I’ve benefited a lot from reading others’ blog posts about these conditions/treatments. So I might as well write up my own.
Back in late 2007, I started hearing a fairly loud “whooshing” sound, in sync with my heartbeat, in my right ear. It started gradually, so I’m not sure exactly when it began, but by September or so it was bothersome enough that I went to the doctor. He took a look in my ear, didn’t see much, although it looked a little like I might have an ear infection (I’ve always been prone to those), so he gave me antibiotics. When that didn’t help at all, he sent me to an ENT.
She gave me a hearing test, and took another look at the ear, and said “well, it’s probably just age-related and loud-music-related tinnitus. You have a very slight hearing loss, although that is equal in both ears. But there’s a very small tiny chance–like no chance at all–that it could be a kind of tumor. I don’t think it’s likely, but let’s get you an MRI anyway.”
So I got the MRI, and the result of that was that the small tiny chance was the chance I had hit. I had a glomus jugulare tumor. Or a paraganglioma of the jugular foramen. Different names, same thing. These tumors are almost always benign…but I learned one thing from the whole experience, that “benign” is not the same as “harmless.” Benign is way better than malignant–the tumor wouldn’t be spreading to other parts of my body. But it was pretty big and it was still growing–and it was already partially occluding my carotid arteries, and ultimately could cause bad things like strokes and facial paralysis and an inability to swallow as it continued to grow and interfere with other structures (like the cranial nerves).
Not the worst diagnosis, but not a terrific one, and (interrupted by a bad gall bladder episode–another story entirely), I spent the spring of 2008 investigating and deciding what to do about it. My first response (and that of many of the people I talked to) was “get it out!” But that would have meant a long and complicated surgery (because of the size of the tumor and the way it had all those nerves and blood vessels wrapped up). A head and neck surgeon told me–”I could do everything perfectly–do the best surgery anyone could possibly do–and you could still wake up and be unable to swallow. Permanently. I don’t think you should have surgery for this.”
So the next option was radiation–and there were several varieties I was looking at. I was first attracted by the idea of “gamma knife” radiation, which would mean just one treatment. But the more research I did the less I felt sure that that was really going to control this tumor. I needed, if it was not going to be taken out, to be sure that it would be stopped (as sure as possible, at least).
So I had five weeks, five days a week, of radiation to my head. That was my summer of 2008. It wasn’t pleasant, but I didn’t have trouble with nausea or hair loss (as often happen) or with damage to my salivary glands or vision (which also happen, and scared me more). There was some fatigue–especially towards the end of the treatment and in the weeks right after. But basically it was a huge success–the tumor was stopped dead. Not gone, not even really shrunk (or not measurably), but killed and stopped from growing.
The worst side-effect, though, the most lasting one, was that I lost pretty much all the hearing in my right ear. The combination of the (dead) tumor itself, the scar tissue around it, and a thickening of that eardrum meant that in that ear I have about 10-20% of the hearing I should have. That makes it single-sided deafness.
We spent a year or so trying various remedies–there was a lot of fluid in the middle ear for a while, so I had a tube put in to drain that. We tried (early on) a course of steroids to reduce any inflammation in there. We waited to see if it would improve on its own. It never did.
Now, having a deaf right ear is not a disaster. The left ear works just fine. But in noisy environments (like rooms where more than one person is talking–and day-to-day life includes lots of those), having binaural hearing–two working ears–is what allows you to focus and direct your attention on the one person you need to hear and understand. I can’t do that anymore. And when someone is sitting (in a restaurant, in a meeting, in a movie, on an airplane, etc) on my bad side, unless there’s a wall on my good side for the sound to bounce into my good ear, I can’t understand what they’re saying. I have to turn my head all the way around. And I can’t locate the source of sounds, and I generally, unless I’m in a perfect listening environment (a quiet room with only one person talking to me and my head turned a little bit to aim my good ear right at the speaker), lose a bit of everything I hear. It makes me feel insecure and uncertain–sometimes confused–and understanding what’s going on around me takes work and concentration–and sometimes I’m unsuccessful even then. Certain kinds of professional (and social) interactions are just miserable for me.
It’s an invisible disability, and it’s frustrating. I feel like an idiot lots of times–saying “what?” over and over again. Or worse, trying to figure out by context or the little bit I can hear or guessing what the person is saying, and then guessing wrong, and then appearing to be even more of an idiot.
So when the doctor proposed a solution, I was very interested. Normal hearing aids would not work for this kind of deafness (the middle ear is blocked, and sounds really don’t get past the blockage, even if they’re amplified). But there was another possible solution. That solution was the “baha” (some confusion about whether that’s an acronym or a trademarked word or what–but at least at one point it stood for “bone-anchored hearing aid.”)
Ultimately, this is going to mean that a small (like the size of a small matchbook) processor on the side of my head behind my bad ear will receive all the sound that that ear should receive, and convert that sound to vibrations which will travel (through a permanent titanium implant) into the solid bone of my skull and then to my functioning, listening, cochlea and auditory nerves.
The demonstration I tried (using the device pressed against my scalp–so the vibration had to go through the skin and tissue first rather than directly into the bone) was just mind-blowing. It was truly amazing how much better I could hear, and the real thing will be even better than that.
So last week I had the first stage–a small surgery (outpatient) to peel back a little rectangle of skin, remove the hair follicles from that rectangle (hair would interfere with the connection), drill a hole in my skull (not all the way through) and put a screw in that hole. Then a small “abutment” attaches to that screw. And in a few months (after the titanium screw “osseointegrates” (a cool thing that titanium does–or that the body does with titanium–it actually becomes part of the bone so there is a complete and permanent connection), I will get the device (the BP100) which snaps on to that abutment.
I had general anesthesia. I gather that this isn’t always the way it’s done, but that’s the way my doctor did it. I had a lot of waiting in the hospital before the procedure began (about two hours), so that was a drag, and of course no food since the night before, and no anti-inflammatories so my back hurt at night so I didn’t sleep well, so I was tired and hungry and irritable during those two hours. But I woke up feeling OK, with little or no pain at the site. In fact, the worst part of it was that I was intubated during the surgery (maybe because I have asthma? I gather that they don’t always do that, either). So my throat had a deep soreness for about two days afterwards. And I felt kind of groggy and achy from the anesthesia generally for those same couple of days. The site itself hurt only very little–easily controlled with extra-strength tylenol–and even that only two or three times a day for the first few days, and just at bed time for a couple more days after that. I’ll post a picture (it’s not too gross, but only click if you can stand the sight of a little dried blood). I have a cap attached to the abutment, which holds a pink spongy bandage type thing over the wound. That’s it.
The device will snap on and off (it’s designed to–it’s not waterproof so has to come off when I shower or swim). But the screw and abutment are with me forever now. It’s a tiny enough implant, and titanium is non-reactive enough, that I shouldn’t have trouble with metal detectors at airports and so forth (although they gave me a card to carry in my wallet to explain that) and MRI’s in the future will be no problem. But I will always have a small metal bud or knob sticking out of my head behind my ear–whether there’s a processor device snapped on to it or not.
So now I have to wait a few months, let it totally heal, and get the device attached. Then I’ll post again.