The One-Month Checkup

This was in my fortune cookie the day I had a checkup with my neurosurgeon.

November 29^th marked exactly four weeks since my craniotomy and was the day I met with my neurosurgeon to discuss how things are going. Once again, I was reminded of how the doctors I’ve had at Abbott Northwestern have been excellent: Dr. Stanley M. Goldberg for my colectomy – he spoke directly to me and not just to my parents even though I was only 13 – and Dr. John Mullan for my craniotomy. They are/were both good at what they do, respectful, reassuring in their confidence, enthusiastic about the work they do, and … hmmm. I want to say something like “easy to talk to about my concerns” or “not dismissive” or something along those lines, but those terms seem inadequate. I felt heard. That’s probably one of the best things you can say about a doctor, in my opinion.

So here’s where I stand, one month post-craniotomy:

·       Pain: If there’s not another body part vying for my attention (I’m looking at you, left foot) or a garden-variety migraine, my consumption of acetaminophen averages around 1000mg, though one day I got by on 500mg. The migraine rather sucked, I must say, as it started four days before I could take Excedrin Migraine, the only thing that helps, because it contains aspirin which can’t be taken with Keppra. Occasionally I feel pressure on the left side of my head as if that part of my skull is screwed in more tightly. (News flash: It literally is. I have titanium bone screws holding the bone flap in place.) It doesn’t hurt so much as feel a bit awkward.

·       Neurological issues: For me, the post-surgical neurological issues were the peripheral vision cut and some proprioceptive problems. All cleared up in about 4-5 days and haven’t recurred. My right hand is fully integrated with the rest of me now. Huzzah!

·       Cognitive issues: I sometimes feel overwhelmed when I have to attend to both visual and auditory input at the same time for an extended period. (See this post.) At my checkup, Dr. Mullan pulled up the MRI images of my brain, both with pet head-rock and without. The sensitivity to visual stimuli makes complete sense, as the occipital lobe was directly affected. (See the link in "Neurological issues" for more on what the lobes do.) But he also pointed out that the temporal lobe, which controls hearing, is not too far away, so it’s possible that a bit of brain swelling affected it, too.

Dr. Mullan: “So has it gotten steadily better…

Me [about to nod]

Dr. Mullan: “…or has it plateaued?”

Me [now uncertain]: “… uhh, I’m not sure. I don’t experience it every day because I don’t always leave the house and I don’t have the TV on much. I did feel it two days ago during my class, though.”

The other issue, problems with decision-making and multi-step processes (executive functions), is more of a frontal lobe problem—and my frontal lobe wasn’t touched. However, Dr. Mullan said, executive functions involve other parts of the brain, too, and it’s also possible that my medication could be affecting it. So here’s the part of the checkup that wasn’t such great news: When the brain gets damaged, as in a stroke or other injury, it can take a while for normal functioning to return. Surgery is a type of intentional, very controlled and limited damage. For surgical patients like me who don’t have any brain tissue removed, it is assumed that we’ll recover completely and in a short timeframe. What’s the timeframe? Potentially three to six months.

I was a bit taken aback by that. It is entirely possible that I will improve before three months—fingers crossed—but if I don’t …. Well, going back to work will be quite difficult, as will parties, television, concerts, social events, graduate classes, etc. In light of these issues, he scheduled a follow-up appointment with me for mid-January, after I have a couple weeks of work under my belt, to see how I’m functioning. If the problems persist, he may refer me to a neurocognitive therapist, who will not correct the problem but help me develop work-arounds for it.

However, I am optimistic that I am actually improving daily; I just need to test it more. The day after the checkup, despite a migraine, I went for a walk, making sure to listen to music and look around at the scenery, not just the pavement. I could do it! Progress!

·       Physical fitness. I walk, sometimes up to 50 minutes, but I’m not speed-walking. Walking makes me feel so much better, both physically and mentally. However, I still have to be careful about overdoing it, as this story illustrates: Last Sunday, I was overly optimistic, pulled out my Nordic walking poles, and went for a 3+ mile stroll along the river. I turned around just after the 1.5-mile mark. At the 1.75-mile mark, I developed a disturbing, lopsided headache like my brain wanted to ooze out of the burr hole in my skull, and I became suddenly exhausted. At the 2-mile mark, I called Brian to see if he was home and could pick me up—if it wasn’t any trouble. He wasn’t home and not in a good place to drop everything, so I told him I’d be fine, I’d just take it easy and slowly make my way back home. It had taken me about 35 minutes to walk the first two miles and just as long to walk the last 1.25 with shoulders hunched, mouth hanging open, dragging the walking sticks behind me like a freshly bitten zombie victim. Lesson learned: Walk in circles, not a straight out-and-back. Also: Don’t exercise while hungry.

·       My head & hair. The hair’s growing back in all directions. The back of my head looks a bit like Eleven’s hair in season one of Stranger Things, if she’d had a lot of scabs on her head. The incision scabs appeared like magic the night of Thanksgiving, and they itch. (Don’t pick, don’t pick, don’t pick.) No swimming until there are no more scabs. (No appointments with my hairdresser either, as I don’t want to subject her to that. Can’t get a dye job for another two-three months.)

·       Driving. The day after Keppra is done (Saturday, Dec. 2^nd is the last day), I can get behind the wheel. As I sometimes get a little “stare-y” and tired right before Keppra o’clock, though, I plan to ease into driving.

·       Alcohol. Doc recommends that I wait several days after finishing the Keppra and then only try half a drink for a few days to see how that affects me. Ease into it, basically. I miss beer.

They're waiting for me.

·       Sleeping. Now that I’m off Decadron and tapering the Keppra, I’ve been able to add some more shut-eye to my daily schedule, including short afternoon naps if needed. (When I get tired now, it hits me rather suddenly.) I still wake up earlier than usual most days—usually between 4 and 5—but I like that because it gives me more time for writing or doing my MFA homework. I’m becoming a morning person! Miracles do happen. Just hoping I can turn what was a drug-induced condition into a habit.

·       And that foot thing. I have basically been pain-free for almost two weeks. I sometimes feel a tiny twinge in my arch but only after my left calf starts to feel tight. Dr. Sturm-und-Drang at Tria declared it plantar fasciitis, which usually takes months to get better and has NO CURE! My GP is skeptical about that diagnosis, given the very sudden and severe onset and, especially the very rapid recovery. My neurosurgeon is not willing to weigh in on it, as he only had six weeks of orthopedics in med school. (I appreciate the honesty!) None of his other patients have reported such a problem, so it’s definitely not brain-related, but he has heard many complaints from others about Tria, so his advice is to go to a different orthopedic clinic.

Finally, Dr. Mullan said this: “You’re a very articulate, high cognitive-functioning, self-aware person, so you’re going to be much more aware of how your brain is behaving differently. Not all my patients are, or if they are, they’re not always able to express it.” Now while this is very complimentary, especially coming from a neurosurgeon, it underscores a point I have been trying to make in this blog: One person’s experience of craniotomy for meningioma, even if it’s in the same part of the head, may be very different from another person’s because when it comes to brains, we are snowflakes. (Clearly, I don’t mean that in the way it’s been bandied about in the divisive political atmosphere to be a sneering insult; I mean it in the original sense of “we are all different.”)

One more thing: This was Dr. Mullan’s response to learning that I started this blog: “Good! More information needs to get out there.” So thank you for reading!