Cece wrote:It surprises and saddens me how much the ledge gets brought up in the MS community. I haven't had to face what some people have, with increasing physical disability. If at all possible, if the joy in life isn't finding us, we need to find it. Part of why I am here at TiMS is because being a part of the CCSVI community brings me joy. We are building toward this treatment being proven and available.
Ok, over the weekend, I have grown older and wiser. ('Twas my birthday yesterday.) All my focus was on whether or not my vein had lost that 2 mm, but if that did happen, it was right after angioplasty. So if I am on a slight downward slope with the colors less bright and occasional return of symptoms that had been gone, it would need to be caused by something that happened more recently, and so it would be some mild renarrowing, and the retrograde flow seen in the right jugular would support that theory. The flow there is definitely not straight down and out. And this is flow, which is Doppler's strength, not structure.
So, I probably have mild renarrowing with no significant loss of improvements. Mild renarrowing might slowly become moderate renarrowing or severe renarrowing, and no significant loss of improvements might slowly become some loss of improvements. I am afraid that this will happen and, when it does, I won't have access to the procedure anymore, if insurance companies disallow it, following Medicare's lead.
The procedure isn't expected to last forever. Maybe for some it does. The goal of tweaking techniques toward perfection is to increase the amount of time between procedures, with two to three years being a reasonable expectation. I'm right in line with that.
Happy belated Cece!
I think the ultimate exit comes up when what brings you joy has been snatched out of your hands. I played the drums for 25 years previously. As I became more disabled, that joy kept slipping. Enter ledge, without hope.
I made my before after video public specifically to pull some back from the ledge. Maybe I can help them see new joys. Just like I have.