my head is broken, time to fix it

Here we go again! Next week I’m having major surgery on my inner ear. It’s broken fairly bad in a way that’s hard to understand. I’ve been through this before when I had surgery on my other ear four years ago, though the procedure has changed somewhat. I’m writing this as the first in a series of blog posts to help people understand what’s going on.

What’s Wrong With You?

In case you’re new to my ear problems, I have a disorder called superior semicircular canal dehiscence syndrome. In short, this means a bone inside my inner ear is broken, and the result is that I hear everything going on inside my head. I can hear my eyes move back and forth, I can hear my heartbeat, I can my neck bones and cartilage discs move around, I can hear fluids moving around inside my brain cavity. And worst of all, when I walk the impact of each foot hitting the ground sounds like a bass drum being hit right next to me. When I talk, the sound of my voice is amplified inside my head and sounds like a punk singer shouting into a microphone plugged into a PA with a blown speaker.

How Did This Happen?

Scientists don’t know why, but some small percentage of people are born with unusually thin bones separating their brain cavity and their inner ear. For some of those people, it’s never an issue, but for others – like me – the thin ear eventually breaks open either due to impact or age. In my case, I first noticed the problem about 20 years ago after an unusually strenuous weight lifting session, and then a few years later it escalated when I was doing an inversion pose in a yoga class. As my friend Patrick Sheridan loves to say, I’m the only person around who needs brain surgery because of a yoga accident.

Oh My God, How Do You Stand It?

Most people who have SCDS have crippling vertigo and other balance problems. Fortunately, my balance problems are very mild in comparison, so you’ve probably never seen me staggering when I walk or puking from dizziness, but if you’re really observant you may have noticed I almost always use the handrail when I go up or down stairs.

My major complaint isn’t balance problems but the hearing problems I described above. This is why I don’t stay at live music shows for very long when I do go, and why I avoid loud places like busy restaurants and clubs, and why I talk so quietly that people sometimes have a hard time understanding me.

My right ear was originally the worst of the two, which is why I had it operated on first. After that surgery (which was totally successful), my plan was to put off having surgery on the left side for as long as I could stand it. The treatment of SCDS is still an evolving science, and every year I wait is another year that surgeons improve the repair procedures. But things really started to deteriorate in the left ear last year to the point where I planned to get surgery in September 2012. However, due to other complications in my life I postponed it until September 2013 and then again until November 2013.

Now I’m scheduled for surgery on Thursday November 7, 2013 with Dr. Gerard Gianoli at the North Oaks Medical Center in Hammond, Louisiana.

What Are They Going To Do?

WARNING: This is a little gory, so if you’re freaked out easily skip ahead and just know that there is a surgical procedure that will probably fix my problem.

To fix this requires surgery. The bone never grows back on its own, and no combination of medications will make the symptoms go away. Thursday morning, they’ll knock me out with general anesthesia, and then shave my head. Then the surgeon will drill one hole into the area of my inner ear through the mastoid bone (that’s the big bump you can feel right behind your ear). This is called the “trans-mastoid approach”. Through this access hole, he will carve out some room to work inside my skull, and then he will patch over the dehiscence (“dehiscence” just means rupture or opening) with bone cement that should form a patch.

Then he’s going to cut my eardrum out and go into the middle ear through the ear canal, where he will reinforce what are called the round window and oval window. Based on his experience, people who live with SCDS for a while have weakened window membranes because of the extra stress that’s put on them. So as long as he’s in there, he’ll reinforce them so they’re less likely to rupture in the future.

He’ll pack the ear with some gel foam, which will protect everything while it heals, sew my eardrum back on, patch the hole behind my ear, and suture that closed.

How Long Will This Take?

I’ll be in surgery for about 3 hours, and then recover in the hospital. If things go well, he will discharge me in less than 24 hours. Otherwise, they’ll keep me overnight or longer for observation. As an aside, when I had my right ear fixed, I had to stay in the ICU overnight and then a regular hospital room for a second night. So this newer procedure is much less invasive.

Beth and I will stay in Louisiana for a week after the surgery. I’ll be confined to bed rest for the first two or three days, and then after that I can start going for short walks as tolerated. I have a one week followup appointment with the surgeon, and if he’s happy then we will fly back to Colorado.

Then I’ll do the rest of my recovery at home in Boulder. I won’t be able to work (or drive) for a while, so I’ll be on medical leave from my job at Oracle while Beth continues to take care of me. I’m not allowed to lift more than 10 pounds for 6 weeks, not allowed to bend at the waist, not allowed to do anything strenuous, etc.

I’m hoping to return to work after a month, or maybe even less. That’s about how long I was out last time, but there are two other reasons to get back to work ASAP. First, the medical leave is unpaid. Second, if I’m out longer than 30 days, we have to switch to COBRA, which means our health insurance premiums will double or triple.

What Can I Do To Help?

If you’re still reading this, thank you! I’m sure most people have tuned out by now. I’m going to get really bored during recovery from this thing, and I won’t be able to get out much. So if you want to come by to visit, that would be awesome.

Beth is an awesome caregiver, but she could also use a break once in a while. So we’d both love for you to come by our place and chat with me to give her a chance to get away for a while, go shopping, have some “me time”, or whatever. Just keep in mind I’ll be deaf in my left ear and may tire easily while my body is healing.

If you aren’t in the Boulder area, send me an email or call me (don’t be surprised if I put you on speaker phone).

Or lastly, you can just stay tuned here on my blog for more updates and leave a comment once in a while.

Where Can I Learn More?

If you click this link, you’ll see all my posts about my ear problems, including my blog posts about my first surgery.

Speaking of which, I wrote what is probably the most extensive journal about pre-surgery, surgery, and recovery related to SCDS ever put online. That’s on the SCDS Support website. If you’re reading this because you have SCDS, think you might have SCDS, or are supporting a loved one who has SCDS, you should join the site. If you’re  a member of SCDSsupport.org, here’s the journal of my first surgery and here’s the journal of my second surgery.

Here is the Wikipedia article on SCDS, which is pretty good: http://en.wikipedia.org/wiki/Superior_semicircular_canal_dehiscence_syndrome

Next stop: Louis Armstrong New Orleans International Airport