March 31, 2011 at 7:49pm
Let's talk about the word cure. This is a very, very powerful word. We use it when we talk about solving the worst of our mystery diseases, like cancer, diabetes, Alzheimers and multiple sclerosis. But the truth is, doctors are now admitting there may not be an actual cure for these diseases. They are beginning to write and speak out and say that prevention and lifestyle changes early in life may stop these diseases from happening later. Here's a highly recommended paper on "the best cure for disease"
Let me explain further.
We understand that there is no cure for a stroke, right? Someone develops a blood clot over time. Maybe they smoked, maybe they didn't get enough exercise and liked to eat fatty foods, or maybe it was just a predisposition they inherited. One day WHAM! The clot breaks off and heads up the carotid artery and goes into the brain. The clot blocks blood flow and brain tissue doesn't get oxygen and it dies. The stroke patient is given clot busting medicine, blood flow is restored, but there's been damage.
Well, it looks like the damage from CCSVI could be somewhat like a stroke. It may be affected by epigenetics and environment. Lifestyle matters. It is a chronic process due to a venous malformation which creates slowed cerebral blood flow and possible venous hypertension.
My husband lost his peripheral vision as a kid due to a swollen optic discs--but it wasn't until 30 years later he got an MS diagnosis. We now know he had venous hypertension his whole life. That's a long time! Eventually the brain is not able to reroute around the damaged parts and there is MS progression. This leads to an MRI, a lumbar puncture, an eventual diagnosis of MS. But the part of the brain or spine or optic nerve that has been damaged is not going to come back completely, even if we get blood flow going correctly. Dead axons are dead. My husband won't get his vision back.
My husband lost his peripheral vision as a kid due to a swollen optic discs--but it wasn't until 30 years later he got an MS diagnosis. We now know he had venous hypertension his whole life. That's a long time! Eventually the brain is not able to reroute around the damaged parts and there is MS progression. This leads to an MRI, a lumbar puncture, an eventual diagnosis of MS. But the part of the brain or spine or optic nerve that has been damaged is not going to come back completely, even if we get blood flow going correctly. Dead axons are dead. My husband won't get his vision back.
There is hope through rehabilitation and recovery. A stroke victim works hard to learn how to walk again, to speak normally, to take care of themselves. Perhaps, via plasticity, the brain can reroute around the damage. But there is no "cure" for a stroke. A stroke victim doesn't go back to the way he was before the stroke. And that also happens in MS.
We need to stop speaking about venoplasty to relieve CCSVI as a cure, or a return to complete health. It just gives false hope to pwMS, and leads to high expectations and later disappointment. The truth is, the brain and spine may be damaged due to years of insufficient blood flow. That doesn't mean there is no hope. There may be symptom relief for many. Often the relief comes in a lifting of fatigue or heat intolerance, a reduction in spasms, a return of better vision, clearer thinking, and yes, even return of mobility in some. This allows for physical therapy, brain plasticity and rerouting, retraining the body, adopting a new, healthier lifestyle and hopefully, an end to disease progression. Just like a stroke patient--it is all about rehabilitation and a new life.
To make venoplasty the "cure" for MS is to expect too much. Dr. Zamboni says so himself--this is not a cure. As a community, we have to be honest with those who are looking at this treatment. We need to be honest with each other. And we need to realize that venoplasty is not a one time magical answer to ending MS. It is a commitment to an ongoing lifestyle, a relationship with a vascular doctor, hopefully covered by insurance, and a new life. That may be hard to read and harder to comprehend on a gut level, but it has to be said; because too many are mortgaging the house, using their IRAs, going into debt--to buy a "lottery ticket" for a cure. And they're getting hurt.
Don't get me wrong, I believe in miracles. I've seen them in my own life and in others' lives, and I know God is bigger than any one of us--but I also believe in honesty and full disclosure. Please understand that no one, including the doctors, is calling this a cure.
Joan