A year ago today I had a middle fossa craniotomy to fix a tiny hole in my head called superior canal dehiscence. It was one of the smartest decisions of my life. After the surgery I wrote a post about the symptoms I had had and the symptoms that still lingered less than a month after surgery. Given the anniversary I thought I’d do another post on symptoms.
This was the original list, now with notes of how I’m doing a year later.
Pulse-synchronous oscillopsia. (The little dot in my eye that goes ping ping ping or ponk ponk ponk.): Gone.
Hyperacusis, over sensitivity to sound: Gone. My husband is shocked at the amount of noise I tolerate now.
Low-frequency conductive hearing loss: Gone.
Headache/migraine: The old headache is gone. Sometimes the bone aches when the weather pressure changes. I have a friend who broke his wrist who has the same problem. Bone heals slowly.
Autophony: Gone. SO weird that my voice only exists outside my head!
Vertigo/Nausea: I still get dizzy if I overdo the walking while moving my head but nausea and falling down and bumping into things all gone.
Ear Fullness: My ear still feels funny like there’s something in it but only when the weather pressure is up and not in that airplane taking off with a headcold way that it did before.
Brain Fog: Still gone!!!!
Happy days and eternal thanks to Dr Wackym in Portland who fixed my head.
June 6 was my six months post-op date and I didn’t post. I feel so much better that having had brain surgery feels like it could have never happened. Except for the spot on my head with no nerves, the twinge in my skull when the weather changes, and the occasional bit of buzzing or ringing in my ear. So I can feel I had surgery but meanwhile I just feel wholer than I did before.
I also feel more relaxed, less anxious. I try to get to the gym twice a week, am getting to work regularly with sick days only for when I have a normal sort of flu or cold, and am thinking very clearly. I’m not as productive as I dreamed I would be. Instead I find myself thinking about who I feel like now that my head is all healed up. Not that I am a different person from before my surgery. It’s just I feel more capable of doing more in a slow and graceful way. I am also out of the habit of doing more and am slowly building up my stamina for life. Still taking long naps on weekends but not as often.
What next? Camping. Road trips. Building up friendships.
I’ve decided that Friday nights and Saturdays are going to be the days I push hard at exercise and balance work. Sunday will be a recover day and I’ll push lightly through the week (keeping in mind that I need to make it through work days). Just an idea. Reality will tell.
When SCDS weighed me down I worked hard to make it through my work days and create quality code. (Hi, my name is Rebekah and I am a computer programmer.) The social side of work fell through the cracks. I still talked to my coworkers and maintained good relationships but I didn’t really pay attention to them. That sounds kind of awful but when your head is full of pain it creates a fog that is the struggle of the day and there is little room left over for little things like learning the names of the people you talk to in the break room.
Now that surgery is over and I am feeling more aware I realized I talk to a lot of people who know (and seem to like me) and I have no idea what their names are. I’ve been told that I can just say “still recovering from surgery, what’s your name?” but I am SO SICK of being sick and having it be a reason for me to be less. Anyway, I can hack this. So I’ll guess at a name and look up their email to see if they have a user icon that includes their face. Or ask a friend who is in on this new task. It’s actually going really well. I’m enjoying learning all these names and like all these people.
The real point is that I am SICK of being sick. I just want people to see me as healthy. I feel healthier. I don’t want crutches (or walking sticks). I want to appear normal and I’m willing to put extra effort in to do so.
(Any random coworkers that may read my blog can help by having their own face as a user icon or when we’re talking and a third person joins the conversation saying “oh hey, Bryan!” as a hint. Or feel free to tease me and ask if I know your name. It can be a game! If I get it wrong I learn a new name!)
Three months ago to the day I had a middle fossa craniotomy. I feel 80-90% better which is realistically 99% better with pickiness. Time and doing my exercises will improve me above and beyond to 100 or a 110%. My skin feels entirely new and I am sifting through what was me because I had a hole in my head compared with what is actually me. Crowds no longer bother me. I think I need to start attending music festivals. Or maybe one of those mass of people all dress up as the bunny rabbit or zombies. I have a lot of digesting to do and a lot of it is happening quietly or in conversations with friends not online. Those of you who check my blog do get this super secret reward though for the three month anniversary of my surgery: the steampunk fairy tale version of what happened that day!
An Entirely Elaborate and Fictional Account of My Surgery
The Middle Fossa Craniotomy as Done By Dr P Ashley Wackym
Told Mostly in Lies by Rebekah Golden
Many strange adventures led to the day Dr P Ashley Wackym cut open my head. Soothsayers were consulted, insurance approval required, and most importantly both he and I required preparations. For him preparations involved twenty five years of surgeries involving the cochlea, eighty of which involved the rare condition vexing me known as Superior Canal Dehiscence. For me preparations involved two dreadful months of waiting as well as a lifetime of leaping into situations so the decision, as a wise man said, felt like a “a no brainer.” Continue reading
One of my most hated symptoms of Superior Canal Dehiscence was brain fog. I still hate it most. I don’t have brain fog (except for the normal kind one gets with a bad head cold) but it turns out I live with the echo of brain fog.
The other day I participated in cognitive testing. My surgeon is working with a researcher who is researching pre and post op cognition. After my first post-op test one thing was very clear: I don’t trust my own thinking. I think a lot better. I just don’t think I think a lot better. I have fallen into the habit of assuming my brain doesn’t function well.
