discuss whether you should actually read a scientific paper before
you dismiss it in public - he changed the subject and we started to
argue about whether I even had the right to find out if my veins were
occluded and then I had to leave and my great moment fizzled out like a
wet puncture.
http://open.salon.com/blog/duncanthornton/2010/11/10/great_moments_in_science_i