One Year Anniversary of Surgery

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.

Learning Names

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!)

Self Trust Post Brain Fog

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.

Sunlight, Bed, Vestibular Symptoms

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.

How I am doing

The biggest question is “How are you doing?”

I know technically the correct response is “fine” or “healing up” or some other platitude about health.

Generally I like to assume the people I know want more than platitudes. They want real information. They want data and analysis. They want to know how I am really doing which requires a long response.

The Surgery

First a recap: On December 4, 2013 I had a middle fossa craniotomy to repair my superior canal dehiscence. For a lot of information on the procedure including some very vivid pictures of one such surgery at the very bottom of the page (a few scrolls down) check out this page on which we can mostly agree needs a small website redesign but isn’t too bad for content. Other sites use some of the article but this page in particular has case studies and a lot of interesting information. DO NOT scroll past the audiology charts if you are at all squeamish.

Speaking of which I have pictures of the hole in my superior canal that Dr Wackym took during surgery which are equally gruesome/fascinating. I like to call them pictures of my brain but as Byron (coworker with history working in biomedical engineering) pointed out it’s just my dura (aka the placenta your brain lives in).

Ok. So. How am I doing? Well, obviously I feel like writing a lot, even rambly writing. My brain goes happy tick tick tick and that is GOOD.

Back to being methodical.


Prior to the surgery I had the following symptoms (the first five were part of my rush post on symptoms prior to surgery):

  1. Pulse-synchronous oscillopsia: Yep, that’s the little dot in my eye that goes ping ping ping or ponk ponk ponk except with a little dot I can see instead of a sound but what’s really the difference between dots and sounds and touches.
  2. Hyperacusis, over sensitivity to sound: Yeah. I think I’ve complained about the sound of my typing. And anything else I hear. Having this made me hate birds at the same level I used to hate my neighbor’s barky dog, the barky dog at the level of car alarms, and car alarms so much I could have cried.
  3. Low-frequency conductive hearing loss: I often wonder if it’s my hearing that’s worse or just the amount of other things I hear that make it harder to hear what’s around me. there you have it.
  4. Fatigue: Yeah. Yeah yeah yeah. Oh yeah.
  5. Headache/migraine: That was what started it all. The quest to find out why my head has been hurting since May of 2013.
  6. Autophony: hearing my feet land on the floor like the boom of a low rider with too much bass driving by, my voice sounding loud in my head and quiet to others, the pop of my eyelids when I blinked, the sound of my own pulse, the swish of my brain when I turned my head too fast.
  7. Vertigo: nausea from seasickness as a result of either myself or anything around me moving, poor balance, poor spatial orientation, at the worst right before the surgery if I tried to turn my head to look at something while walking I would stumble and looking up and down rows at the grocery store gave me intense migraine/fatigue.
  8. Ear Fullness: extremely painful sense of having water or something in my ear even though it was perfectly clean. Imagine flying with an ear infection. There were worst days and annoying days and bearable days but it was always there.
  9. Brain Fog: seriously. And it’s not just a happy haze. It is an inability to remember basic concepts, appointments, to put two and two together, to remember to turn the stove element on, to remember the stove element is on and the water is boiling and ready for Mac & Cheese to be added, not remember something said five minutes earlier. To be able to think at all. Multitasking went from second nature to completely impossible to the level where if something moved or made a sound it counted as a conflict to whatever conversation I was having.

Just last week Karen Henry in the Superior Canal Dehiscence Support Group (SCDS) on Facebook posted some great advice about approaching surgery. I’m going to put a snippet of that here for reference because of the awesomeness of the concept. For me, my brain fog was so horrifying that I don’t think I could have had this conversation but anyone with SCDS considering surgery should totally do this. They should also consider joining one or both SCDS support groups on Facebook. The other support group is called SCDS Support Group. The main difference between them is the tone and level of activity. I don’t know why there are two but I was happy to join both.

