CCSVI -- why we need more research
Posted: Sun Mar 07, 2010 5:27 am
Here's why I'm excited about CCSVI research.
In my experience, neurologists aren't a particularly optimistic group of people. I've never heard of any of them expressing any possibility of a cure, or even a significant improvement for MS symptoms, let alone the whole disease. The best they currently offer is Tysabri that has better odds of you getting less disabled than the other CRABs. Or they offer drugs that will control some symptoms (and then there's the side effects from those drugs to deal with).
Occasionally over the years, we've heard of "cures", but it turned out that the story was about one person and they could never replicate it.
But CCSVI is different for several reasons.
First, some doctors (not necessarily our traditional neurologists) are finding common structural explanations for MS. MS may indeed be a problem with the immune system, but there's no current way to prove or treat it with that hypothesis. But with CCSVI, the doctors can point to a place on a film (or whatever they're calling the images from the various scans) and say "here is the problem that needs to be fixed". Because CCSVI has been accepted as a congenital condition, at least in some cases, it preceded MS. In other cases, perhaps an injury or other occurrence created a similar blockage, but it's still something concrete that can be identified.
Second, after treatment, doctors are seeing significant improvement of symptoms in patients -- a fairly high percentage of patients, considering how few procedures have been done. I suspect that the doctors have had such a broad range of improvement in so many people that they didn't realize that they would have to quanitfy it, and now they're putting together formalized trials to gather data. That means that, although we patients hate having treatment delayed, we're dealing with doctors who have some hope of actually making us better, unlike the current thinking from our neurologists.
Third, while no treatment works for everyone, CCSVI appears to provide a wide range of benefits to patients. We struggle now in that there is no central registry of data of what those improvements are, how long after surgery did they appear, and how long will they last. But now we have doctors looking to capture that data and perhaps in a year or two (not that we want to wait that long), we will have a much better picture of what results CCSVI is likely to produce. That's still less time than it takes to run trials for a new drug.
Fourth, CCSVI offers the tantalizing hope that the negative aspects of MS and of what we endure while being treated may be markedly reduced -- or in some cases, even eliminated. For me, taking Tysabri is so much better than better than the eight years I spent on Avonex and its weekly side effects. But I still deal with MS symptoms, and that monthly visit to a chemo clinic sure is a bummer. And all that Tysabri does it hold out some hope that I won't get worse -- that's a hard concept to build an upbeat slogan about.
Fifth, CCSVI research suggests that, at least for some patients, in a matter of a couple of weeks, MS could be diagnosed and treated. How many of us have spent years going from one doctor to another with none of them being able to tell what what wrong with us, let alone actually treat it? The idea of getting a prompt, accurate diagnosis -- without all the trauma of procedures like a lumbar puncture -- or being sent to a psychiatrist because a doctor couldn't see a problem, may be a thing of the past.
And sixth, CCSVI can, at least for some, be diagnosed and treated for far less than we now pay for one year's medication that doesn't solve any of our problems. And that still applies even for those who have traveled overseas for treatment!
To have so many doctors (except those jolly neurologists) excited about CCSVI is incredible. And their results are being reproduced in clinics in Italy, Poland and Jordan, not places that Americans think of as sites for cutting-edge technology. In America, our national news media has not run a single story about CCSVI, but in Canada and England, clinics and or studies are cropping up all over.
Am I hopeful? You betcha!
In my experience, neurologists aren't a particularly optimistic group of people. I've never heard of any of them expressing any possibility of a cure, or even a significant improvement for MS symptoms, let alone the whole disease. The best they currently offer is Tysabri that has better odds of you getting less disabled than the other CRABs. Or they offer drugs that will control some symptoms (and then there's the side effects from those drugs to deal with).
Occasionally over the years, we've heard of "cures", but it turned out that the story was about one person and they could never replicate it.
But CCSVI is different for several reasons.
First, some doctors (not necessarily our traditional neurologists) are finding common structural explanations for MS. MS may indeed be a problem with the immune system, but there's no current way to prove or treat it with that hypothesis. But with CCSVI, the doctors can point to a place on a film (or whatever they're calling the images from the various scans) and say "here is the problem that needs to be fixed". Because CCSVI has been accepted as a congenital condition, at least in some cases, it preceded MS. In other cases, perhaps an injury or other occurrence created a similar blockage, but it's still something concrete that can be identified.
Second, after treatment, doctors are seeing significant improvement of symptoms in patients -- a fairly high percentage of patients, considering how few procedures have been done. I suspect that the doctors have had such a broad range of improvement in so many people that they didn't realize that they would have to quanitfy it, and now they're putting together formalized trials to gather data. That means that, although we patients hate having treatment delayed, we're dealing with doctors who have some hope of actually making us better, unlike the current thinking from our neurologists.
Third, while no treatment works for everyone, CCSVI appears to provide a wide range of benefits to patients. We struggle now in that there is no central registry of data of what those improvements are, how long after surgery did they appear, and how long will they last. But now we have doctors looking to capture that data and perhaps in a year or two (not that we want to wait that long), we will have a much better picture of what results CCSVI is likely to produce. That's still less time than it takes to run trials for a new drug.
Fourth, CCSVI offers the tantalizing hope that the negative aspects of MS and of what we endure while being treated may be markedly reduced -- or in some cases, even eliminated. For me, taking Tysabri is so much better than better than the eight years I spent on Avonex and its weekly side effects. But I still deal with MS symptoms, and that monthly visit to a chemo clinic sure is a bummer. And all that Tysabri does it hold out some hope that I won't get worse -- that's a hard concept to build an upbeat slogan about.
Fifth, CCSVI research suggests that, at least for some patients, in a matter of a couple of weeks, MS could be diagnosed and treated. How many of us have spent years going from one doctor to another with none of them being able to tell what what wrong with us, let alone actually treat it? The idea of getting a prompt, accurate diagnosis -- without all the trauma of procedures like a lumbar puncture -- or being sent to a psychiatrist because a doctor couldn't see a problem, may be a thing of the past.
And sixth, CCSVI can, at least for some, be diagnosed and treated for far less than we now pay for one year's medication that doesn't solve any of our problems. And that still applies even for those who have traveled overseas for treatment!
To have so many doctors (except those jolly neurologists) excited about CCSVI is incredible. And their results are being reproduced in clinics in Italy, Poland and Jordan, not places that Americans think of as sites for cutting-edge technology. In America, our national news media has not run a single story about CCSVI, but in Canada and England, clinics and or studies are cropping up all over.
Am I hopeful? You betcha!