Tag Archives: SCDS

Vestibular Therapy Update, and Post-Op Obsessions

I have four sessions left on my first post-op PT prescription (we’re asking for more), so we did a little testing today. I’m up several points on the rating scale from where I began one week after surgery. As of today, I can:

  • Stand on one foot, both sides, for 60 seconds with eyes open
  • Stand pointed (one foot directly in front of the other, heel to toe) for 60 seconds with eyes open and closed
  • My gait has returned to normal, and I don’t wobble looking from left to right or from up to down as I stride
  • I don’t need handrails on stairs
  • I can walk over a mile
  • BUT, I cannot stand either foot with eyes closed for more than a second or two. I tip over immediately.

All in all, not bad in the balance department.

Early mornings, just after waking up, I tend to get swimmy helping the kids get ready for school. Doing computer work for more than an hour gives me a thumping headache. My skull is suddenly very sore these past two days, too, which effects my sleep — as does the tinnitus. Blah, blah, blah. 

The biggest issue is that I’m a perfectionist. Always have been. I know I’m going to have to find a way to get over this, but the hearing issue bugs me a lot psychologically. It’s not just the fact that I can’t hear out of that ear, and that what I do hear is annoying, but it’s the knowledge that something is wrong, broken, not right — that drives me crazy. It forces me to question everything. My decision to do the surgery. My choice of surgeon. The type of procedure. My recovery protocol. The smallest little thing like accidentally picking up my son after I cam home, or that time I burped and it hurt my head, or digging out the storm drains with a hoe. All of it.  Did I do it? Could I have made a better call? Why me? 

Self-pity ain’t cool. And it’s stupid to obsess over these things, I know, when much of my recovery is going well. Nothing can be done about it. But right now, for me, the obsessing is unavoidable. I’m hoping getting back to work in two weeks will push all of this back some and give me a little peace. 

I actively seek out perspective now. Like this story, about a 12 year-old boy from New Zealand who is slowly going blind and wanted to see the Celtics play while he still could.

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Good and Not as Good News

Three and a half weeks post-op, and today was a pretty big day.

I drove myself to physical therapy, then later drove myself (with my mother as chaperone) home from a visit to my surgeon, Dr. Wiet. All told, it was about 30 miles. No significant negative effects to report. It’s good to know I’ll be able to get myself around.

I went for a 1.25 mile walk today. My quads get burny, and my head gets a little bit swimmy, but it’s nothing that I can’t push through. It does make me wonder, though, if running and bike riding are in my future. Both will likely take a long build up of endurance and brain-training before they become possible. The pounding of a run, not to mention the up/down jostle, seems problematic.  I’m also left wondering, as usual, whether the dizziness I feel is from the surgery (which should improve) or from my unrepaired left side (which may not). No way to know yet.

BUT, Dr. Wiet confirmed today that he doesn’t think my left side needs surgery right now, and if it did, it would likely not be a craniotomy. My hearing on the left side is perfectly normal. I’m not willing to risk it without a serious need for surgery because the right side hearing has not improved. I thought it had, but the test results say otherwise. He doesn’t want to hit me with more steroids right now, but instead wants to wait three months before we start hearing aid discussions. The tinnitus is bad. Both my hearing and the ringing are much worse than before surgery, but the doctor reiterated today that he felt I had to do the operation because the dehiscence was so large, and because my tegmen was so compromised, that I was a brain herniation waiting to happen. I get that. But I want to hear, too, or at least not hear this high-pitched cloud of noise all the time. And yet, there is no going back. It is what it is. I seem to be one of the rare few who suffer serious hearing loss from superior canal dehiscence repair.

There are therapies, he says, for the tinnitus. And a couple of options to improve hearing, especially if more hearing comes back over time. All of those options involve hearing aids.

People in the support groups on Facebook have asked me if I think it was worth it. I guess I have to say it’s too early to tell. I don’t know what the final dizziness result is yet, and the hearing, while likely permanently damaged, is still in flux, too. I mean, avoiding a brain hernia is a very good thing, but if it weren’t for that one consideration, I probably would not do it again if I had a second chance. I think I would have tried to live with it longer and not risk my hearing.

Every case is obviously unique and people’s priorities are different. My quality of life was diminished before surgery, but I had reached a liveable plateau. How long that would have lasted is hard to say, and much of it was due to constant therapy and a daily dose of valium. Is that a sustainable lifestyle at 41 years old? I don’t know. Doesn’t matter now.

I do know I’ll be protecting my good left ear in every way possible, and doing all I can to retrain my body and brain to deal with its situation.

