The Side Effects
Expected and unexpected.
I saw my neurosurgeon this past Monday for a post-surgery follow-up appointment. Kind of wild that it has been a full four weeks.
The surgeon was pleased with the outcome. We ran through the list of side effects I'm experiencing, which are expected to improve. Of the list of things that could have happened, most didn't and I'm grateful for that.
But here's what I've still got going on –
Eye issues. This is probably the hardest to deal with. I have double vision. My left eye doesn't focus as it should and the eyelid doesn't move the way it is supposed to. I have some eye exercises I do at home (like focusing on a popsicle stick).
I was wearing an eye patch after I was discharged from inpatient rehab, but the neurosurgeon said he would prefer I wear my glasses with medical tape over the left lens. That's fine... but I could see a lot better with the eye patch and one contact lens than I can with my glasses.
At night, I have to tape my left eye shut so that I don't accidentally scratch my cornea since the eyelid doesn't close all the way. I also have to put a lot of drops in my eye since the eyelid doesn't blink like it normally would.
I can't drive, and the neurosurgeon doesn't want me driving before I see him again in October. He thinks my eye has improved since he last saw me (three weeks ago, when I was discharged from the hospital to inpatient rehab).
The physical therapist I'm seeing now thinks this is great news; he says sometimes it's hard to notice progress when it's so small, but someone who hasn't seen me for a while can provide a better assessment that yes, things are getting better.
Facial paralysis. The left side of my face feels like waking up after dental surgery. When I smile, only the dimple on the right side of my face shows because the left is "asleep" and I can't move the muscles.
It's hard to eat. I'm careful with both chewing and swallowing, and have mostly stuck to soft foods. My tongue feels like it is half asleep. I have to drink everything through a straw otherwise I'd spill on myself.
I've self-prescribed laughter to help my facial paralysis – things that would force my cheek muscles to move, so I've been watching sitcoms and finding the most ridiculous posts on Threads where the comments section is a pure roast of the original post.
Hair loss. A large chunk of my hair came out in a clump after I got home. The neurosurgeon said something about "blood vessels" to the group of residents who were trailing him during my appointment. I'd Googled hair loss when it happened, and nothing seemed concerning (admittedly, not the best source...)
So I'll have to decide if I want to cut my hair or just wait for it to grow back in and try to comb it in a way that the bald spot isn't obvious. Not a decision I need to make anytime soon.
Numbness in one finger. This is a weird one, but I have numbness in the finger on my right hand; opposite of where all of the surgery action took place. The resident I spoke to this week, plus my PCP last week both seemed very unconcerned about this — just like "Well, let's see what happens after the next couple of weeks."
It's my pointer finger, so it's hard to ignore, especially with stuff like scrolling on my phone or computer mouse.
I've thought to myself that if all other side effects eventually resolve and I'm stuck with one numb finger for the rest of my life, I'll have made out pretty good.
Weakness and fatigue. Being very tired all the time is hard for me. I can tell it's gotten better, since I used to fall asleep constantly during the day and now my naps are more planned. But I still have a fraction of the energy I did before surgery.
For example, even in the time it's taken me to write this, I can feel fatigue in my head and neck from sitting upright (without support) for so long. In the cocoon I've created in bed, I have a large pillow that I can lean against.
My parents stayed with us and helped out while I was in the hospital and post-surgery. Once we're on our own, everyone in this house is going to pitch in and help with the things I normally do (like make dinner) until I have more stamina.
Stamina is the one thing that has gotten noticeably better as time passes. I can sit upright for longer periods of time, that type of thing. I'll probably start working again within a few weeks. I write for clients and I just expect that it will take me longer between the eye issues and lack of stamina – but something I should be able to do.
It's possible that my eye issues and facial paralysis may not ever fully recover. But I expect both to get a lot better than what I have right now. And even if they don't return completely to normal, I can live with that.
Anna Burgess Yang