Cece wrote:ikulo, I looked back over the thread, your contributions were not the problem, thank you for sharing your outcome. We need to hear all sides.
The original caution was that people with mild MS should think twice before having this procedure. As a person with supposedly mild MS (but where does disabling fatigue fit in that descriptor?), this is a topic I am interested in. Early reports were that people with relapsing remitting MS fared the best after the venoplasty procedure. This holds up logically too, that there is an accumulation of lesions and damage done to neurons as the disease marches on, so better results if the plumbing is fixed early, before the neurological damage accumulates. We have had stories of this too: the "I no longer have MS" group. If those statements hold up over time, that's amazing.
We are still learning about the risks of this procedure. I can see the argument that if anyone can afford to wait, it'd be the people with mild ms, and that so much progress has been made in the last six months that more progress will be made in the next six months. I'm tired of waiting, but I can see the argument.
Us early-going-inners were fortunate in a weird way, to have much less info to go on. While that can be criticized from a strictly "better to wait" angle, it also meant there was far far less noise to wade through. There were no incredible miraculous 3 days post-op stories, and not too much in the way of the opposite either. No press items, no youtube, just people on here and some stuff from Italy. That's it.
We went on the best available info and made our individual decisions. If I had to start now, I honestly wouldn't know what to think. If you are convinced this is The Answer, you can spend all your time bolstering that POV. If you are skeptical, you can do likewise, plenty of info to choose from.
While warnings aren't exactly scarce nowadays, they are there and should be read right next to all the other info. This contention that somehow people are scared to post against the flow is ridiculous, there's been plenty of stories just on this board including a sticky dedicated to just that.
However, make no mistake about it, if I were doing it now, there's no way I'd be in the 30% thumbs down category post-op. (in my mind at least).
You raise an interesting dichotomy though. The very people who theoretically should wait, are the ones that %-wise are experiencing the most noticeable (and admittedly anectdotal and scientifically unmeasureable) benefits. Hope I shaded all the grey nuances correctly.
I would proffer that if someone cannot at a minimum explain said nuances from point A to B and all points in between, then perhaps they should wait. IOW if they are in possession of a lengthy mental checklist of every possible scenario and their practiced response to that, and have worked through every scenario to it's ultimate conclusion to the best of their ability, then they may be ready to take the plunge. If however someone is merely jumping on a plane to do this thing they read about and can't even begin to explain it (which requires a certain level of understanding), then perhaps they should put the brakes on for a bit. Especially early MS'ers, which admittedly I was myself.
When I went up to Stanford we had many hours to discuss these things in the car. There was all that "wow isn't this exciting?" discussions, followed by what we called "worst case scenarios", and yes, there was a list of those too. So yes, it's important to stay balanced and not ignore these seemingly negative findings, nor to overemphasize positive findings in the context of extremely short time spans either. Time will tell and it's in no rush unfortunately.
I do not envy people who are making these decisions now. Not at all.
Mark
