It was a week ago today I had my surgery. How do I feel now? Well, so far everything is going to plan. The immediate benefits of better circulation are still felt every time I wake up, with warm hands and warm feet helping me to greet the new day ever since the first morning after.
My dropfoot (tripping over my own toes) has decreased by 90%; that was a bonus I never expected. I seem to be more mentally alert and capable of multi-tasking, but that could be the post-surgery high; I admit that such descriptors are subjective.
So what now?
I’ll need to decide whether to keep on my old immuno-therapy drugs (Copaxone) or let them go; I was assuming I would let them go– but until we have a solid understanding of how antibodies come to attack the nervous system prudence might dictate keeping up with them.
The Zamboni/Simka working model is that bad circulation of blood through the brain allows a concentration of iron to build up, eventually eating its way through the blood/brain barrier and providing a pathway for blood-borne antibodies to attack the nervous system, eating away at the myelin sheaths around nerves, etc.
Sounds very plausible, but it is the part that will take time to understand.
Meanwhile, my own belief is that we need to take MS out of the equation, and when scans show significant vascular blockages in the neck, patients need to be referred to vascular surgeons to have that remedied as a matter of course. The benefits of good circulation clearly go beyond the needs of MS; if you had a vascular blockage in your foot or even your little finger, you’d have it seen to immediately. A blockage at the base of the brain should be no less urgent!
I think that before the year is out some Canadian GP is going to tell a patient presenting with neurological symptoms to have a MRI neck scan done in Montreal or Vancouver, and if it shows positive for CCSVI, to see a vascular surgeon. There is a clear and compelling case for Canadians having the right to this surgery in their own country and in my opinion professional bodies and medical charities that obstruct that right are probably opening themselves up to legal action.
Certain organizations need to be reminded of what happened the last time a health charity in Canada got between patients and the information they needed to make an informed decision. Twenty years on, you can still ask any hemophiliac what they think of the Red Cross. That charity never regained the public trust over tainted blood supply, and eventually had its role in the blood business stripped from it by the state.
So fair warning to those organizations who are taking the paternalistic “we know best” attitude on behalf of those who they claim to be advocating for. We have long memories, and if we find that you have been obstructing our right to necessary care, we will find the resources to fight you– and win. And when we are finished, the face of MS advocacy in this country is going to look a lot different.