Any of this may be subject to suggestions specific to EDS/POTS that I don’t understand yet, maybe Dr Diana can weigh in on this overlap. always start with the least invasive approach, which might be the medications she suggests.
I am coming at this from an MS perspective, and have been treated 4 times w/ stents. I started early with the first group treated at Stanford in 2009, and now there is better understanding, so it takes fewer treatments now, depending on your tendancy to re-stenose. Also, they try to steer clear of stents now if possible…
Last thing, an interventional radiologist is not trained to treat the deep cerebral veins, that is reserved for an endovascular neurosurgeon, and so far we don’t have any treating CCSVI. Keep your results if this is the case, get the veins treated you can, and we’ll have to wait on the cerebral veins for now.
Thanks for all the information Sammy Jo! Thank you for being a Ccsvi treatment pioneer!
I wasn’t aware you’d be treated FOUR times, I – pw’MS’- was treated once -2011- by inexperienced, yet
earnest Vascular surgeon…my insurance paid — a Vascular condition NOT ‘MS’
Q. am I delusional or hasn’t it been determined that Int.Jugular Veins are NOT inherently ‘at
fault’ in creating the Stenoses? – oft times it IS the Valve that’s malfunctioning
and once That Valve is destroyed/ etc. — wha la! ‘normal’ valves?
So grateful for all that Dr Diana is doing to help look at the Bigger Picture of Ccsvi,
etc.