Sinus Update

…for those who are terribly concerned about the state of my head. 😉

Thanks to all who wrote or called with support and encouragement. Though I’ve had in-person support when it counted most through this ordeal, I have spent a lot of time alone in my apartment, not feeling well enough to go out for company or anything else. So “virtual” company has been more important than ever.

When we last saw our heroine (me), I was awaiting the results of another culture on the gunk in my sinuses. Pseudomonas did not show up on this one, which could mean that they simply didn’t catch it (or anything else) this time around, or that we’d finally got rid of the pseudomonas but I now had some other infection, possibly with anaerobic bacteria (which are difficult to culture). I certainly still had sinus infection symptoms (pressure, pain, fatigue). Anaerobic bacteria are easy to treat, at least, so the doctor switched me to augmentin, a milder antibiotic than the cipro I’d been taking again (with more nasty side effects) for the pseudomonas. If this worked, I might even avoid surgery.

In the meantime, I was trying to keep up a full workload including Oracle OpenWorld, my employer’s huge annual conference, which had taken over San Francisco. I managed to accomplish the tasks that no one else could do in my place: filming unconference sessions about various Solaris technologies. But it was physically punishing, especially as these were taking place about a mile from my home and I had little choice but to haul myself and equipment over there on foot. Having a full-blown migraine (which I very rarely get) on one of those days (all 24 hours) did not help.

This was followed by more, if slightly less severe, headaches which didn’t seem to be in the right place to be caused by sinus pressure. Dr. Johnson sent me for an MRI “just to make sure we’ll be cutting in the right place.”

That was a new experience. The first step was about 12 minutes of “just” imaging. If you haven’t done an MRI before, it’s like being stuck inside a car alarm: you’re in a tube with  very loud electronic noises whirling around you. Then the technician slid me out of the tube and stuck an IV into my arm to put the contrast solution – gadolinium – into me. I felt the “pinch” of the needle (why do they all call it a pinch? do they think I’ll be offended if they use the correct term, a prick?) but not much else, and he kept asking if I felt it burning going in. Nope.

He slid my head back into the machine and started it up again. Then my arm started to hurt like a sonofabitch – oh, yes, that burned. And I wasn’t supposed to move my head at all, so I couldn’t yell or swear. At some point during the three minutes of contrast imaging I was thinking: “I would rather just go ahead and die than go through any more painful procedures.” Okay, I’m a drama queen. But it really did hurt.

I later asked my friend John, who unfortunately has had a lot of experience with MRIs lately, and he confirmed that what I was feeling was the pull of the machine’s magnets on the metal in my veins. I was lucky to feel it only in my arm, and lucky that the contrast imaging didn’t take long.

The worst part was the anxious several days’ wait for results, but, as expected, these showed that there is nothing wrong (structurally, anyway) with my brain.

Meanwhile, the augmentin wasn’t doing much: the infection felt at least as bad as before, and grew steadily worse with more pressure and pain in my jaws, upper teeth, and ear, and more severe headaches (which were likely caused in part by stress).

The following week I agreed with my boss that it was time to go on medical leave. Illness is not made any easier by having to deal with scary and confusing bureaucracy, but I think we’ve finally go that sorted and, so far at least, I still have a job and a paycheck. Though the official corporate paperwork that came in the mail was careful to state that my job was guaranteed “unless your position is eliminated or there is a reduction in force.” Nothing like fear of losing your employment to aid the healing process…

I had the sinus surgery (endoscopic maxillary antrostomy) on October 7th. Normally this would be a minor procedure, but Dr. Johnson recommended that, because I was starting from a baseline of so much illness and trauma, I should take two weeks’ leave afterwards to recover. I can see now that he had a point.

I spent the night before the surgery imagining every possible worst-case scenario. It was done under general anesthesia which, as the anesthesiologist explained, differed from what I had last time only in the amount of the medication he gave me – it was the same stuff, and I hadn’t had any problems with it before, so nothing to worry about.

I remember walking to and lying down on the table in the (very cold) operating room and being bundled up with blankets and pressure pads around my legs. Next thing I knew, I was in the post-op recovery room with faces around me, but it took some time to coordinate my head and mouth to speak.

General anesthesia was different in ways I didn’t know to anticipate. It took me longer to clear my head and feel fully alert (then they put painkillers into me through the IV, so I don’t know where one effect left off and the next began). I remember people talking to me during that post-op recovery period (however long it was), but don’t remember everything that was said, and apparently I was already talking before I remember being conscious. Fortunately, I had a witness there to remind me later about the important stuff that was said to me.

I do remember Dr. Johnson saying that they found fungus inside my sinuses this time around – gross! But not unexpected when I’d been on antibiotics for so long; it’s only a wonder that I haven’t had a yeast infection yet. They’re culturing again to try to figure out what else may still be in my nose.

I guess under general anesthesia they have to intubate you, but I didn’t know about it coming or going, and had to infer it from the soreness in the roof of my mouth and my throat later on. My throat was particularly sore the next day, but this appears to be a common after-effect of surgery.

As for the procedure, there’s at least one video on YouTube, but for the moment I can’t watch it. It involves enlarging or re-opening the natural holes between the sinuses and the nose. This was done with an endoscope inserted through the nostrils, so no cutting through my mouth or face (the old-fashioned method, which I’m glad I missed out on). Still, there was cutting, and there are raw surfaces still bleeding in there. I guess in that dank, moist environment it’s harder for wounds to dry and heal. Blood only actually dripped out of my nose for a few hours after the surgery, but it’s still bleeding inside so I’m coughing and snorting it out from time to time – gently.

Once the openings were made, Dr. Johnson irrigated and flushed out the sinuses. I’m glad I was asleep through that this time.

I went home, had one strong painkiller in the evening after the IV stuff wore off, and then managed not to take any more pain medication for four days – a huge improvement.  I’ve probably been avoiding medication more than I should, as I’ve still got quite a lot of pain and, from that, fatigue. Clearly recovery will take some time yet – I tire extremely quickly.

Saw Dr. Johnson for a post-op visit yesterday, and we’re still in wait-and-see mode. The cultures haven’t shown anything, but it may still be growing. I’m off all antibiotics for the moment; it may be that the gunk left in there by the time I got to surgery was old, dead stuff that had already been killed by the antibiotics but couldn’t get out of my poor, battered nose.

Perhaps my biggest problem at the moment is boredom; I’m very sick of being cooped up in my apartment, spending way too much time alone in my own head. However, I don’t have energy to do much and, being on medical leave, I’m probably not supposed to be out having fun anyway. Dr. Johnson did say after the surgery: “I’d tell you to take it easy, but I know that’s not in your nature.” Well, my body is telling me – in no uncertain terms – that this is a time when I must take it easy. So, more or less, I am.

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The Mother of All Sinus Infections

Note: If you are squeamish about surgical procedures and pain, there are parts of this you really don’t want to know about.

Part 1: early-mid July, 2010

I’ve been suffering from sinus infections for at least 25 years, perhaps s a result of living much of my life in very polluted environments (Bangkok, Pittsburgh, Milan). Chronic sinus problems are so common that I’m sure many of you can empathize. But this latest bout is probably the worst I’ve ever experienced.

It’s not so much the pain. There is pain, but not the screaming headaches and “bend over, and feel like someone stabbed you in the face” pain I’ve experienced in the past. Maybe I’m not getting the pain of stuff sloshing around because my sinuses are so full of gunk that there’s nowhere for it to slosh. I’ve seen the CT scan, so know this to be true.

But I can feel this in my upper teeth on the right side, and the hinge of the jaw. I’ve had TMJ for years as well, figured this was more of that (grinding my teeth lately, for unrelated reasons), but it also seems to be a symptom of the infection.

And there’s a horrible smell that I can sense, not exactly in my nose, but inside my head somewhere (maybe the vomeronasal organ?), like something died and is rotting in there. Getting this gunk out will probably be a disgusting process, but I’ll be glad when it’s gone.

This pain isn’t even really manifesting as pain. It somehow gets translated into “I feel so awful I want to cry,” and shattering fatigue. Tylenol with codeine dissipates the feeling, whether because it is in fact relieving pain, or because the codeine is enough of a high to take the edge off the mood. (Yeah, I’m a big-time druggie if codeine can do that to me.)

