I just got a stent on Saturday. Ask me anything!
I (31F) was diagnosed in February of 2019 with visual disturbances, pulsatile tinnitus, debilitating pressure headaches that radiated down my neck and back, and paplidima. I had an LP opening pressure of 22. MRI was normal.
I was initially put on Topiramate and diamox. I couldn't tolerate diamox so I was switched to furosemide and stayed on both medications until I lost 10% of my body weight. Once I did that I was considered in "remission" and taken off the meds completely.
5 months later I had my symptoms come back but had since moved across the country. I had not gained the weight back, but the meds seemed to be keeping everything at bay. I was not given the option of meds again and was told to just lose more weight. Something had to be going on under the surface but I was dismissed.
Over the years I have been getting cyclical flairs around fire and monsoon season here. These had been getting progressively worse and spanning more time out of the year that I was out of commission. This year things happened very fast.
I went in for an eye exam and a change in my migraine meds. I was told my paplidima was severe and I needed to go back on Topiramate and get another LP. Opening pressure was 36 so they drained a good amount. While I was getting my LP the surgeon mentioned Venous Sinus Stenosis and I should get an MRV with contrast. The radiologist said my MRV was normal (congenitally small left side) but my doctor disagreed. As my vision was deteriorating quickly and my headaches were getting worse we decided to do an angiogram 4 days later. The angiogram showed a 16mmHg gradient, so they admitted me and I got a stent the next morning.
I can answer any questions you have about the process or healing after (I'm still in the midst of that). If you're in the Southern Arizona area, look up Dr. Fahad Laghari at Corondolet Medical. He is outstanding.