Oh — fun fact. Tinnitus is caused by the brain, not the ear. It’s noise the brain creates to fill in for a lack of sound. Crazy, huh? Sometimes, if I try really hard, I can quiet the tinnitus a few degrees by focusing on that ear and simply telling the noise to go away. At least I think I can!

Not that the scar is even close to being my biggest concern right now, but here it is:

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The Perfect Recovery Part III

As I’ve been made to understand it, the vestibular (balance) system is comprised of at least three separate parts. There are the three semicircular canals in either ear – anterior, superior, and posterior – that let the brain know where the head is in space. Then you have the eyes, which do the same visually, and the joints — particularly the ankles, knees and hips, which respond and adjust after the brain has processed that stimuli. The superior canal, which is likely compromised in both of my ears, negates the up/down movement in our vision when we walk and run — or drive a car. It’s like the steadicam system for the eyes. My hope is that the other two canals, and my plastic brain, can learn to adapt to whatever loss these canals have suffered and stabilize my field of vision.

It’s a good idea to not tweak an ankle when you’re trying to recover your sense of balance. I overdid it a bit on my dyna-discs — surprise! — and my now right ankle is out of whack (thanks to probably at least a dozen sprains over 41 years). Given the pressure on that joint to compensate for shaky balance already, it’s another tiny setback. It’ll be fine a few days.

I keep thinking my hearing is getting better in the right hear. I’m noticing sounds more and more, but the constant cloud of high-pitched tinnitus there makes separating sounds from each other very difficult. What I do hear and understand through that ear sounds like the radio voices of Rebel Fleet pilots as they attacked the Death Star in Star Wars. Remember that? Metallic, electric, distorted, and like it’s travelled 10 light years to reach my ear drum.

Two Weeks Post-Op: MYRINGOTOMY!

I’ve been foggy and tired the last two days. I’m not sleeping well at all, and PT takes a good bit out of me. So there’s all that, as well general recovery and the left (un-repaired) ear doing its thing now. I get dizzy when I lay flat, but that passes after a minute or two. And when I’m walking, it sometimes feels as if I’m looking through long camera lenses without the benefit of steady cam rig. It’s bouncy and distant. The ups and downs of car rides — the vertical bouncing — also throws me for a loop here and there, but is getting better.

At my two-week followup today, Dr. Wiet evaluated my hearing, which has improved slightly on the prednisone. I can’t hear well in that ear at all, but I can hear more, which is encouraging. He performed a myringotomy on the repaired ear. That means he cut a hole in the eardrum, vacuumed out the inner ear as best he could, then placed a tube in the hole to keep the ear open in hopes that it will help the remaining fluid drain and dry. I’ve had many of these procedures  before to relieve ear infections, so it was nothing new. Not pleasant, but certainly familiar. He was able to pull away a lot of fluid from the inner ear and I was relieved to feel it go.  I do notice much less pressure in my ear and skull, and I think I can hear even better, but we did the audio testing before the tube was inserted, so it’s hard to say for sure.  I’m supposed to go back in two weeks , and of course, keep pumping the roids.

My PT noticed some swelling and green coloration around my eye yesterday, so it’s possible fluid is moving around up there. My skull seems to get more sore over time, which might have to do with bone fusion and healing. She did some light massage work on my scar, some pressure and tension relief techniques, and then I did a boatload of balance work. I have to say, I always feel better right after therapy and I do look forward to it quite a bit. She says that next week we can return to the craniosacral therapy again.

Nothing more to add, really, other than I’m eager to keep finding ways to retrain my brain and get back to fully functional as quickly and smoothly as possible.

Writing, Rehab and Ego Subversion

When you’ve run and ridden in races across hundreds of miles, your brain doesn’t forget what you’re supposed to be able to do. It’s like this: once you’ve run a marathon, no matter how out of shape you are, a three mile run doesn’t sound like a big deal, even if you’re in no condition to do it at the moment. I love how the human mind does that. We adjust to scale and scope based on our experiences. Tasks don’t seem so hard when we know we’ve done harder things. And yet, that creates another problem. An Ego problem. And that’s where I struggle with rehab.

After my first full vestibular rehab session yesterday with Jennifer, I’m really sore, tight, and tired (though naturally, I repeated the whole workout this morning at 6:30 AM).  One-leg stands, walking on tip-toes and heels, cross-stepping: all that stuff is crucial to the recovery of my balance, and it makes me tired, and yet it is nothing like racing 100 miles on a bike over hill and dale in Kentucky. I’m clearly struggling with scope and scale.