Karen’s advice:

Prior to your appointment write down your top 10 symptoms that are debilitating or bothering you. Some people may not even have 10, some may have only 1 or 2. However, write them down and rank them with 1 being the worse.

Then discuss this list with the surgeon asking which of these symptoms can be fixed, which are a maybe, which will remain the same, and which may in fact be worsened or any possible new problems which could be caused.

If I had done this mine would have been (in no particular order): brain fog, sensitivity to sound, headache/migraine, fatigue, and as things got worse the vertigo. And the feeling of ear fullness when it hit that stabbing in my head level.

Surgeon Warnings

I lent my scanner to a friend to get some old photos so I took pictures of the relevant parts. I am not typing four pages of potential post-op issues. See? I’m already saner.

The first document I’m going to share is not my favorite. It is a generic “you just had inner ear surgery” couple of pages from the hospital. It is very similar to what Dr Wackym gave me but includes some notes for people who are getting cochlear device implants aka not me. Hospital Post Surgery Potential Symptom List

Dr Wackym gave me lots of papers about the surgery but I’m choosing at this time to focus on the Post Surgery Potential Symptom List he provided. Mostly because this post is about symptoms or “how I am doing.”

I think these lists are important because they define symptoms I am now experiencing that may be as much about the surgery as SCDS.

This sounds scary to some people: “You mean you got brain surgery to fix your headache and now you have a worse headache!?!?!” It is very important to recognize that my post surgery headache is part of having had surgery and will heal. It also feels different. I want to say that again.

Post surgery symptoms are not forever. Most will heal with time. Think of it as resetting an untreated broken bone. It hurts worse and needs healing but it’s better than having that out of whack broken bone.

Per Dr Wackym’s potential symptom sheet I had neck stiffness and muscle soreness after the surgery. Some of this I blame on the requirement that I sleep with my head elevated to prevent brain swelling. It feels way too much like I’ve been sleeping on a plane for the last two and a half weeks.

I had a tiny amount of dry eye. I think it was more paranoia than anything else. Saline eye drops aren’t harmful so I just dosed a couple of times after surgery and then the feeling faded.

Temporary appearance change is the most interesting. I had very little bruising but some swelling (noticeable to others but not me.) What is really weird is how my ear is different. My left ear has always been a little pointier than the right though neither ear has ever stuck out. Now my right ear sticks out more than the left and the top is kinda folded over like a puppy with one ear down and one ear up.

There are a ton of pictures of the right side of my head on my flickr page in the SCDS Experience set and probably no one else can tell but I tell you, my ear is slouching. The weirder part? I kind of like it. I hope it stays a little slouchy. It has some real personality now.

Post-Op: 2.5 weeks

One of the things I really try to emphasize besides the whole “we all heal differently” aspect is that I am only 2.5 weeks out of surgery. I have four more days before I can begin being more active. It is far too soon to say how successful the surgery was. I have a lot of optimism. I’ll try to post again on this topic in two months and six months and a year. Activity itself could change how I’m feeling for better or worse. A lot of people have been asking though so I guess 2.5 weeks can feel like a long time with no descriptive updates.

Here is the symptom list from above with updates.

