Unexpected Consequences

on recovering from venous sinus stenting

It’s been a hot minute since I’ve posted, which I feel bad about because I had visions of providing all sorts of witty and informative post-surgery updates. (I managed this one, at least.) That said, I’ve found that saying, “I’m so sorry - I’m still recovering from brain surgery!” is very effective in making people who want things back off. (Even my case worker for long-term disability benefits - who calls roughly every six weeks to make sure I haven’t somehow recovered completely and started living large since the last time they demanded extensive documentation - got all flustery and apologetic when I told her I was going in for neurosurgery and so might not be able to get her the latest forms back right when she wanted them. The only exception so far as been the editor of Unnamed Philosophy Journal who would not let go of wanting me to referee a paper. Thanks for the guilt trip, bucko.)

Anyway, “Hello! Sorry for not writing sooner - I’m still recovering from brain surgery!”

It’s been eleven weeks since I had a long mesh stent inserted into one of the main veins in my brain to reverse its almost complete closure and resulting increased intracranial pressure. The stated goal of the procedure was to alleviate the cerebrospinal fluid building up behind the blockage like kids at a waterpark slide in July, since the fluid and resulting swelling was pressing on my optic nerves and causing all sorts of other neurological mayhem. I also harbored a (not-so-)secret hope that having my CSF circulate normally again might chill out the varicella zoster virus that has been frolicking in my trigeminal nerve and causing regular viral meningitis flare-ups since 2023.

So how’s that going?

On the one hand, eleven weeks is a long time! We were eating fresh cherries and blueberries when I had the surgery in July, and now we’re at the end of peach season and looking towards pears. It’s been time enough for several of the worst symptoms to significantly improve: the constant high-pitched pulsing/ringing in my right ear is gone, for instance, and quieted significantly in my left ear. On the whole, I also have more energy now than I’ve had in a year - I’ve stayed up past 8pm several times in the last month, thank-you-very-much! Most wonderfully, the nerve pain that regularly colonized my spine and sent outposts down my arms and legs has almost completely disappeared. The difference this makes for my daily life is enormous: when I’m not having a flare-up, I can do frivolous things like ‘leave the house’ and ‘wander around a room’ without needing to calculate the cost of each move in advance like a chess player. (The flare-ups continue unabated, alas. At least the ramp-up and aftermath are shorter and less painful, and I can do much, much more in the two weeks between them!)

On the other hand, eleven weeks turn out not to be so very long in terms of surgery that involves one’s brain. My follow-up MRV (an MRI of my brain that also looks at the veins) is still three weeks away, and I need to remain on two different types of blood thinners until those scans demonstrate that I’m not in danger of a stroke. I’ve never been on blood thinners before, but WOW are they a bad combo with being generally clumsy + one’s brain recalibrating balance and vision; I am covered with bruises to the point that I resemble an extremely pale bipedal cheetah. (Adopting an adorably enthusiastic second dog in August has not helped with the bruises.) And I still have no idea when my brain will reach full post-surgery stasis, although things do thankfully seem to be calming down.

Meet Fenja! Torbjorn is delighted to have a playmate; we are just generally delighted…except about how she just spent a month in heat. But that’s a topic for another post.

And here we come to the crux of this post: for all the incredible care I received from my neurosurgery team before, during, and immediately after surgery (and it really was fantastic), I left the hospital with almost no idea of what to expect in terms of recovery over the following weeks and months.

Apart from telling me to come back immediately if I developed stroke-like symptoms, my post-op instructions were all directed at the care of the incisions in my femoral artery and vein. (Speaking of, Andy and I just watched ‘The Pitt’ - which is both incredibly good and astoundingly stressful - and there was a scene where they’re cutting into someone’s femoral artery on one leg and femoral vein on the other to circulate their blood through an ECMO machine. As the team completed the dramatic incisions and did their ‘stuffing medical things into the artery/vein’ magic so that the person didn’t immediately bleed out, I yelled, “Look, it’s MEEEEEEE!!!!” Not sure Andy wanted or needed that mental picture, but there we are.)

The complete lack of information I’d received about what was likely to happen to me neurologically was driven home to us during my first post-surgical follow-up. We’d carefully curated a list of Weird-and/or-Troubling Things to ask the doctor about over those two weeks, and the conversation went something like this:

Fancy Columbia/NY Pres Neurosurgeon (FCN): “So how’s it going?”

Me: “Pretty good I think? I had a fever of about 100-101F off and on for about a week afterwards, but it’s gone now.”

FCN: “Sorry to hear it. When you’re intubated, it can cause a lung or part of your lung to collapse, and that can often cause a post-op fever. Did the ICU nurse send you home with an incentive spirometer?”

Andy: [quietly freaks out about the casual ‘oh yeah, part of your lung probably collapsed’]

Me: “No, they did need to keep giving me oxygen the night after the surgery because my sats kept dropping, but they didn’t send me home with a spirometer. I guess I’ll just keep breathing deeply?”

FCN: “Great! Anything else?”

Me: “Well, I can’t really hear out of my right ear: it feels totally plugged up, but nothing I do helps.”