So it’s medicine time.  I teach my writing students to swallow their egos in an effort to make the best product they possibly can at this moment in time. I think what holds for writing also holds for rehab. I have to learn to do the work I can do right now with an eye toward where I’m going, and think less about where I’ve been.

Dyna-Discs: the angels and devils of my rehab.

Dyna-Discs: the angels and devils of my rehab.

Finding Perspective in a Spinning Room

Far more trivial things have kept me from writing than trying to keep focused on a spinning computer screen. So, in that one small way this post is a victory.

I’m day five post-op, and after a brief fentanyl-induced hospital honeymoon, things have gotten a bit tougher, despite the fact that I’m thrilled to be home.

I play this game called “Broken Robot”with the kids. (It has nothing to do with JJ Abrams, who, as you know, has a robot who is bad.) As the name of the game suggests, I act like a robot in need of repair, and the kids set about trying to fix my ailments with their toy tools. In the game, I walk stiffly and mechanically when they eventually get me up and running, and that’s exactly what I look like now. Every step is slow, carefully considered, and without much of a stride. My head swivels slowly on badly rusted joints, and I can only hear out of one side of my head, so I take my time turning and try to position myself as best I can to hear. Evidently my ear canal is packed right now. I get that out Thursday and we’ll know a little more about my hearing then.

My brain senses movement that is not real because my inputs have changed, as Dr. Wiet told me, and it’s trying to decipher how to process this new information. I had powerful pulsating tinnitus that would make my field of vision bounce as well, but it seems the steroids have begun to tamp that down quite a bit in only one day. I also no longer feel the world tilt sideways when I burp or yawn, likely due to reduced swelling. Steroids rule! In its place, I hear chimes. Like someone has set a Casio keyboard to the organ setting, and is softly pressing one upper-register note after another. “Beeeeee.” Boooo.” Baaaaa.” It kind of sounds like the opening notes of the original STAR TREK show, but unfortunately, never in the right order.

[EDITOR’S NOTE: Day 6 Begins Here. Writing the above wiped me out. iPads and iPhones seem easier to my eyes than the laptop.]

I believe the unmasking of symptoms in my left ear has begun. My chewing is annoyingly loud, my voice sounds like it would playing out of a speaker, and I seem to be very sound sensitive. I had to go to bed and lay in the dark last night, because the noise and activity of a family dinner was bit too much to bear and made me nauseous. I already know I have a superior canal dehiscence on that side, and we hope that once my right side reaches its optimum level, it will be able to compensate for the left. But only time will tell if this whole process is a rinse and repeat.

I do better in the quiet, when I’m still, and generally later in the day. Last night I slept on my stitches without a problem and rested well. I had taken a valium as ordered by Dr. Wiet, but given the compromised state of my vestibular system, I think it left me too impaired, so I skipped it today and feel much better. Pain has never really been a problem. Actually, the worst pain came from the pin holes left across my skull from the device they use to hold the head in place in surgery. I get by on one or two regular tylenol a day at most.

I’m looking forward to beginning vestibular therapy again tomorrow with Jennifer. I’d say I’m significantly worse right now than I was at the onset of my symptoms in July, but it is of course only six days post-craniotomy! I’m not a patient patient, but I suppose a broken brain is a bit more complicated of a thing to heal than a broken bone, no?

Thank you all for for the follows and comments. I hope to respond to each of you when I am able.

Day Three Post-op

So it’s me again. This is Brad.

I think I’m improving at a pretty steady rate, though the tinnitus is constant, loud, and sometimes I get an oscillopsia effect with it where the walls seem to pulse. Also, there is is some spinning vertigo when I transition to fast. Things seem to be worse in the morning and improve as the day goes on.

Dr. Wiet is going to visit me tomorrow around 1, and hopefully I’ll be released. Dressing is supposed to come off today. He has such an incredible reputation here, and I can tell you, as a guy who has been some kind of sick most of his life, he is the kindest, most gentle and reassuring doctor I’ve ever encountered. I had a pre-craniotomy “moment” in pre-op, and he held his hand on my shoulder the entire time we spoke. If you are suffering from SCDS and can get to Chicago, he should be your man.

My wife, my mom, our friend Kevin — it’s been nonstop work for them keeping life working for the kids and me, and I’m so grateful.

I shaved my face today. I can walk easier. But my muscles are tight and my feet hurt from being in bed so much, which adds a bit to the instability.

I took two tylenol yesterday, but the pain is no real issue at all. Just dealing with finding equilibrium and the noise in my head have been the biggest challenge. Will post pictures later.

It’s all going as well as can be expected. The nurses and PT staff are working me as hard as they can.