Category: SCDS

Superior Canal Dehiscence Syndrome

Exactly Why I Need the ACA

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Exactly why ACA and the ability to get health insurance with pre-existing conditions matters.

In 2013 I had a craniotomy to fix a hole in my superior canal (superior canal dehiscence syndrome). Side effects of the hole include complete lack of balance, migraines, and hearing things like my eyelids pop when I blinked or brain swoosh when I turned. As my symptoms increased my ability to do anything decreased. I eventually ended up on short term disability a month before my surgery. Without that surgery I would still be on disability. With that surgery I am an active part of the community with a good job that just bought a house and a car (economy yay!).

I was on disability for three months. The month before surgery and two months after. I was able to continue insurance through Cobra ($700/person) and was paid disability wages (60% of my paycheck). Rent was about 30% of my paycheck because we were lucky. Rent in general is much higher than that. To cover both me and my spouse would have meant that all my disability wages would go to insurance and rent and some rent would be paid by my spouse. My spouse is a cook. I love him tremendously but his paycheck does not support us. Mine does. Money left over from paying insurance and rent and doctor copays and bills would not have fed us and some bills would have gone unpaid.

We sat down and talked. My husband was healthy and we decided he could live without insurance for a few months. A year later, back on health insurance, he had a heart attack. More on that later.

So we managed to scrape by, keep our apartment, not go bankrupt, get me the surgery I needed by deciding to forgo health insurance for my husband for a few months.

Let’s say this surgery did not happen in 2013. Let’s say it was happening this year. This year we could not afford to forgo health insurance for my husband. He has had a heart attack. That is a pre-existing condition. Congress is in the process of dismantling the protections offered by the Affordable Care Act. Whether they succeed or not we cannot risk my husband not having health insurance for even a moment. Then he could be denied health insurance ever after. And he would.

He has heart medicine. He has a lifetime ahead of him full of potential health risks like broken bones, the flu, another heart attack, bronchitis, my imagination is running wild but it’s not unreasonable to assume in the next 40 years he will need to see an expensive doctor.

In 2017 with ACA under attack we could not decide to budget away a few months of health insurance when times are tough.

In 2017 with ACA under attack I cannot open a small business because of the risk of missing health coverage.

In 2017 with ACA under attack if I was having that same brain surgery we would not be able to afford rent. Healing from brain surgery while homeless is impossible. We would have taken out a lot of debt, ruined my credit rating, never bought a house, declared bankruptcy which is now something employers look for in your history. My ability to get hired, get insurance would have gone down.

In 2017 my four months off for brain surgery would have been a life sentence of poverty and tax payers eventually paying for my food stamps, disability checks, and unpaid medical bills.

I know why people hate the ACA. They hate having to pay for insurance they “don’t need” and “can’t afford.” Then work on the costs!

By throwing the baby out with the bathwater Congress is screwing over a whole class of people who until recently could find ways to juggle their expenses to make health care work.

Essentially all you healthy people who “don’t need health insurance” are screwing me over because I happened to have a hole in my head.

Now don’t try to problem solve me. Don’t tell me our parents could have paid some part or we could have started a gofundme or try to fix the math so everything works out. Don’t polish this turd.

Without ACA people like me are going to go bankrupt and without health insurance people like me are not going to go to the doctor to find out why they have migraines because they can’t afford the special CT-Scan that finds a hole in their head that fixes their problem. They are going to end up on disability and after a few years of listening to their eyelids pop and their brains swish they will kill themselves. Trust me.

So call your Congressman. Tell him that you hate ACA and you’re happy to see it repealed AFTER there is a replacement plan in place that protects people with pre-exisitng conditions. Hell, why not throw in the protection against lifetime caps and the ability for parents to pay for their kids to be insured through college?

Really. Call your Congressman. We need the provisions that the ACA provides. I need them.

One Year Anniversary of Surgery

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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.

Six Months Post-Op

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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.

Learning Names

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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!)

Superior Canal Dehiscence Syndrom: Three Months Post-Op

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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 “Superior Canal Dehiscence Syndrom: Three Months Post-Op” →

Self Trust Post Brain Fog

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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.

Yes and We

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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.

Sunlight, Bed, Vestibular Symptoms

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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.

Eyes Ears Brain Feet

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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.