  1. Pulse-synchronous oscillopsia. (The little dot in my eye that goes ping ping ping or ponk ponk ponk.): Gone.
  2. Hyperacusis, over sensitivity to sound: Much better! Much much better! A car alarm went off 20 feet away from me and I jumped a little in surprise but not half so much as I used to PLUS it didn’t hurt my head. It was merely annnoying.
  3. Low-frequency conductive hearing loss: My hearing loss is worse. The first week after surgery I couldn’t hear out of my right ear. I still have a hard time. It is getting better though. I noticed today that I could hear my stepDad talking on the phone to my Mom when she was seated on my right and he was a tiny voice on a speaker. I didn’t get all the words and was probably aided by my left ear but I feel good. Getting better.
  4. Fatigue: I am tired and bouncy. I have a broken skull bone that is healing and that drains energy. It’s also very difficult for my husband and Mom to keep me from racing about like a toddler. So now I need to nap but want to run where before I simply napped. I would get home, go to bed, wake up for food, go back to bed, go to work and be tired all day. Now? Much much better.
  5. Headache/migraine: I have a headache that feels like someone cracked open my head. It kind of overpowers everything else head wise. Bones take 6-8 wks to heal and I will say more then. It should be noted I haven’t had any migraines since the surgery.
  6. Autophony: My foot falls don’t bother me any more. My voice still sounds a little loud but maybe I’m speaking louder? I can feel my eyelids touch when I blink but I don’t hear a popping noise. My pulse and very mild tinnitus is there but I wonder how much of that is related to residual blood from the surgery. (see Dr Wackym’s Post Surgery Potential Symptom List) This one falls into the not making any decisions until at least 4-6 wks after surgery.
  7. Vertigo/Nausea: The nausea was bad the first week and a half after surgery. Zofran (anti-nausea) is the best drug ever. Vertigo persists as I relearn how to walk but it feels different, it’s hard to explain how but it just does, and it becomes more mild when I stand up straight which I think is a good symptom. Looking forward to January and my vestibular rehabilitation therapy.
  8. Ear Fullness: Full but different. Again I believe it is residual blood from the surgery. (see Dr Wackym’s Post Surgery Potential Symptom List)
  9. Brain Fog: Gone!!!! Party party party!  Of course now I have mild aphasia because they touched my brain when they moved it out of the way but aphasia is a party next to brain fog. Mmmm, the aphasia warning must have been on a different page. Anyway it’s not an unusual side effect and is expected to fade.

Finally here is a picture of Pirate helping me take pictures of the documents:
Pirate helps with photographing medical documents

Superior Canal Dehiscence Syndrome Symptoms

Symptom list:

  • Autophony – person’s own speech or other self-generated noises (e.g. heartbeat, eye movements, creaking joints, chewing) are heard unusually loudly in the affected ear
  • Dizziness/ vertigo/ chronic disequilibrium caused by the dysfunction of the superior semicircular canal
  • Tullio phenomenon – sound-induced vertigo, disequilibrium or dizziness, nystagmus and oscillopsia
  • Pulse-synchronous oscillopsia
  • Hyperacusis – the over-sensitivity to sound
  • Low-frequency conductive hearing loss
  • A feeling of fullness in the affected ear
  • Pulsatile tinnitus
  • Brain fog
  • Fatigue
  • Headache/migraine

I struck out the things I wrote specifically about as far as I can tell. Want to get the descriptions in before December. So…

Pulse-synchronous oscillopsia. Yep, that’s the little dot in my eye that goes ping ping ping or ponk ponk ponk except with a little dot I can see instead of a sound but what’s really the difference between dots and sounds and touches.

Hyperacusis, over sensitivity to sound. Yeah. I think I’ve complained about the sound of my typing. And anything else I hear.

Low-frequency conductive hearing loss. I often wonder if it’s my hearing that’s worse or just the amount of other things I hear that make it harder to hear what’s around me. there you have it.

Fatigue. Yeah. Yeah yeah yeah. Oh yeah.

Headache/migraine. That was what started it all. The quest to find out why my head has been hurting since May of this year.

There. All symptoms written. Sorta. Mostly.

Superior Canal Dehiscence Syndrome Symptoms: Auditory

The symptom in the list is Autophony. I’m writing more generally about my auditory symptoms because today is a bad auditory symptom day. Is my typing so loud because I hear it through my fingers or because my hearing is super sensitive? I don’t know.

Noises outside my head cause feedback in my ear, make me dizzy, and sometimes makes my eye see little pulse circles.

Typing is making me sick. I have to stop.

Superior Canal Dehiscence Syndrome Symptoms: Vertigo

Vertigo is an interesting symptom. My response to vertigo is part of why the experts think my SCDS is a birth defect that became worse  in the last year (probably due to head trauma or maybe just finally bad enough to notice). When they asked me if I was dizzy I said, “what  is dizzy?”

