It has been over two months since my inner ear surgery. I haven’t been talking about my recovery because, frankly, it’s been really frustrating. The short version is that I’m still having problems, currently exacerbated by a nasty sinus infection (which I am taking antibiotics for). But, rather than continue to whine about it, I thought I would try to put into words what the sensation is like, so that writers can present it more accurately.
Immediately after my surgery, everything was a constantly spinning tornado of nausea. Every time I opened my eyes, I was immediately nauseous, and the only thing that made things better was sleep. Honestly, most of that time was a blur (no pun intended), but I do recall everything spinning a lot. Strangely, this was the most normal part of things, because it felt like getting off of a really bad roller coaster ride or something similar.
It’s been a while since I’ve done a personal update, and since a few things have fallen into place recently, it’s a good time to update and recap.
Health: Last week I got a nasty cold that I’m still shaking off (probably due to Atlanta by Night). For a while it really ramped up my vertigo, but it seems to have died off. However, I’m still struggling with mild dizziness and headaches as I continue to get the last bits of congestion out of my head.
2) My wife is a scientist, and scientists have a very specific use for the word “theory.” Tell her that “evolution is just a theory,” and I will open betting on how long it takes her to frenzy and try to kill you.1
In both cases, these are conflicts within a word’s penumbra, or the meaning that people have put on a word that isn’t explicitly covered in it’s technical meaning. In both of these cases, it’s an example of a technical term gaining a vernacular meaning that isn’t the same as (or even at odds with) the original meaning.
Before I go into my own recovery, I just learned that Jesse Heinig is also going through some medical problems, and needs help with bills. It appears he just went through two surgeries, so I certainly wish him the best of luck and recovery, and hope that he continues to get the kind of emotional and community support that I’ve been getting.
For me, it’s close to two weeks since my surgery, and things continue to improve. At some point recently I made the switch from “I am always tired but can do short bursts of activity” to “I can move around and do some things, but I need to sit or lie down once in a while.” A checklist:
* I still have constant vertigo, but it does seem to be reduced. I can actually walk in a straight line, but I still sometimes need to use the rail on stairs, and sudden movements still make things spin for me. The vertigo pills weren’t having a noticeable impact anymore, so I’ve stopped taking them.
* My pain continues to be very low to non-existent. Once in a while my ear will ache or be sore, but I haven’t felt a need for any pain medication since shortly after the surgery.
* My hearing continues to fluctuate, but does not appear to have decreased since the surgery. Sometimes I’ll get popping or ringing in my ears for hours at a time, and how well I can hear seems to constantly change.
* I’m still on reduced physical stress. I’m not lifting anything heavy or doing anything strenuous. I’m not even going to raise that question until the vertigo goes away.
* I’m slowly getting cognition back. With everything going on, it was just really hard to think since the surgery, at least clearly. Last week a conversation would have taken a lot of energy, but now I can talk at length. Saturday I even went out to eat and had a lengthy conversation with my family. I’ve driven a few times on short trips without incident. I’ve been able to articulate some work-related concerns over email in a way that (I hope) is logical and intelligent. Today I’m going to try and outline something.
* All in all, I am better, but I am not well. The most frustrating part of any surgery like this is that there’s multiple stages to recovery: the immediate “oh my god did I survive that” stage, the “how long until I can get into an upright position” stage, and the “how long until I return to normal” stage. I’m starting that third (and most frustrating) part now, where I’m looking at what I used to be able to do on a daily basis and feeling frustrated because I can’t do it. This is also the part where I could really screw up my recovery, so I’m trying to be careful, but it’s a balance between pushing too hard and taking it too easy.
In some ways, the vertigo is helping with that as a constant reminder of “no, seriously, this is still not okay,” but I’m not going to keep sitting here and waiting. Tomorrow I’m going to try to drive into work and see how long I can sit at the office. I expect what will happen is that I’ll get up, go into work, work for a while, come home, and go back to sleep. However, it’s important for me to start getting back to something resembling my normal life routine, and being at my desk even for a short time will be a huge part of that.
I just got back from my doctor’s for the post-surgery follow-up. Let me get the bad news out of the way first: the vertigo is still ongoing, and while Dr. Alvarez suggests I take it day by day, he thinks it’s realistic to assume it’ll be another week or so before I can return to work and something resembling a normal routine. I have a follow-up in a few weeks where I can reassess my healing, see about lifting and exercise, and so on.
He also explained to me what happened during the surgery. Often I use “inner ear” to explain what’s been going on, because it’s just easier, but in reality the problem has been in my middle ear (picture provided to help explain things). As I mentioned in my previous post, the tissue grew over most of the malleus, and all of the incus and stapes. Dr. Alvarez essentially cut out all of that (as well as part of my eardrum) and replaced it with a strut that directly conducts the sound from the newly-constructed eardrum to the plate of the stapes (the “foot” of the stirrup, if you will) that connects to the inner ear proper. This was actually all in the plan.
