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.

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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.

nasal tap

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.

20 thoughts on “The Mother of All Sinus Infections

  1. Christina Bharara

    Reminds me of my childhood… Until I was 16, antibiotic use for sinus infections had not been discovered where I lived, so each year about twice from 10 years old, I went through the needle and flushing method. I knew of a girl with a special aggressive case, who went weekly through the procedure… If it’s less than a year ago, they can use the same hole (in the bone). And yes, I know that certain tooth pain means sinus infection only.
    Myself on Amoxillin and Mucinex right now…
    Hope you get rid of the stuff.

  2. Valerie

    I hope you get through this. While I’ve been battling a long sinus infection for the last year, mine seems finally under control (I hope!) and I didn’t have to do anything as severe as your procedure. I have had good luck with sinus rinse kits (more pressure than a neti pot, but only really works if there’s a way to get the saline in there in the first place). I hope you get this worked through soon!

  3. Ann-Lee

    Girllllll!!! You are a strong woman! I have had a few sinus infections in my life, nothing close to the amount you have gone through and I thought of just rolling over and dying. The pain and fever took over my whole body. I have read your newsletters over the years and have marveled over how you were able to push yourself to work during your sinus infections. I sincerely wish for your healing…a friend once told me “don’t quit before the miracle happens”.

  4. nmlhats

    I have an extremely low pain threshold…and an appt with the ENT in a few days. I am now scared shitless about what he is gonna tell me! But knowlwedge is power, I suppose, so if any of those”procedures” may be in my future, maybe I am better prepared for the horror and pain.

  5. flexy123

    Oh Cheezus I can’t believe you went through all that and it basically did not have any effect with the bacteria still in there. As for the flushes with a bottle or a Neti, yes, it’s also my understanding it merely “flows by” the openings but doesn’t really “flush out” the sinuses as one may at first believe.

  6. Cindy O'Neal

    Oh my jesus sister!!! I feel for ya… I have been battling these all my life!! Have had sinus surg in the past to clean them out but not like that. Now I have a huge infection, xray shows sinus’ completely blocked & I have a rotting smell again. I also have history of MRSA in there whe they cultured a gob of it. I need to get to an ENT asap, cuz my pcp is trying to treat but I don’t think he really knows much… I told him I thought it was pseudo & he just looked at me. Best wishes & healing to you!!!

  7. Susie

    I can relate. OH CAN I RELATE! Had my sinus tapped (as a teen). Sinus surgeries…X2. Helped me drain. Then, 15 years ago, I got pseudomonas sinusitis. IV antibiotics helped for a time to bring me back to normal functioning, but then I slip back to the exhausted/sick/PAIN in the face and over the eye pain syndrome, with the disgusting green goo from the pseudomonas draining out of all orifices. It never goes away. It’s settled into my head (colonized)..and has marched on down to my bronchials. Now I can add a cough to this. GROSS cough. Just finished a round of IVs…feel bad from the medicine and the infection. Relief? What is that? Checking out alternative modalities, although I have been there done that too…but there has to be more. Be careful with irrigations….can leave you with a fungal infection as well. I have been cultured all along the way. When I see the culture results, I cry every time. Pseudomonas aeruginosa. Again. Always. Heavy growth. And you know, it’s a dangerous bacteria to have in your head! I agree too with the smells. Cannot fully express how it works, but I smell things that simply are not outside. Smells of dead, rotting, dirt.

  8. Deirdre Straughan Post author

    I feel for you. Grateful that my current infection (thanks partly to chemotherapy) is “only” staph. For me, multiple rounds of ceftin didn’t work on the pseudomonas – had to have surgery to clean it out. Hoping it doesn’t come to that this time!

  9. Susie

    Ceftin is a good med, but not effective for pseudomonas. I am allergic to Cipro and PCN and others, so IV drugs are the only ones for me at this time. I know that staph is not good either. Sorry that you have the chemo to contend with also. People think of bacterial sinusitis (especially chronic) as being a simple issue…like a cold, or other virus. It’s not! I hope you do not need to be “cleaned out”!

  10. Teri

    I had pseudomonas when I was in the ICU with Flesh eating bacteria, gangrene and MRSA. My torso, right leg and right breast list a lot of tissue. I look as if I dated Freddy Krueger. The smell in my nose, there’s nothing like it. I have a primary immune disorder and have to do weekly infusions, but I now have the rotting smell. It is so pungent it makes me gag. I’m so scared right not, Especially with the MRSA colonization. I see my infectious doctor ever 4 to 6 weeks anyway, but I’m so so scared. I, too, am allergic to everything except Levaquin. I’m on an antibiotic right now and putting bactrum ointment in my nose as high up as I can get it. Do you still fight with the infection? What finally got it under control?

    Teri

  11. Deirdre Straughan Post author

    Agh, I’m so sorry – that is a truly frightening situation!

    At the moment the pseudomonas seems to be under control – I’ve been rinsing with gentomycin solution (using a Neal-Med squeeze bottle) twice a day. Fingers crossed.

  12. Sandie Gilliland

    Deirdre, how are you doing now? Does anyone ever get rid of pseudomonas? I am getting concerned!

  13. Deirdre Straughan Post author

    Thanks for asking. I did get rid of the pseudomonas that time, finally by surgery and a thorough interior rinse. It’s been back a few times this year because my immune system was down from chemotherapy. Fingers crossed – I may finally be done with that aspect of cancer treatment as well!

