Monthly Archives: December 2013

Emotional Roller Coaster of Healing

Up and down, up and down. Healing after a major surgery is an emotional roller coaster. One day I feel bad but I cling to optimism. Another day I feel bad and I mope. A different day I am happy and feel healthy. Then there are days when no matter what I feel like physically I feel trapped by the things I can’t do. It’s oddly the worst on days when I feel well because any activity beyond the basics reminds me I am still on the mend.

Just to be clear, I am happy, optimistic, grateful, blessed, and healing quickly. I also feel whiny.

I want to hop in my car and DRIVE. Remember how I used to do spontaneous road trips? I want to do that again. I don’t want to wait six months. I want to do it NOW.

I want to fill my calendar and DO STUFF. Yesterday I filled up my calendar with “potential” things and it was exhausting and I didn’t even make it to music or crafts. There are dance performances, theater, book lectures, book clubs, coding meetups, events all over town I want to attend.

I want to do stuff with PEOPLE. Not just people who have cars and are amazing and will come get me on a strange day and take me to Zell’s for lunch. Definitely those people but also harder to get to people. People who live further out or have bad transportation. People who are interesting but you have to wrangle out of their introverted dens. People who can’t make plans but can be kidnapped for road trips at a moment’s notice. All my people. OK, maybe Donna is right, maybe I could be an extrovert.

I want to go hiking in the woods. I want to rearrange my bedroom. Again. I want to pick up heavy boxes and not have this weird pressure pain in my head. I want to do some crafts that involve hot wax or a soldering kit and could lead to horrible burns if I’m not in top form. I want to cook every other night like I used to. I want my husband to look less tired.

I want to be done with this and do the things I love. And optimism can go jump in a well, I want it NOW.

Signed, cabin fever mixed with soppy gratitude to Allen & Laura for coming to take me outside today.

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Progress

Last night I was laying on my left side (which is every night because laying on my surgery side is achy) and Isaiah said something and I heard him. Actually heard him and clearly which with Isaiah is a miracle as he’s from Maine. It’s still foggy through that ear, muted, less than left but hey! I had an improvement! A noticeable improvement.

Clearer mind is something I’ve had since the start. The post-surgery deafness is nearly gone. My balance is also much improved. Any autophony I experience is heartbeat when exercising too much and a little bit of my own voice (I only know this because I can compare left and right ear sounds. Dizziness is fading as well and my suture is pretty much healed.

It’s like the other day’s depression was a hill I just had to make it over to get to a beautiful sunny field.

To moderate the happy it’s important to note that I am horribly out of shape and every exercise I perform or therapy I undergo will make my symptoms temporarily worse but let’s all ignore that for now.

Progress has been made. Go Dr Wackym! Good surgery, high five!

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Post-Opiate Melancholy

I understand there are people who go through horrible withdrawals when stopping pain killers. I am very glad not to be one of those people. I am melancholy though and I’m pretty sure I can tie it directly to the switch from Norco (happy opiate) to Tylenol (plain old not opiate). I accept the melancholy and it rolls over me. I am a stone in the riverbed. More posts when I feel like it.

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A Walk Around the Block

Three weeks ago today I had a middle fossa craniotomy to fix my superior canal dehiscence. The three week marker means that today I got to go for a walk, a real walk, not walking to the car or walking a little in the store while my husband dashes about shopping, a Real Walk.

I love walks. I like to call them constitutionals like I’m a grand Victorian dam. Isaiah calls them “walksies” because the level of enthusiasm I show for walks is on par with the level of enthusiasm a puppy would show. “Is it time for walksies?” YES YES YES

This enthusiasm was present before I started having health problems. It has hit an almost zen like mighty yawp of howling delight post health problems.

A lot of other fantastic things happened today. There were presents great and surprising. Yesterday evening was pretty awesome too. Hopefully I’ll write about all the other wonderful things in my life at some point. I have a lot of gratitude to express. Right now though I am just basking in the afterglow of having gone on a walk.

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Home Alone for Three Hours

My mom left for home at noon today. I know it sounds odd but she is a Jehovah’s Witness and I am not. We agreed that she should have some peace and I should blare my Christmas music and that these things were best done in different towns.

I have been home alone for three hours and I have to admit I have not blared any music at all. I simply listen to the strange quiet of an empty house. Yeah, I have two cats but even they are being mellow today. I’ve surfed the internet and reheated the potato-cheddar-beer soup Isaiah made for me last night for lunch today.

It was amazingly delightful to have Mom up helping take care of me. It is also very nice to have the house to myself. This is the longest period I’ve been alone for three weeks since a few days before the surgery. Foreign feeling but good.

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Pre-Surgery Task Lists vs Reality

Now that I have finished the dreaded deep analysis called How I am Doing I started to overhaul this site to be more about whatever interests me and less focused on the single topic of my illness. The SCDS section I created will always be there as will the related content but now that I’m used to writing a lot online again I am beginning to want to write about random topics that interest me and hopefully other people as well.

Part of preparing to shift the focus of the site is archiving the pages. Not hiding anything but organizing and putting little snippets on pages explaining how they worked or didn’t work in the overall scheme of healing up.