What is dizzy? I guess the best answer  is the feeling you get when you spin in a circle long  enough. That doesn’t feel very different from  everyday for me.  I mentioned I like being on boats and the technician running the vertigo tests was surprised. What can I say? I’m an adventurer. I also like the swoopy feeling of take-off and landing on a plane. I get the best adventures from the simplest things.

Balance is something I’ve always worked hard at. I was an awkward child who strove to be graceful. I took dance and gymnastics and played baseball. I didn’t mind being the worst at things because I just wanted to do them. Later in life I practiced more dance and yoga. I developed all sorts of ways of feeling where my feet were and how my body was to memorize where it should be. It was never a sensation I felt in my ears but more an alignment of sight and muscle. Needless to say I did well enough but never excelled.

I also didn’t think this was strange. The fact that spinning in a circle made little difference to how I felt  seemed like a sign of superior balance not a sign that I was constantly imbalanced. Sure it took six years to learn to ride a bicycle without training wheels and I was constantly spraining my ankles but that was a physical weakness of some sort right?

Looking back now my whole life has rearranged itself. Those times I collapsed from exercising? Maybe my blood sugar wasn’t actually low. When I broke out in a cold sweat and had to lay down at the state fair? Maybe it was the loud crowd and the spinning rides not a strange flu that had no fever and went away with bed rest.

I’m questioning the explanations of a lifetime and I have no facts to back any of it up. It wasn’t until August 25 of this year that I got the specialized CT Scan that showed there was a hole in my inner ear.

It’s very disorienting. It changes my reality too much. So am I dizzy? Yes. I get seasick when things move around me, even little things like light reflected from a car spinning past through the window. I lean on walls and lately have even started swaying which feels like the first step towards falling.

The technician at the surgeon’s office says the tests prove I’m dizzy whether I know the word for it or not. I really appreciate that. It’s like having a thermostat to tell me if it’s cold. Sometimes it’s cold and I’m not or it’s warm and I think it’s cold. A measure is a wonderful thing.

Being dizzy, for me, is not the world spinning around me like the movies make it appear to. Instead it is me spinning inside the world.

Superior Canal Dehiscence Syndrome Symptoms: Ear Fullness

I normally catch every cold and flu. This year has been surprisingly light on “normal” sick while experiencing the “this can’t be happening” sick. I think because I’m resting up a lot and getting out a lot less.

A feeling of “fullness” in my ear is an every day portion of my SCDS symptoms. If I were a dog I would be shaking my head all the time. It feels like I have water or a cotton ball in my ear. It wasn’t until I was diagnosed and saw “a feeling of fullness in the affected ear” on the symptom list that I stopped compulsively cleaning a perfectly sparkly clean ear. Imagine a dish that appears clean but feels greasy no matter how many times you wash it.

Last night I woke up because my ear felt so full I could have sworn I was drowning. Four in the morning and completely adrift I cleaned out my ear. It didn’t help. I tried going back to sleep but kept waking up. Then I started waking up coughing. At about seven I sent a sick note to work and took some Robitussin. I slept well for a while, no more coughing, woke up around eleven and realized Robitussin is super dizzying (for someone with SCDS).

It turns out that while “there’s something in my ear” is the normal symptom there’s another level of it for SCDS with head cold. Let’s call it the “Star Trek Wrath of Khan Ceti Eel Experience.” I was tempted to link to the worm burrowing into Chekov’s ear but instead here’s a picture of Chekov knowing the worm is on it’s way there as it crawls across his face. An image search of “ceti eel” will give you all the graphic detail you need to sympathize. Or if you ever saw Wrath of Khan the only more memorable scene is Kirk screaming Khan’s name. I put forth that people focus on that scene to get the ceti eel scene out of their minds.

My ear is currently back to a feeling of fullness. More full than some days but not as bad as the four a.m. wake up.