Tag Archives: Craniotomy

One Year Anniversary

A year ago at this time I was in intensive care. The memories I have of surgery day are flickers. The shutter on the camera was closed more than it was open that day, but I know I cried before going under. It wasn’t panic, or even fear, just a release. They gave me an early dose of sedative because my heart rate spiked after my head was shaved. They told us that Tina (my wife) could go with me to preop, but then a surly nurse pulled me a way and made her stay behind. I went out. I went under. And when I awoke things were irrevocably different. But then again, they already were.

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I’m hoping to direct a film this summer wherein the protagonist is post-op from a brain surgery not unlike mine. I can’t write a script about superior canal dehiscence syndrome. No one would understand. It’s too obscure. So in the movie, the hero is clubbed on the head in a mugging. I want it to be violent and sudden — because even though my symptoms didn’t originate from blunt force trauma, they came on suddenly and pervasively, and I certainly felt as if I had been mugged. (Still do.) So, life was different already, and it would never be the same with or without surgery. My stamina was vastly diminished. My cognition delayed. My ability to handle stress was nonexistent. I was, in every way, out of balance. I still debate which doctor I should have chosen, and which procedure. Occasionally I’m still angry about it all — both the disease and the loss of my hearing. But I have to move past that.

Eight months later here I am. I can’t run — or at least I’m still too anxious to try — so I’m heavier than I want to be. I also can’t hear as well as before, and I still notice some cognitive processing glitches once in a while. But here’s the thing — I’m better. We say “better” sometimes and people think “cured.” I’m not cured. I’m better. And I’m encouraged enough to think I might keep getting better. I live with my health in the moment right now. I constantly do system checks. I’m always analyzing how I feel and trying to stay in the Goldilocks Zone when I’m feeling good, and I try not to do anything that might make me feel bad.  Last weekend was a huge milestone for me. I directed a short film. For those of you not in the industry, directing takes everything you have. Concentration, focus, stamina, and the ability to inspire, encourage, and motivate others constantly. Not a great job for SCDS sufferers to undertake. While I had a couple of shaky moments, I held up. In fact, I think I did much more than that — I thrived. I was thrilled with every aspect of the shoot, but privately, I was just excited that I made it through without falling apart, and that I did my job. It’s been five days since we wrapped, and I’m tired. Really tired. But hey, I’m not DIZZY, and while I still have mental lapses (like forgetting to take the laundry bin upstairs thirty seconds after my wife asks me to), I’m not FOGGY. I’ll take it. I’ve been super productive of late, but I’ve had to learn how to live like a cell phone. I must calculate how much battery power I can afford to burn, and how much time it will take me to recharge. That’s not back to normal, it’s not cured, but it’s way better! And better is good.

photo by Brian Zahm  www.bzahm.com

GAMICONOCRON SHOOT photo by Brian Zahm

Dr. Wiet recently did more vestibular testing on me through Dr. Hain’s office to see what function remains in my balance system, but I’m fairly certain my operated ear is still sending bad signals to my brain. He noted that the cap moved from it’s original spot over my hole, but he believes the hole itself is still plugged. He thinks a labrynthectomy is an option — removing everything from the inside of that ear, but I’m not cool with that right now. It’s another super-invasive surgery, and I’d rather just live with the status quo. He gave me a trial prescription of betahistine (Serc), which has actually helped me. It’s an expensive compounded drug, but I feel like there is much less swelling and pressure in my head when I take it, which likely indicates I was/am dealing with secondary endolymphatic hydrops or meniere’s — both of which could have been caused or exacerbated by surgery.  In combination with the diuretic I take once a day, it seems to have abated a lot of my symptoms.

So that’s it from one year out. I’m not sure what I’d do given the option to go back. My gut tells me I would have still ended up having surgery by now. I feel like it was the right thing to do and that, absent some unexpected collateral damage, it’s been a success. I do know one thing for certain, though. I would not look forward to the recovery again. Physical therapy, cognitive therapy, cranial-sacral therapy, chiropractor —  it as a full time job. Maybe it will be again someday, I hope not, but for now I’m focusing on being the best me I can be in this moment.

Thanks for your support.

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Track and Field

Hello all,

When I first joined support groups on Facebook, I’d panic at every side effect or bad outcome I read about, when it came to Superior Canal Dehiscence surgery. A wise woman in one of those groups told me to remember that all of the folks with good outcomes had moved on with their lives, and didn’t have time to be checking the boards all f the time. That made sense to me, but only about two weeks ago.