FCN: “Oh, that’s totally normal. There’s usually a good bit of swelling of the tissues and extra fluid back there after we jam the catheter through your jugular vein and into the dural sinus to insert the stent.”

Andy: [now with a ‘WTF?” dimension to his freaking out]

Me: “So is that why my jugular artery on the left side was so sore afterwards?”

FCN: “Yup! We ran catheters up through your brain arteries, too, to make sure you didn’t have any fistulas. Anything else?”

Me: “Well, I do have this constant blinding pain running from the inside corner of my right eye up to this point on the top of my head and then back behind my ear?”

FCN: “Ah, that’s probably also a result of the swelling and inflammation from where we inserted the stent. Let me know if it doesn’t go away in another week or two.”

Me: “Um, ok. The last thing is that my vision has actually gotten worse rather than better - I’ve got wicked triple vision in my right eye now.”

FCN: “Mmm. Unfortunately, parts of your optic nerves were deprived of oxygen for a very long time due to the increased intracranial pressure. It may take a long time for them to recover - if they ever do recover fully.”

Andy: [looks at me in horror]

Me: “Oh! Wow. Huh. Fun!”

FCN: “Ok then, glad to hear you’re doing well - see you after your MRV in late October!”

In other words, our list of Weird-and/or-Troubling Things was composed of entirely normal after-effects…but no one had warned me about any of them! For that matter, although the doctor was great at answering our questions, there was no point at which he said anything like, “Oh! And over the next few weeks, don’t be surprised if you experience any of the following…”

Now, I get that each patient is a unique neurological snowflake and that recovery looks different for everyone, but I can’t be the only person who had this surgery and whose sinuses then spent two weeks whistling, popping, squeaking, and moaning like a house haunted by a circus clown. Or who spent two weeks developing a migraine every time they sneezed.

Right?!

Anyway, I guess you can consider this my PSA in case you ever have this or a similar surgery. During my extensive attempts to find out what was happening to me, I discovered that on-line for resources for what to expect post venous-sinus-stenting (VSS) largely fall into two unhelpful camps: testimonials from hospitals offering the procedure, ala “After my VSS with Dr. Amazing, my pulsile tinnitus went away immediately and now I run marathons!” and “I seriously thought I was going to die, but now I am A-OK!” and scientific articles from medical journals that contain sentences like “87 out of the 92 subjects experienced partial-to-complete relief of a majority of their symptoms within six months; 4 patients experienced worsening symptoms, and 1 patient died.”

So I am here to tell you that if your intracranial pressure has been elevated enough to cause serious issues for an extended period (say, two years), you will undergo a period of what I have ultra-scientifically termed ‘Pressure Recalibration Flux’ (PRF) for at least the first three months following stenting. During that time, do not to be alarmed if, in addition to any or all of the weirdnesses described above, you develop

• the gait of a drunken sailor while your inner ear and brain frantically attempt to coordinate their signals as swelling fluctuates in and around your noggin

• the sense that things are suddenly smelling and tasting strange in one way, and then another week or so later, smelling and tasting strange in a completely NEW way! (I can’t tell you the number of times I’ve asked Andy which coffee I’m drinking because it tastes new and exotic, and he tells me its exactly the same kind I had that morning)

• a non-stop migraine with frequent shimmering visual aura that lasts for ten days and then goes away as suddenly as it appeared

• the inability to consistently remember where you are when you wake up for a month or so: just remember, the odds of developing dementia immediately post-VSS are pretty small

• the unshakable conviction that your new dog is actually a cat

All this and more can be yours when you start messing with the hydro-mechanics of your cranium! (Honestly, I have no words to describe how odd the last two experiences were. I knew perfectly well that Fenja was a dog - I could see that she was a dog, among other things. But my brain kept labeling her “CAT”, even as she snuggled on my lap and gave me puppy kisses. And I have a whole post-stub started about the oddly floaty sensation of not knowing where I am when I wake up, which I might make its own thing soon.)

My Pressure Recalibration Flux does appear to be slowly resolving, and I’m 100% glad that I had the procedure! I just wish I’d had a better idea of what to expect afterwards: I enjoy the shock of recognition (“oh that’s what they meant by X!”) much more than plain old regular shock.

At the end of the day, I suppose that underscores the whole purpose of writing these Brain Damage Diaries. I had no idea that most of the things that have happened to me in the past two+ years were even possible, much less what it might be like to experience them. “Write what you know,” they all say. [Edit: Andy had to tell me that this originally read: “What write you know”, which does rather bring home my wonkiness of my brain but would be too confusing to keep as was.] And, as the PSAs at the end of each G.I. Joe cartoon assured us: “Knowing is half the battle.” So I guess I’m half-a-battle in?

Yours from the front lines,

Christina

P.S. Until next time, be nice to your noggins!

P.P.S Here are two bonus photos of Fenja and Tor, because I can’t just drop that we adopted a new dog and only include one photo! I love this sequence cause it looks like Fenja just told Tor a really bad joke and cracked herself right up.