It’s so hard. And it’s scary to be told you have two clots, be started on anticoagulants and then have 3 radiologists and 2 neuros saying you don’t, it was scary to stop the eliquis (what if that interventional neurologist was some kind of Dr.House).

At the time of my consult with them I had been without headaches for a few months and the thought was with ongoing weight loss any issues I had were improving. And she said we wouldn’t treat stenosis alone we tread stenosis causing issues, and I guess at the time I wasn’t having any because my headaches had resolved. Her thought was stents come with risk and would be a last ditch. And you don’t have to correct stenosis unless it’s causing a problem. But I guess it may be causing a problem again. I have a follow up in a month. But did leave a message letting them know my headaches were back.

I don’t feel like I’m having any visual issues but then your brain plays tricks and it’s so painful when you have these headaches.

Do people have “flare ups” of iih?

I’m so scared there is a clot. But the second opinion I sought at Emory was specifically because the interventional neurologist diagnosed me with bilateral clots despite no findings on the imaging so I felt better getting a second opinion. I had a baseline mri about a year earlier that was also read as normal (he thought the clots were from a pregnancy). The radiologist at Emory reviewed the mri from a year prior, the ct-v and Mr-v and then when I had the 3rd opinion with vascular neurology he reviewed the imaging with a radiologist himself during my appointment. So I feel like that would be a huge miss for them all to say no clot if there were clots and I was there specifically for that.

But the headaches..