How I'm Doing One Year After Having a Stent Placed in My Brain

Tomorrow is my stentiversary!

Almost one year ago I chose to have a stent placed in my brain. It was placed in my superior saggital sinus. This is the main vein that runs in the center of your head and then branches off bilaterally to the transverse sinuses. I had this placed for venous stenosis, which is either primary or secondary to intracranial hypertension. One of those which comes first, the chicken or the egg scenarios. It was placed by a physician at the forefront of this research who is dedicating so much of his time to help people with connective tissue disorders and intracranial hypertension.

IMAGE-3d recreation from recent CTV scan. Stent is circled, face was cut off digitally.
IMAGE-3d recreation from recent CTV scan. Stent is circled, face was cut off digitally.

This past year has been one of the most difficult in my life. I was naive to think that just because my brain surgery was minimally invasive that the recovery would be a breeze. I had complications from the surgery, just like I did from the diagnostic angiogram, and the nerve pain from that hematoma was excruciating. I’m no stranger to headaches (one of the top three reasons I chose to do the surgery), but the headache after my stent was placed was like no other. It was like something gnawing at my head from the inside, with not even a millisecond of relief, at all, ever. By day three I just cried and cried because I felt utterly broken.


Then came the burning in my neck, which we still haven’t figured out, but it seems to be vascular in nature. It has to be related to how much fluid is getting out or backing up there, and not getting out. Then, because I’m just so awesome, I took a medication two months post op for pneumonia that can individually cause intracranial hypertension…which I already had. I thought my brain would literally explode from the pressure. Fluid was leaking from my ears!

So, I had to counteract that with fluid pills, which I have been taking on and off since then to help maintain my pressure at a bearable and functional level. I also have to take daily lovenox injections, because I found out post stent placement that I have a few different clotting disorders. Individually they aren’t a huge deal, but in combination with mental in the main vein in my artery they become worrisome.

Having intracranial hypertension isn’t just having a headache…though the headache when the pressure is high makes me want to stick my head in an ice bucket and freeze it until I can’t feel anything. The brain fog, cognitive deficits and hearing impairment are by far almost equally as bad as the pain. I also have something I like to call scrambled egg brain, where it feels like my head is vibrating and someone has a fork in there going to town on it.

So, here I am a year out and I can maybe finally say that I feel like the stent has helped. Now to live with the fact that I had an experimental brain surgery and no one knows what’s going to happen to the stents (which are not designed to be used in a vein inside the brain) in 10-15 years.

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