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 otology.org 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.

Pre-Op

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: