I had my weekly visit to the ear doctor this morning, and the tissue continues to heal as it should. There’s an area totaling about twenty to twenty-five percent of the replaced tissue that needs to finish growing in, and that’s proceeding correctly. There’s no granulation tissue or mucosa, so unless something goes wrong (which can never be ruled out in this ear), the healing should be done in a few weeks. My next appointment with him won’t be for another three weeks, the day before we go away.

Despite this good news, I’ve been experiencing a fair amount of discomfort for the last couple of weeks. I’ve been feeling pressure, tightness, heat, and some pain in the ear, up over my cheek into my temple, and down into my neck. It feels as though someone has just punched me in the side of the head. I was initially worried that this was the result of an infection somewhere deep down in the ear, but as I’ve paid more careful attention to it, I’ve been able to separate it into three different sets of sensations. There’s a clogged feeling in my ear, accompanied by decreased hearing and an intensified ringing; there’s a feeling of congestion in the sinuses on that side of my head and sometimes even in that nostril, complete with post-nasal drip; and there’s a muscular ache radiating out from the joint of that jaw. After discussing it with the doctor this morning, it looks like that’s all the result of TMJ disorder in the jaw under that ear.

Getting a clear sense of what’s happening based just on what I can feel is very difficult. The ear, nose, and throat are all interconnected, and there’s only one nerve for all of the sensation in that area, so what I feel isn’t always what’s happening. After the doctor examined everything else, which included using a scope to view my sinuses (an odd and unpleasant sensation indeed), he’s pretty certain that everything I’m feeling is the result of TMJ disorder, with the exception of the hearing issues, which should improve once the tissue’s done healing. TMJ disorder is, according to him, essentially an arthritic condition, and in this case was likely caused or at least exacerbated by his surgeries. So with the ear itself apparently safely on the road to recovery, I now begin addressing the TMJ disorder. I’ll see my dentist next Tuesday to get that process, which will likely be a biteplate to get the jaw back into the proper position, started.

Stay on Target…

I saw the ear doctor this morning for a regularly scheduled follow up (as opposed to Monday morning’s panic visit), and things still look good. We’re not entirely sure what happened over the weekend. The pain, pressure, and heat I felt seem to have been related to the occasional TMJ issue on that side, which the Alleve I’ve been taking since Monday seems to have under control. And the “weeping” may just be the result of the eczema that I have in both ears, since both ears were weeping this morning. The hot, humid weather really doesn’t help with that, but it may not be a problem.

At this point, there’s no mucosa or granulation tissue in the ear. There’s just one small area dry skin hasn’t grown over yet, and that area is smaller than it was last week. If things continue this way, it should be healed over fully soon, and I’ll be home free. I’ve decided to be optimistic enough to aspire to swimming when we’re in Provincetown next month. We’re going earlier than usual this year (the Thursday after Labor Day), so the water should be as warm as it ever gets there. For years, I’ve wanted to take a dip in the pools behind the breakwater, but haven’t been able to because it’s been too cold or I’ve had to keep my ear dry. This may just be the year.

Not Sick By Reason of Insanity

I got an appointment with my ear doctor first thing this morning. At 8:45, he was looking in my ear and telling me everything looks perfect. He said that it’s possible that two days of drops may have completely corrected whatever went wrong Friday night, though that’s unlikely. I don’t know if it’s more or less likely than things going from good to bad in three days last week.

I apologized profusely for wasting his time (though none of his other patients had shown up this morning, so I wasn’t really wasting his time), and now I’m worried that I’m becoming a hypochondriac. He didn’t seem the least bit put out, and said he completely understood my reaction given my history. We’re going to stop the drops again and check in Wednesday morning.

FAIL! Mood: Pessimistic

I got up a little before six this morning to go to the bathroom, and as I was standing there, I absently touched my left ear, discovering there the telltale crust of resurgent mucosa in my ear “weeping” (as the doctors put it) serum. This indicates that last week’s plan of leaving things to heal on their own has been decidedly unsuccessful. I tried to reach my doctor this morning, but was only able to get the doctor covering for him. After bringing her up to date, and answering repeated iterations of “Did he try…,” we decided that the best thing for now is to restart the drops (which she feels have a very low risk of causing a fungal infection) and check in with my doctor Monday.

At this point I’m guessing that he’ll have to do another surgery, the timing of which, given my upcoming vacation and the need to keep things from getting any worse until the surgery, may be tricky. And I have a new question about the drops. I wonder if, as it’s possible to develop a resistance to the drops, it’s also possible to develop a dependence on them, so that whenever I stop using them things go to hell in my ear.

The End of the Tunnel?

This is getting just a little tedious. I saw the ear doctor again this afternoon, and things looked better than they did last week, better even than they have at any point in this now year-long ordeal (yes, the first surgery was a year ago this past Saturday). But still we have to wait. The affected area of the ear canal is now down to fifteen to twenty percent of the replaced tissue, from twenty-five to thirty percent less than two weeks ago, and the layer of mucosa is now about as thin as it can be and still be considered a layer of its own. But it’s not healed yet. It should. In every other case the doctor has seen, I would be home free from here. But my ear has already managed several things he’s never seen before, so he can’t say it won’t again.

We can’t really continue with the wicking and drops. The wicking, as a foreign body and thus a focus for infection, can’t be put in the ear without the drops. And we can’t continue the drops because I’ll develop a resistance and then fungus would grow in my ear. I found that line of reasoning compelling. At this point, I just have to assiduously keep the ear dry and let it get air. The ear canal is now considerably widened, by his surgery and by the fact that the swelling has gone down, so it should get plenty of air. I’ll go back next Wednesday morning, and we’ll see where things stand. I remain mildly optimistic.

Repeats are Never as Good as the Original

I had the second ear surgery last Thursday, and I went back to work today, though I’m still not fully functional. This surgery has proven much more difficult for me than the first one, and because the doctor took a skin graft from my hip this time, I have that added pain. More positively, given that I’m now fairly used to all that this surgery entails, I’ve been much less disoriented this time. I’m not having the trouble locating sounds that I did after the previous surgery. I’m getting quite used to having only one working ear. And the pain, on my hip (where it looks like he used a cheese grater to take a three inch long strip of skin) and around my ear, is subsiding as it should.

As planned, the doctor did the surgery differently this time, taking advantage of all that he’s learned since the previous surgery. As I’ve mentioned before, he’s using the one large skin graft, rather than several smaller pieces, and he’s also tried to more effectively address the issues caused by my previously unidentified TMJ. He didn’t discover that until more than two months after the previous surgery, so he didn’t take it into account the first time. It’s not clear to what extent that contributed to the replaced tissue becoming mucosa, the ultimate reason the surgery had to be done over, but the more he addresses up front, the better our chances are. This time, he tried to address it in the surgery. He tried various things, and opened and closed my jaw like a ventriloquist’s dummy’s during the surgery to see how they worked. He tried putting some cartilage between the jaw and the ear canal, but the bone pushed through that. What he finally settled on was replacing almost all of the skin with a single graft, and then replacing the skin directly over the bone protrusion (only a few square millimeters) with a separate graft. He’ll then keep the ear well-packed to ensure that the protrusion is scarred over as it should be (and as it was eventually last time). If there are any problems with that, the rest of the graft should still heal correctly, and that specific problem can be addressed by an oral surgeon. I hope that doesn’t prove necessary.

But the real difficulty this time has been emotional. I don’t know how much that’s related to the surgery and how much it’s just an accident of timing. Certainly any surgery is traumatic, as is the related starting and stopping of very powerful medications, no matter how much less I dread it than most people do. And the prospect of having to wait weeks, possibly months, before we know whether or not this will even work isn’t conducive to peace of mind. But I think the larger problem is a coincidence. All of this is happening while I’m still trying to recover from having been, for lack of a better term, emotionally overwhelmed. I stopped taking the clonazepam about a week before the surgery, in part because I felt better and didn’t think I’d need it any longer and in part because I thought it would be best not to have to account for that among all of the other medications I would taking. And for the first three nights, I felt fine. But the Monday before the surgery, the anxiety returned. I thought it might just be a symptom of withdrawal and figured I’d tough it out, but it kept getting worse. By the day before the surgery, it was clear that this wasn’t from withdrawal and I was just anxious, but at that point it didn’t make sense to re-start the clonazepam.

I didn’t sleep the night before the surgery. Even the night after the surgery, with no sleep the night before, the general anesthesia, the intravenous painkiller, the Percocet, and a few hydrocodone, I didn’t so much sleep as nod on and off. And that’s the way my sleep remained into this week. On Saturday, when it seemed I was no longer in pain, I stopped the hydrocodone, and gradually the pain emerged all over the place–stiffness in my jaw and neck, soreness in my hip, and a general feeling of being beaten with a stick–but worse was the depression. I just felt hopeless, and I couldn’t think of anything I’d even want to hope for. After the recent return of my anxiety, this marked the return of crushing depression, the other half of the cyclothymic experience. I started back with the hydrocodone, which helped, but not enough. Finally yesterday, I pretty much stopped with the hydrocodone and started again with the clonazepam, and finally, I slept well. Today, I could even imagine hoping for things.

With all of the things that have happened over the last month or so, it’s hard to tell what’s causing what, but it’s reassuring to know that I can feel better. I’m going to see the psychopharmacologist tomorrow morning, and we’ll discuss what the long term plan will be, but I suspect I’m going to be on an SSRI for a while. The clonazepam isn’t a long term solution, but I think I’m going to need something for a while. Though I’m not entirely pleased with this situation, I have to do something, for myself and my wife–it’s not fun being around me right now. We probably won’t be able to make any final decisions tomorrow, given how up in the air my condition is, but we’ll start formulating a plan. The other thing that’s reassuring (perhaps) is to learn that however bad (or good) I feel, it’s temporary and it’s caused. I know that in a cognitive sense, but I still haven’t fully absorbed it experientially–I don’t yet have faith in that truth. Once I do, I suspect I’ll suffer less. Perhaps the worst aspect of depression is the inability to remember ever having felt differently or to imagine ever feeling differently again. I suspect that once I’ve genuinely absorbed the truth about that, depression (or anxiety) will be less overwhelming, but until then medication is likely to be an intermittent reality.

Once More With Feeling

When last we left my ear, the left one that is, the lining of its outer canal and the ear drum had, after a tympanomastoidectomy and against all of the known laws of medicine and biology, turned themselves into mucosa. Odder still, all of the difficulties typical of this sort of surgery were averted. The cholesteotoma was successfully removed, all of the grafts took, and the hearing was returning as expected. But with the tissue stubbornly remaining mucosa, my hearing can’t get much better (at least not very quickly), I have to keep my ear dry at all times, and even then, it’s ridiculously susceptible to infection, meaning I get a regular diet of antibiotics that’s probably not a great idea in the long run.

Last week, I visited my doctor’s mentor, which put me three or four rungs up the specialist ladder, and I don’t think there are any rungs above this one. He looked into my ear, asked a few questions, and said there were really only two options available to me: leaving things as they are or doing the surgery again. He recommended doing the surgery again, with the slight change that a single large graft be taken from my hip (rather than the several small grafts taken from behind my ear). He also said, without my even having asked, that the hearing would never really recover in that ear, though he quickly qualified that by saying that he hadn’t seen the full history of my hearing tests (he’d only seen the most recent one). He then went on to assure me that my doctor is an excellent technical surgeon and, for good measure, he cauterized my ear.

I had a little over a week to think this over before going back to my doctor, during which Jeannie stopped by to share the story of how badly her cholesteotoma surgeries had gone. I admit to feeling lucky in comparison. Though my hearing hasn’t fully returned and there is some ringing in my ear, the situation is one I could live with without complaint if it were permanent. As annoying as some of this has been, I haven’t suffered in any meaningful way, and unlike any sane person, I actually don’t mind going through surgery. I find the whole process fascinating, especially when I trust everyone involved, and I love the idea that I don’t really have to do anything but be attended to for a few days. And it’s the only time I ever indulge in anything even remotely like recreational drug use.

I went back to my doctor this morning, and we discussed everything. I’m actually developing more of a rapport with him than is usual with a surgeon, and I find his prototypically geeky combination of expertise and childishness charming. He was so proud of his mentor, and he wanted me to be, too. After reviewing all of the background, options, and implications, I asked him what he would do if it was his ear. He said given my youth, he would have the surgery. He said I would have to live with this ear for a long time, and that being otherwise very healthy, I should heal quickly. (It’s nice, now that I’m forty and it feels a bit like I’m falling apart, to be told I’m young, hale, and hearty.) He couldn’t imagine that I’d end up any worse off than I am now, and I might very well end up better off. He admitted that he couldn’t tell me how likely this was to work, since what he’d already done should have worked. And then he let me think about it. I decided to go ahead, and now I’ll spend Memorial Day weekend recovering from surgery. I kind of wish I could get it done sooner.

There was an interesting aside in this discussion. I mentioned that the hearing isn’t bothering me, and if that were the only problem, I’d be relatively happy. It’s just the other implications of the mucosa that are bothering me. I told him that in reflecting on this over the last week, I wondered if there was a way they could just replace the tissue in question with vinyl or some other inorganic substance. I wouldn’t have any hearing, but I wouldn’t have the issues of moistness and infection. He said that there actually is such a procedure where they block the ear canal. He said that hearing is reduced, but not destroyed. Yet he wouldn’t recommend this for me except as a last resort because it’s destructive and he still has hopes that my ear can be fixed. I found this comforting first because such a thing would be possible and second because it’s not yet necessary. It’s nice to have options.