I’ve been back at work for three weeks and feel like I’m tuning in much better than before, and getting stronger. I’m not to where I was this time last year before my symptoms began, but I’m getting through my days fairly well now, and my work days on campus are quite active and stimulating — physically and mentally.  I must also say, that for reasons unrelated to SCDS, my last two weeks have been emotionally stressful, and my response to that stress is drastically improved from the worst days of my symptoms.

The best news is this. I had to teach my daughter to ride her bike, which necessitated running along side her as she rode for brief stretches. Then, trying to keep up with her as she went around the block. If you read My SCDS story, you’ll note that I was a runner before this all went down. In fact, a month before I became severely knocked out, I finished a 5K in about 27 minutes — my best time ever. Well, that jogging with my daughter, led me to think I could run again, and I’ve started back without too many problems. I run one minute and walk three, and can cover two miles that way in under thirty minutes. My fastest mile is 13:48. I have five minutes to shave off, but I’m thrilled to be running again.

I mostly stare at the ground, but try to challenge myself and raise my head to hold the horizon every several seconds, and the bounce seems to be improving. My legs are sore, naturally, but not just from the exercise. My lower back, neck, and outside leg muscles continue to be severely stressed by my new balance situation, so I’m at the Chiropractor and message therapist at least once a week.

The dizziness still comes, but only slightly, and it’s very manageable. I’m starting to believe it’s from my unrepaired side. Two milligrams of Valium each night before bed help with that. My balance is good. I’m no late-life gymnast, but I can walk a balance beam front to back, then do it backwards, then turn and repeat without touching the floor (most of the time).

Noisy, stimulating environments still wear me out, though. And my hearing has not improved in my repaired ear. I may never know why this happened, when so many people report better hearing post-op. Right now, I’m trying to get the most out of every day and enjoy this good period. Because with the other side unrepaired, and potentially unable to be repaired due to the possibility of complete deafness,  I can’t be sure how long it will last.

Here’s a picture of me attempting a (very short) long jump for my two kids:

 

Since I’ve Been Gone

Hey everyone.

So it’s been a while. Two weeks, in fact. I needed to take a break, I think, from writing the blog.

I had two goals when I started this — 1) to give curious, concerned friends and family one place to go to get information on my situation, and 2) to document my story for others who may be suffering from Superior Canal Dehiscence Syndrome, and considering what to do about it.

It’s hard to not feel like I’m complaining all the time. There’s a fine line between “documenting” and hosting a pity party in situations like this, and I felt like I was trending toward bitching.

I’ve realized in the past two weeks that I’m in for a roller coaster ride. Just as I was getting used to the tinnitus and severe hearing loss in my right ear, and thinking “I’m not thrilled about it, but I can deal with this,” I started to relapse into the same old symptoms. Swimmy-headedness (the medical term, not to be confused with dizziness, is “giddiness”), brain fog, fatigue, and pretty severe muscle soreness on the stabilizing muscles of my left leg. Essentially, the piriformis, hamstring, IT-Band, calf and ankle. The reason for this, I’m told, is that my left side is doing lots of work to compensation for the balance problems on my surgically repaired side — especially when I do balance exercises, which is almost constantly. So I’m laying off that for a while and going to a chiropractor, while seeking extra PT for the muscle issues.

The cognitive issues come and go. It’s hard to pin down what causes them, but they only just began about ten days ago. Is it the weather? Sinus trouble? Is it the dehiscence in my left ear? Is it the healing/damage from the surgery? Does the craniosacral therapy help or hurt? I can’t tell. I don’t know. It sucks and it’s scary. My greatest fear was to go through this traumatic surgery, suffer some kind of significant side-effect, and then learn I’m not even better than I was before. Right now, that’s seems to be the situation as best I can tell, but I’m trying to fight through it and live as normally as possible in hopes that with time it will all improve. Folks tell me the recovery can take up to a year. Folks tell me to be patient. That’s a recurring theme.

I can walk up to 2.5 miles now in about 36 minutes, I’m heading back to work on Tuesday, and while I get really tired really fast, I’m hanging in there most days. Laying down for twenty minutes helps reset and calm things down, so there will be a pillow in my office going forward. I continue to see my fantastic vestibular therapist, who is now working with me to steady my vision while walking — so my field of view doesn’t bounce quite as much. It’s interesting work.

So, that’s where I am. A bit of good news creatively and professionally have lifted my spirits, as has the success of my Kentucky Wildcats in the NCAA tournament. I’m going to try to get back to writing here more, and also buckling into the SCDS documentary I’ve started.

Thanks for reading!

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.

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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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.

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.