I've noticed several posts by people who have had pain in their neck and other areas after the ballooning. My big fear is tearing of the veins (yes, I know every procedure carries risk, yada yada) not to mention other complications I've read of.
The thing that really bothers me about having the procedure - though I believe CCSVI is a real condition and if it is present, should be treated - is the fact I have no choice but to travel at least 2,500 miles and no follow up will be performed, and no follow up with anyone knowledgeable exists where I live.
Sad that trials & treatment are so slow getting off the ground and forcing people to either wait until treatment is available close to home, or insurance pays for it (which mine won't), or at least follow up is available close to home.
So, although I have an appointment, I'm strongly considering canceling it. Not because I don't believe in the benefits of treatment - but because of the assembly line methods being used (treat today, go home tomorrow), and because no one in my area is available for follow up.
This means if I had complications, the difficulty in getting a flight back to where the treatment was done, would take at least one, possibly as many as 3 days (flights get solidly booked here).
The stress is completely tearing me up as I do believe the treatment could help me. But the risks may be too great - not so much of the initial procedure - but the lack of follow up and the extreme apathy of all of my local doctors as to what I do and what happens to me.
The truth of the matter is, I don't think any doctor I have gives a fig - and the ones doing the procedure, though they believe in it, are basically running an assembly line. I'm told I'm welcome to come back should I need to, but again the cost of flights, delay in booking, difficulty of an 8 hour airplane flight - are sobering realities.
I think I need to wait until this procedure is offered close to home. And that may well mean getting no treatment as I'm no spring chicken!
Talk about stress. But I need to be real about my particular situation. Believe me - if I lived closer, and could get this done via a road trip or short air flight, I'd have it done in a heartbeat. But that's not my situation and I feel it's not for me - not until the doctors here finally open their friggin minds.