For years I have resisted the idea of sinus surgery. People I know who’ve had it report that it works for a while, then doesn’t. My sinus doctor in Colorado wanted to operate, but, as far as I could tell, he just liked doing surgery. He never did anything to convince me that it would be effective.


Part 2

I don’t remember exactly when the above was drafted; between severe illness, and tumult in other parts of my life, much of this summer went by in a blur. I had taken antibiotics for an acute sinus infection back in February, as, indeed, I have done at least annually for many years. That round of medication calmed things down, but I never felt fully cured. I had suspected for years that a colony of something had taken up permanent residence in my sinuses, and over time had become resistant to various antibiotics. I could tell a new doctor, “No, that antibiotic probably won’t work” – and I was always right. You’d think that would be a clue, no?

By Memorial Day weekend (end of May) I was feeling bad enough to seek a doctor here in my new home in San Francisco. My friend Jeffrey suggested using Yelp to get a recommendation, and he was the one to find San Francisco Otolaryngology. I called just before the holiday weekend but, not surprisingly, it was impossible to get an appointment anytime soon, especially with the strongly-recommended Dr. Jacob Johnson. So I didn’t make one. I treated myself as best I could with nasal rinses (neti pot), and got through the immediate crisis.

By the July 4th holiday weekend, I just couldn’t go on any longer. I called again, and was able to see Dr. Brian Schindler in the same practice. He rinsed out my nose (squirting saline up one nostril, siphoning it out the other) and collected samples for culturing (he got charmingly excited over snot). This was a big “Well, duh!” moment for me. Why, in 25 years of infections, had no doctor ever thought to culture the stuff? Why had I never suggested it? From my adolescent experiences with having third-world diseases in Bangladesh and India, I was used to the idea that you take samples, find out what’s growing in you, and treat accordingly, rather than prescribing random medicines in hopes that something will work.

I saw Dr. Schindler on a Thursday or Friday; the culture wouldn’t be done til the following week. But my condition by then was so awful that he wanted to start me right away on Augmentin (antibiotic). “I don’t think that’ll work,” I said. “Maybe not, but it’s less toxic than some of the alternatives. Once we get the culture back, we’ll change it if we need to.”

I got an almost frantic call on Monday: “Go to the pharmacy right away and pick up a prescription for Ciprofloxacin, come in and see the doctor again ASAP.” The bug in there was pseudomonas, a bacterium which doesn’t respond to any other antibiotic. I’d taken cipro before and didn’t like it, but there wasn’t any other option. Sometime around then they did a CT scan: yup, looks pretty gummed up in there.

After two weeks on cipro I wasn’t any better. Dr. Schindler said he could “tap” the sinus to flush it out more vigorously, but he was afraid that the natural openings the stuff needed to drain out of might be so swollen by infection that not much could come out. He suggested balloon sinuplasty, a new procedure analogous to angioplasty: a catheter is inserted and a balloon inflated, to widen the natural sinus-to-nose openings.

Although I’d never had anything remotely surgical done to me before, I was by then so miserable that I would have agreed to anything. The upside was that this made me a patient of Dr. Johnson, who turned out to be just as wonderful as everyone on Yelp had said (though I liked Dr. Schindler, too).

We scheduled the surgery in a hurry; it was performed on July 29th at the San Francisco Surgical Center, in the same building as SF Otolaryngology. I hadn’t been aware of this new trend in American medicine: small surgical centers can be quicker and cheaper for outpatient surgery than hospitals.

It is possible to do balloon sinuplasty under local anesthesia (in fact, if I’d been able to wait a few weeks, I might have participated in a study to do it right in the doctor’s office). Since I didn’t know how I would react to other kinds of anesthesia, I initially opted for local. But I did expect to be given Valium or some such to help me face it more calmly (I’d never done anything like this, remember?). Somehow that was overlooked during the admissions procedures, so, when they finally came to take me into the operating room, I was stark, trembling terrified. (As well as exhausted – hadn’t slept from nerves and pain – and very ill.) We mutually decided to do anesthesia after all.