I have a psychosomatic brain limp.
And a head cold.
I’ve always liked the improv rule of saying “yes.” When I apply it to life in general I call it “Edie’s Rule” because my husband loves to talk about how his mother always kept a positive outlook and how she was always right about things turning out well.
Harold Ramis meant to be giving filmmaking advice here but I find it very universal.
You have to live your life with a certain blind confidence that if it’s your destiny to succeed at these things, it will happen, if you just continue to follow a straight path, to do you work as conscientiously and as creatively as you can, and to just stay open to all opportunity and experience. There’s a performing motto at Second City…to say yes instead of no. It’s actually an improvisational rule…It’s about supporting the other person. And the corollary to that is if you concentrate on making other people look good, then we all have the potential to look good. If you’re just worried about yourself—How am I doing? How am I doing?—which is kind of a refrain in Hollywood, you know, people are desperately trying to make their careers in isolation, independent of everyone around them.
Since my vestibular rehabilitation (relearning balance) started I’ve had what I like to call “getting better headaches” and the blues associated with slow improvement compared to magical unicorn healing. (Magical unicorn healing is that belief that a pill or a surgery will “fix it” without any effort on the sick person’s part.) Sometimes I even feel oppressed by my own inability to think clearly.
I hate not thinking clearly. It’s particularly hard when I know my work is almost entirely brain based. Today as I walked to work after my balancing appointment I had a long conversation with myself and came to this conclusion: I may not be the sharpest crayon in the box but I can be there, handy and helpful and hard working. So that’s my goal. Even on days when I feel like I’ve taken two steps back on my way going forward I can still be Handy, Helpful, and Hard Working. I can say “Yes.”
Besides all that I love the part where Harold Ramis says “And the corollary to that is if you concentrate on making other people look good, then we all have the potential to look good.” It’s really worth repeating. I may feel off but is it really about me or is it about we? I think it’s about we, we the group I work with, we the company, we my husband and I, we my family, we the city, we the world. Let’s all look good. Let’s all cover for each other and do as well as we can.
So there it is. Yes & We.
Today I asked what vestibular symptoms should clue me in to cancel an appointment with the vestibular rehabilitation therapist. She said, “Things like not wanting to get out of bed.”
It’s February in Oregon and the rains are in full swing. No one wants to get out of bed.
I think I need to ask my husband to turn on the full spectrum light in the morning when he leaves for work an hour before I do. My own little private sunrise.
That said I love the look of rain, the feel of rain, and the way rain brings Spring on. I wouldn’t live any where else.
And I feel a bit of the retraining my brain stabby pain from doing the tests today. People on the support group all talk about needing to do the exercises but no one discusses the stabby dull ache my skull piece is going to fall out I don’t care if it has titanium mesh to hold it in head pain. I suppose I should ask. After all the support groups are half “is it only me?” Maybe another day when I feel like managing responses. Conversations online need tending. Meanwhile ow.
UPDATE: Having the early riser in the house turn on the full spectrum light like a fake sunrise works.
Vestibular Rehabilitation Therapy involves teaching my eyes to look at objects around me. I added pictures of the exercise pages to my Flickr set SCDS Experience.
Doing the exercises gives me a new awareness of how I have used the various parts of my body to compensate for not having balancing feedback from my right ear. My muscles memorized what I thought was upright. I actually tend to lean backwards a little. My eyes tend to remain unfocused so I can have a blurry horizon line at all times. Focus on one object and it bounces around as I walk. Given the key role my eyes play in telling me how I stand that bouncing means I feel like I am bouncing and seasick. Unfocused eyes were always the best bet.
Now I can “hear” which way is down with both ears I need to reteach my brain to listen to my ears and let my eyes to act like eyes not crutches for ears. Oh, and tell my muscles to relax and behave fluidly instead of rigidly based on memorization.
I got a lecture from my vestibular rehabilitation therapist on not pushing too hard. I need to used my cane still. It provides safety in case I get overly unbalanced. It also provides a fourth source of data to help retrain my brain: touch.
Today when walking in a rare February sun break I did my best to focus on single objects while walking. Definitely an advanced course task for a beginner to take on. Still, I always did like to work ahead in courses. I just have to remember to continue doing the small tedious tasks given to me.
I recently upped the difficulty level on a video game I play a lot. I like the challenge.
A while back John Scalzi wrote about how various things effect the difficulty level of life.
A lot of people comment on how rough I’ve had it with my health lately. I agree. It has been difficult. I wouldn’t choose it and I wouldn’t wish it on anyone. The sick part was bad enough and now recovery has aspects both boring and challenging. A head cold will still wipe me out when sinus pressure meets surgery site.
If I focus on the challenging part though this whole experience becomes something interesting. What helps improve my health, what makes it worse? How can I grab back the life I want? What about life has changed such that I want to do more or less? A health scare really helps set priorities.
Going back to work exposed me to germs and got me out in the cold weather freezing my poor nose. Of course I’d catch a head cold. Sick, bored, unimaginable pain in my head. It’s very tempting to wallow in sad. I’m working very hard at staying focused on the interesting parts of getting better, the process, the stages, the moments.