8 Month Post Neuro-Stent Life Update

Eight months ago, surprising even myself, I made the decision to have my stent placed for my Intracranial Hypertension treatment. 

In all honesty, a part of myself didn’t want to get better and I hate to admit that, yet it held true at the time. I had decided to move on with my life after my darkest night, only to get diagnosed with this rare disease a month later. It was the cruelest twist of fate, a huge cosmic joke if you will.

I thought navigating disabled life at fifteen years old was the most difficult thing I’d ever done. It has taken me fifteen years since then to find my stride in my care team, how my body speaks in the smallest of ways to me, navigating in a world not build for me and much more. Having to do it all again at thirty three was something I always knew as a possibility. It’s just….I suppose I never anticipated the gravity of it. Especially when it came to something like this…

There are days where I don’t recognize myself at all anymore. 

Concentration became something I truly struggled with after my first COVID infection. I often tell people it’s like “trudging through tar.” 

While things have gotten a lot better on that front, thanks largely to time and the patience I give myself, there are days where I slip back there. Sometimes it’s just a day, sometimes it’s weeks, due to coming out of remission or from meds. Simple decisions are seemingly overwhelming and difficult to accomplish because I simply can’t muddle through the logic of it. Yet if it’s a huge issue I need to sort out it’s no problem at all. I’ll tackle it in five minutes. It all truly has no variable structure and at first, I beat myself up for it. Now I’m just understanding this is my new norm and trying to be gentler with myself.

Speaking of remission. Let’s talk about that. 

The surgeon said it would take up to a year for the stent to “work its way into my vein” and become effective. We’re only on month eight. What has that looked like? Well. Have ya’ll ever ridden Hagrid’s Motorbike in Universal? (Look it up on YouTube if you haven’t). The ride accelerates, as they all do in the beginning. Then there’s this bit where you hit the “end of the track”, the bikes go completely vertical, then backwards for a while. Next you’re plunged into darkness and then BAM! You drop off the tracks onto another track and then you’re off faster than before! 

That is EXACTLY what recovering from neurosurgery is. 

I feel like utter shit for six weeks and am nearly bed bound again. Then out of nowhere, experience three weeks of remission for seemingly no reason. The extremes are exhausting and difficult to explain to the average person. Dropping off the track in total darkness and being propelled back into the race at 50 miles an hour into the light is excruciatingly exhausting. You’d think waking up one morning feeling “fine” is a blessing, but it isn’t always. I very often over-do it because I’m feeling good then end up in a different kind of pain. HAHAHA. Just because I’m better from the IIH stuff, doesn’t mean I’m “better.” When it comes to the IIH remission, there is absolutely no consistency of any kind. I have no idea what meds or lifestyle things I’m doing are working, so it’s all hell in a hand basket and seeing what, if anything, works. Even though I am tracking EVERYTHING, it still seems so random most times.

I know many of you are wondering how I’ve been doing, and honestly, I don’t know what to tell you. Every day is different. Day to day is the extent that I can play it. If it takes me a week to reply to you, that’s because it’s what I can do, (the reply, thinking of a reply is too much at times) and I know many of you understand that. I’ve funneled everything I have into my career and getting back to discovering what my new baseline is and how life looks now.

I had to speed through all the stages of grief in the year I had from diagnosis to surgery that I truly had no time to navigate the anger stage. I’ve been sitting with anger for the past eight months. 

And ya’ll I’m just fucking tired. 

I know these were not the cards I expected to be dealt, yet again, but I can’t change them and that’s okay! 

If it takes another fifteen years for life to level out, it takes another fifteen years. All I know is that it did eventually level out for my epilepsy and all my other nonsense, so if the constant holds true, it will for this too, surely. I mean, it’s gotta, right?

I want to spend the energy that I do have, when I have it, giving back as I always do. Helping others navigate this silly little world by telling my story. Next up from me, I would like to make a walk through of the whole process from diagnosis to surgery that will be an in depth catalogued video up on Youtube for any fellow IIH-er’s to find as they need it. 

Yearly, if I am able, I’d like to keep raising money for the Intracranial Hypertension Research Foundation. One of the biggest  frustrations  I had personally, was simply finding information. Outside of one published book, all my information comes from Reddit, and a few Facebook groups. There’s plenty of knowledge in patient led community care, and story sharing of course. Yet, I do believe there should be more for us out there. We should have options beyond essentially two medications and surgeries. We should have doctors who know what to do with us after surgery. We should have more research around this and the comorbitidies that seemingly surround it. We may be 1 in 100,000, but that doesn’t mean we deserve any less on groundbreaking research.This year, my friend SpicedEliastrations hosted me on their Twitch channel and we managed to raise $521.98 for the Intracranial Hypertension Research Foundation!! It was a great time and I’m truly hoping that’s something I can do every September. 

I have found hope and companionship among the expected and unexpected. Hope still sits next to me in the extra chair of the doctors office and waits beside me, kicking their lil feet’s. However, I’m finding they don’t wait in anger anymore. They wait patiently and with kindness.