It was the best sleep I’d had in months. Unfortunately, when Dr. Johnson had finished enlarging the hole into my left maxillary sinus and was ready to start flushing water through it, they woke me up, so that I wouldn’t breathe the stuff into my lungs. I suppose to prove I was conscious, I had to hold the dentist-style aspirator. This was all very nasty and painful.

Then he did the balloon thing on the right side. Also painful. But I was still anesthetized to some extent, so I guess it could have been worse.

When everything was done and my brain was beginning to work again, I finally asked the doctor a question that had been on my mind for some time: how did someone who was clearly of south Indian origin come to be named Johnson? Turns out it’s not uncommon among south Indian Christians (I’ve spent a lot of time in north India, not much in the south).

I was given Vicodin, got home (yes, accompanied), spent the rest of the day tweeting and sleeping in a haze of pain. The next day I started working again (from home), and was soon back in the office a few days a week, working from home the others. I was even doing vigorous physical exercise, moving boxes of stuff around Sun’s Menlo Park campus to prepare for a major office move. I probably should have been resting and recovering.

Because it wasn’t over. During a first post-surgery visit, Dr. Johnson squirted water up my nostrils and aspirated it out so hard that the cartilage in my nose flattened under pressure. This is not usual; all we could figure was that it had been softened by years of nose-blowing. It sprang back immediately, but I felt bruised the next day. The flushing showed that there was still gunk in there (which I already knew).

I had been on the cipro for six weeks. I was feeling physically somewhat better, but emotionally a mess. Having plenty of reasons to be under stress, I didn’t think much about this. But, after spending one night crying and thinking about cutting myself, I looked up the side effects of ciprofloxacin. Sure enough, they include depression. I stopped taking it immediately.

In any case, it wasn’t working very well, if at all, on the pseudomonas. The next option was to “tap” into the sinus. This means driving a large needle and catheter (picture below) from the inside of your nose into the sinus cavity, then pushing saline through that and out the natural opening to flush out the sinus.

The first time, this took several hours of preparation (mental, for me) and gradual local anesthesia, which was unpleasant in itself: it involved shoving a sharp spike wrapped in cotton with anesthetic on it deeper and deeper into my tissues, then me sitting there with a large metal whisker hanging out of my nose while it took effect. Dr. Johnson does that three times, to numb the soft tissues. It doesn’t anesthetize the bone.

Then he held the side of my head while he shoved a large metal spike through the bone into the sinus cavity. (He told me to close my eyes so I wouldn’t freak out over the size of it going in.) “This is going to hurt,” he said, and he was correct. Hearing something crunch and squeak through your own bone is also uniquely creepy.

He then attached a tube to the metal catheter and flushed saline through it. This, too, was painful and, for the right sinus, was like pushing mud through a straw. Everything (saline, blood, pus) drained out my nose into a kidney tray. It had the same horrible odor I’d been living with inside my head for months, which is the characteristic smell of pseudomonas.

The left side was more painful to get the catheter into, but less painful to flush, and the stuff that came out was mostly clean. So at least we wouldn’t have to worry about that side anymore.

I went home, took a painkiller, and whimpered a lot. There was some improvement over the next few days, but soon the gunk was back.

A week later we did it again, but this time only the right sinus. The procedure hurt horribly again, but seemed to be more effective: the next day (Sept 11) I felt so much better that I took a long walk in the city. However, by Wednesday the bacteria were clearly back in full production. We did the tap again Friday (yesterday), only to try to tame the beasts long enough for me to get through my duties at Oracle OpenWorld next week; neither of us expect this to resolve the problem. This time was the worst because the catheter slipped out and he had to punch it in again. I may never forget what that felt like.

Unfortunately, all this pain has in a sense been for nothing: something’s still living in there (he took a culture again just to make sure it’s still the original pseudomonas), and we have to get it out.

The next step is more-invasive surgery. Whereas the sinuplasty ballooned open the natural opening without cutting, this time he’ll cut, to enlarge the natural opening from the sinus into the nose. When you use a neti pot, you don’t actually get much fluid into the sinus: the negative pressure of water streaming past the small sinus opening pulls some of the gunk out, rather than it washing out. With a larger hole, I can squirt or pour fluids into the sinus to attack the beasts directly. Then it will be up to me, I guess, to self-medicate as much as needed.

So… I’m scheduled for more surgery. Fun.

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