I know this might be a dumb question but it's one I've had in my head for a while so maybe someone could enlighten me.
For those of you that went to Poland ... did you know you had stenosis in your veins before going? Or did you get tested as you went?
Isn't that a big risk/cost to go and they not find anything?
I just wonder, because I see now that BNAC is going to do pay-for testing ... is it worth it to get it done first ... and then look into a trip to Poland (even though it's a long wait) and pursue doctors here ... or get on a list for abroad and just risk going there and nothing being found?
Has anyone gone to Poland and not had anything found?
I don't have a mainstream medical diagnosis of CCSVI, but I can feel it, and it makes sense to all of my MS experience over the last 17 years (actually, more like the last 35 years). My cranio-sacral massage therapist has also identified "paradoxy" in the flow of my carotids and jugulars (they pulse simultaneously), some trouble at the juncture with the brachio-cephalic vein, and mentioned a bulge in the azygos. Since I have complete faith in her sensibilities, that is enough for me to go to Poland "blindly". Further, with reported 95% (+/-) affected jugulars in MS patients, the probability is exceedingly high that my jugulars are messed up. The only question I have, is "why"?
I do seem to recall that one woman reporting on this forum, I think from England, went to Poland for screening, and no stenosis was found. I regret that I cannot remember the details, my brain function is poor these days.
All testing and studies aide, what does your wife's heart tell her? Does she feel a fullness in her throat/neck? Unexplained chest pains? Does she feel worse after sleeping all night? Chances are +/- 95% that she has stenosis, or another venous pathology. $4500 for testing will fly you to Poland in business class. Make a trip of it - go see Prague (Czech Republic), etc., then even if she has no stenosis, you will get something from the trip.
My name is not really Johnson. MSed up since 1993