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My Experience With Brain Surgery Recovery

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Recently, I had brain surgery. I had a non-cancerous brain tumor that was impacting a large portion of my brain.

When people ask me how I’m doing, I try to be honest but also put a positive spin on it. For example, “I’ve been better but I’m definitely healing!”

But today I’m in a lot of pain. This is so hard. I am struggling.

I’m 17 days post-op.

When I wake up in the morning, I feel very much like myself but with a headache. And then I get out of bed and see what kind of day it’s going to be. I don’t feel like I just had brain surgery until I try to do something. I don’t feel weak or out of it or dizzy or just not like myself. When I wake up in the morning, I just feel like me.

And then, every day is different. The last few days, and today, are really hard. The severed nerves are growing back and it burns and feels like lightning around my entire scalp down into my neck, shoulders and back. It feels like there’s a strap around my head and and it pulls really tightly every so often, but not constantly. I have this constant headache deep, deep, deep in my head. My doctor told me to be prepared to live with that headache for a year or two, but it will lessen over time. My hair laying on my scalp feels really heavy, but I can’t pull it back because it tugs, which is overwhelming. Forget brushing my hair or taking a shower. I’m wearing a beanie right now because the very light pressure helps a lot. There’s no predicting the nerve pain. Nerve regrowth and regeneration, and then rewiring the brain is inconsistent. And saying “inconsistent” is an quite the understatement.

I have power surges where I’m suddenly super energetic and focused and funny and I can do anything. I love these times. I’m hopeful that these power surges are a sneak peak of who I’m going to be soon. When this happens, I do kinda feel like the me that I know, the me that I was before all the chronic pain started seven or so years ago.

I have trouble swallowing solid foods, so I’m eating a ton of soup and fruit, whatever’s soft. I can speak normally, but in spurts. I can chat for an hour, but then my throat hurts a lot and I get hoarse. I’m still not making/taking phone calls. It’s just too much. I can, and want to, hang out with friends, but I can’t really plan it because my energy and pain levels aren’t consistent. I am at home with the heater on right now, and I’ve got shoes, socks, fleece pants, a sweater over a long shirt and a beanie and I’m still cold. In an hour or so, I’ll change into shorts and a tank top. I didn’t expect hot flashes, but here I am. I drop many items that I pick up with either hand. I run into walls sometimes and really just in general my coordination is terrible. Earlier today I tripped on a box and I almost fell, but I landed in a standing yoga pose instead.

My memory is awful! I’m told I ask the same question three times a day. People have to tell me the same thing over and over. I cannot keep up with what day it is or what I did yesterday or if I’ve eaten. I did a cognitive assessment at speech therapy and I did fine on the cognition part, but I failed the memory part. In general, though, I don’t have a great memory, so I just can’t make myself believe this is totally a side effect of surgery or medication. My cousin took me to the grocery store yesterday and I’m pretty sure she felt like she had a toddler with her. I’d be just standing around, confused, not sure what I was going to get, and then getting olives because I remembered we talked about olives, so that must be it. We need olives. She actually sent me to get peanut butter. What she’d actually said was that she didn’t like olives and we already have some at home anyway. I just got confused.

I did an audiogram yesterday with my regular audiologist, as I have a hearing aid in my left ear. My hearing hasn’t really changed that my much. We compared my test yesterday with my last one, and one part was a little better and one part was a little worse. So while I feel like I can’t hear anything, the audiogram indicates there’s not a substantial change. Maybe my brain is overloaded and that’s why I can’t hear anything. Maybe I’m just overwhelmed. Or maybe I’m not paying enough attention.

Day to day, my attention span is that of a gnat. It hurts to read and I can’t focus on the words in the book. Television makes my head hurt, as does my cell phone. I spend a lot of my day with my dog. I had a goal to finish my master’s program by August, but that’s extremely unlikely. And I’m ok with that. Nobody plans for a brain tumor to come along and take over your life for a few months.

One of the reasons I’m so open about what I’m going through is because it just helps me to write. Writing is therapy for me. Another is because everybody has problems, and we have to take care of each other. Maybe, by me talking about it, other people will feel encouraged or less alone, even if they don’t comment or reach out. Ask me questions about the tumor or Hashimoto’s or fibromyalgia or endometriosis or whatever else I have. Or tell me about what you’re going through. Let’s talk. Let’s go walk the dog. Let’s take care of each other. You know your secrets are safe because I won’t remember what you told me anyway.

Brain Surgery: Zero stars. Do not recommend. Recovery sucks. It will get better. It’s definitely worth all this pain and I’d do it again if I had to. But it’s really, really hard.

Getty image by Ponomariova_Maria.

Originally published: January 5, 2021
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