A lot of the task lists (See Food Tidings) seemed so reasonable at the time. A lot did not get done or got half done. You’d think between my husband, my friends, my family, and myself that these things would have been a breeze. I want to talk a little about why it’s not a breeze and also what might be a solution.

What goes wrong?

Getting things done when ill is not a breeze even with a supportive community because:

  •   Illness takes spoons. Read the article that links to. It has been a vital part of conversations about illness since it was written.
  • Your spouse/life partner/key caregiver is exhausted. Isaiah has been doing all the household chores for two years while working and taking care of me. Sure taking care of me was not at the level that taking care of some sick people is but it is still emotionally draining. By the time it is time to take action (like surgery) your spouse/life partner/key caregiver is either going to be confused (because they’ve never gone through something like this before) or exhausted (because they have been going through this too long). They will continue to keep the ship afloat. Be understanding. Extra tasks may not be for your person. If they do pull off extra tasks they are a super hero and deserve roses and gushy cards.
  • Your friends, family, and extended people need instructions. Giving instructions is exhausting and sometimes confusing. They can only help as much as you can describe the help you need. They also all have lives of their own.

What is a possible solution?

You need a compassionate bully. Find that bossypants in your life who runs roughshod over everything but is still endearing in enough ways you keep them around and say “oh that’s just how they are.” I’m like this when I’m not sick. I get impatient when others can’t make decisions or agree on times and will sometimes simply say “Ok, enough discussion, we are seeing Hunger Games at 2pm at Cinema 10. Anyone who can’t make it will have to make other plans.” This is embarrassing to admit but imagine what this person could do organizing a food calendar!

Get in touch with your bossypants person and ask if they have some free time. Ask well in advance if possible as this person has the next two to three months planned out. Unless they love you lots they psychologically need to stick to their plans and those plans are likely to already include caregiving for others, potentially sick cousins or children or other people you have to admit have priority over you. Don’t get stressed over the “no” just look for your next bossypants.

Tell them you value their skills, explain you are strapped for cash (odds are you are) but would love to have them over to dinner (which your primary caregiver already has under control) and would set up some sort of trade for when you’re feeling better for the use of their skills. Maybe you quilt, maybe you knit, maybe you make bamboo chopping boards or websites. Arrange a pay back. Also know that this is a bond you are creating with your bossypants. They will be in your life for years after. It will be worth it. If it isn’t don’t ask.

There. To finish up I want to say I listened to the book BossyPants by Tina Fey in audiobook format with her as the narrator a few years back and highly recommend it. I really also need to talk to Amazon about that thing where you get a few pennies when you link to stuff because I love to link to stuff. Do they still do that??? Edit: They DO!

Categories: books, SCDS, surgery recovery, websites | 1 Comment

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:
Pirate helps with photographing medical documents

Categories: SCDS, surgery recovery, symptoms | 7 Comments

A little randomness

I think I’ve been trying too hard to essentially write a dissertation on my experiences since my surgery. Sure in small bits but the list of subjects I want to write on and the structure is just too demanding for my current state of mind. Even my gratitude post which I feel welling up inside me is just too long because my people have been too fabulous for words or a short list.

This week overflows with peace. The pain from my surgery is fading and the pain from presurgery is missing. I’m not running laps but I am overjoyed. I have to remind myself to rest. That’s so different than struggling to stay awake.

The deep thoughts are flowing too. I’m contemplating how a person is made up of thoughts, appearances, words, perceptions, actions, feelings, works, dreams, memories, environments, and physical states. The reason for the plural on all of those relates to the fact that all of these things change over time, from moment to moment as well as from decade to decade. Some feelings come, go, and come back again. Same for every thing else on that list though environments teaches the lesson that even though you may go back to a place the changes over time may make it no longer the same environment. Perhaps then the emotion, such as love, fades and reblossoms but is never exactly the same again, simply similar enough to be grouped together.

Having defined the categories of a person the next step for me involves exploring what my thoughts, appearances, words, perceptions, actions, feelings, works, dreams, memories, environments, and physical states are made up of. This involves a light look over of the past with some particular focus on the past two years, strong focus on the present, and plans for my future person and the traits I desire for myself. An easy example: My physical state was illness, I am recuperating, I plan to be active and healthy.

The posts should be more frequent again now that I have decided to give myself free reign regarding topics.

And look here’s our kitten exploring the possibilities of wearing makeup with me:
Pirate with makeup on her nose
Pirate with makeup on her nose

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Tired

I had plans to write some wonderful and extensive things to mark two weeks post surgery. Instead I tried to do too much (visit some friends, make some phone calls) and am done with today. Back to staying in bed 90% of the time.

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Cleaning Mental House

There are still a good number of posts to write about SCDS, surgery, symptoms, recovery, etc. I am already ready to start turning this domain back into a non-medical personal blog and brochure site. (For those who haven’t heard the term, a brochure site has pages with fairly non interactive information much like a brochure.) I plan to keep the SCDS section but expand out my writing to include thoughts, opinions, tips, whatnot, we’ll see.

Expect to see a few changes but hopefully more posts as well. Less than two weeks out from surgery though and I still get tired pretty quickly. Most of my energy is spent on healing broken skull bones and relearning how to walk with my improved superior canal.

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