What wasn’t in the plan is that the plate of the stapes actually fragmented during the surgery, giving him no place to anchor the strut to. He had to rebuilt that before he could attach the strut. Since that connection is what helps the inner ear regulate balance, a foreign connection to the inner ear results in the body not understanding what “balance” is until it’s all healed. Ergo, vertigo.
Now, the good news.
Dr. Alvarez (aside from being a sci-fi and fantasy geek, as I learned today) is frankly amazed at how much hearing I have now. His best-case condition for the surgery was that it would result in about -20db in hearing loss, which is pretty much where I was at beforehand. So, if healing continues at the pace it is, I could come out of this with no net hearing loss. I won’t gain any, but I may not need a hearing aid.
I’m really trying not to get too excited about that, but I may not need a hearing aid. I went from almost certain hearing loss to a noteworthy chance of none.
Further, as I remarked that I’m glad I decided to get the surgery done, he agreed. If I had decided to leave it alone, I could have developed a brain abscess. He also mentioned that the reconstruction is actually more extensive than my previous surgery, mainly because instead of trying to rebuild a few worn out bones, I had to have the entire system completely replaced.
So, while I’m naturally a little frustrated that I’m going to be laid up for another week, this is probably the best news I could have gotten. Even Dr. Alvarez seemed genuinely surprised at how well things are going. If that means I have to force myself to not push and let myself heal to make sure I maximize my chances of this amazing outcome, I will sit on the couch and snuggle with my dog for as long as it takes.
I expected to be more visible during this process. The plans of mice and men, etc. First off, I want to thank David for jumping onto the blog and letting folks know how the initial phase of things went, and for Michelle who kept people abreast of developments on Facebook.
Essentially, the surgery had complications. The cholesteatoma had actually grown to completely cover two of the three inner ear bones and part of the third, requiring a complete reconstruction of my inner ear and ear drum. Thankfully, I still didn’t need the radical procedure which involved bone saws like my right ear. Despite the complications, though, it was expected that I would wake up, get checked out, and be dismissed after an hour or so to go home.
Instead, as soon as I opened my eyes, the room titled and I immediately became violently nauseous before passing out again. This happened a few times, so I was kept overnight for observation. I vaguely remember one point where David and Michelle briefly appeared, but they tell me they stayed for several hours. Sometime in the middle of the night I was able to open my eyes without being nauseous and start keeping down liquids. The next day, the doctor came to look at me, and I was able to sit up and even walk to the bathroom without nausea, but not without vertigo. He said that I would be more comfortable at home to deal with the vertigo and dismissed me.
Now, I was surprised to learn that “vertigo” and “nausea” were distinct concepts. For me, they really have never been — if I’m getting dizzy, I’m also getting nauseous. And yet, it was true — while the ride home was a fun-filled exploration in the various kinds of vertigo one can get in a car, I didn’t actually get nauseous, and I haven’t been since. However, every time I move my head or stand up, I feel like I’m standing on the deck of a ship, albiet a ship that is in steadily calmer waters from day to day.
However, here it is nearly a week later, and I still have vertigo. For a couple of days, I couldn’t walk too far without listing and nearly falling over. Now I can handle short tasks by myself (sitting up to eat or type this blog, making myself a drink, taking a shower), but I’m easily exhausted. Around Thursday I stopped falling asleep at random after such tasks, but everything still exhausts me. Watching television is about the only activity that doesn’t take anything out of me — even reading a Beast Wars graphic novel that John The Great so wonderfully sent me took several days, because I just had to take it in several chunks. I’ve only been able to tackle my email since yesterday. Puck has been doing an excellent job in being a health pug. He has sat with my on the couch and made sure that I stayed put and don’t overexert myself. So, my recovery is going slower than expected — I have a follow-up appointment with my doctor this Tuesday, but I don’t think I’ll be heading back to work from it like I previously expected.
But I have watched a lot of Batman: The Animated Series and Avengers: Earth’s Mightiest Heroes. So there’s that.
As for my hearing, I honestly can’t say. A couple of days ago I was pretty impressed that I didn’t have to turn the volume up too high on the TV and was able to hear what David and Michelle were saying pretty well. Last night it was harder, though. From what I recall of my surgery in 2005, there was a lot of this up and down of hearing, so it’s too early to tell.
Am I frustrated? Sure. I had hoped at this point to be able to just focus on my hearing. I didn’t want to have to plan around being able to walk to the kitchen or strategically decide my reading time. But the support from my family, my friends, and my coworkers has been nothing short of amazing, and it has helped me every day. So while I haven’t been physically able to say so, I do want to thank all of you for every supportive tweet, every inquiring email, every helpful text. It really does help.
For those that don’t really care about my medical drama or who only want the short version: I have to have surgery, I (probably) won’t die, but it will likely result in some changes in my life. Oh, and I’m a little freaked out about it.
For those who have been asking questions or have generally been concerned about the random and unintentionally cryptic posts I’ve been making on various social networks, the story is quite a bit longer. Grab a drink and settle in, because this will take a bit.