  14. bernhard

    in Georgia ( former soviet union ) they do treat these kind of infections effectively with Phage therapy instead of using antibiotics that most of the bacteria are already resistant to anyway –
    try it out – it will cost you but it has worked for quite a few and the technology is not new or alternative – it has been done for many decades and is proven and effective

  15. Michele

    I have had pseudomonas for 11 years in my lungs and 8 years in my sinuses. There are other drugs that treat pseudomonas, most CF Dr’s would know best about pseudomonas or an Infectious Disease Dr. There isn’t a way I’ve found to 100% eradicate it because there is no drug that can eradicate it that is why people with CF have a very hard time with it in their lungs. I don’t have CF I have another rare genetic lung condition. I have used many antibiotics in my sinuses. It stinks (no pun intended)……

  16. Pam Carter

    Well I definitely relate to all the comments on here. Had sinus problems all my life. My first sinus surgery was in 1998 and then again in 2000. In 2003, I put away all the prescription drugs and went to see a naturopathic Dr. which used Natures Sunshine supplements. I was completely free of all the prescription drug until July 3, 2014. I had a summer cold…then went to my sinuses which I treated naturally for about 2 months without any success. I finally gave in an went to a ENT. Wanted to do steroids but I refused. I didn’t want to mask any problems and I knew something was definitely wrong at this point. I suggested he take a culture which he agreed. (who is the dr. here?) 3 days later the dreaded diagnosis….pseudomonas ….What the heck? My treatment plan….used a compound pharmacy to mix levaquin & steroid in capsule form and mixed in a sterile bottle that would atomize the treatment into my nose 2x a day. I’m allergic to levaquin so I wasn’t able to let the antibiotic enter my body. I was doing this therapy with some result…but my real results came when I went back to my Naturopathic Dr. which put me on a colloid silver treatment for 15 day….called a silver flush. I was somewhat apprehensive but in 7 days I was starting to feel like myself again. Unbelievable….I had been sick for almost 4 months….I had always used colloidal silver but not in heavy doses. I was so sick…I had nothing to lose. Let’s just say, silver is a staple in my medicine cabinet and I constantly spray it in my nose year around. After about 2 weeks, I was completely cured!

    Here I am writing this today and waiting to hear from my August 15th, 2016 culture ………Well if I have to deal with the dreaded pseudomonas again, I will do the silver flush first. By the way, didn’t have any side effects from the silver. I only use Natures Sunshine. I used their silver gel also to put in my nose if I am traveling or have to go visit the hospital for any reason.

  17. Alexis J Winning

    Hi! I have psuedomonas and staph in my nose but I have been suffering for a year. On another round of antibiotics and have a image guided ct scheduled for the 28th then surgery.
    I started on a silver spray yesterday and hope it works. I am curious as to how your culture worked out. How are you feeling?

  18. DK

    Have you tried the Grossan Nasal Irrigator? Have you tried Sinu-Orega spray? Lastly, have you tried steam inhalations of cinnamon, clove, thyme, and oregano oils? These have worked wonders for me. 🙂

  19. Ian Chafer

    Empathy Plus..for this….I have exactly the smae thing going on for the past 20 years after a coal mine roof fall accident left coal embedded in my left temporal lobe…i also broke my septum which still hasn’t been corrected…Australian Doctors lack Basic Compassion….The Teeth and gums in my upper left jaw are riddled with heavy Gel like mucous…which is riddled with decaying flesh…my spit is Black…you can see the skin in the mucous…also dead skin simply ‘falls’ from my left nostril and the pressure from the mucous builds that much that 100’s of bits of dead skin excrete from my left eye socket…scratching its way under each eye lid…which makes my vision blurry…The Face Pain..is like having sulphuric Acid injected up my left nostril….just from simply opening my bedroom door….from the cold air…..I have been locked away in my bedroom for 20 years…Photo sensative and noise sensative watching TV causes pain….so i cant even watch a documentary….computers also cause great discomfort so am limited to what I can do with myself….Doctors have ignored me far too often…and I gave up on telling them about my ailment…i have been on Morphine on and off for 20 years…..Doctors lack Compassion…or they are simply dumfounded..or they just are not taking me seriously…I have quit dozens of high paying high skilled jobs…not lasting more than 6 months…..The Insurance Company Doctor just accused me of being on drugs…yet wouldnt take a urine sample to prove him wrong….as i have really bad balance and look sick…Everyone Presumes i am on drugs…That is frustrating….being treated like a criminal…for having a work accident….I gave up on compensation years ago…yet it still scares away doctors…one doctor after getting in trouble from the Dept of Health and getting sacked from the medical centre for refusing to fill my prescxription after my original Doctor retired from a stroke…so after the replacement Doctor was sacked…he decided to destroy my huge medical file….now i have to start all over again from scratch……being mis-diagnosed for 8 years…I dont want to go through that again..EVER.

    All I want is a Doctor with compassion…to Diagnose me….that would be a great relief…so I have a name to my illness…Trigeminal Neuralgia is just one illness I have…the Sinus infection is a completely different illness….yet i cant get a response from any Australian Doctor…I am sure they are not ALL assholes….but many of them are….and far too quick to form an opinion without listening to the FACTS……I want to be able to come out of my bedroom without getting this acid burning attack which gets more painful as i grow older……….

    ANY suggestion from your readers are VERY WELCOME….No Body should suffer this much…its the 21st Century for God Sake’s….Surgery would take a great deal of Trauma away….and the right amount of pain relief is needed instead of the pathetic amount they offer you…..Australian Doctors are more worried about themselves and that they might get in trouble for prescribing morphine but thats all crap…Australia supply 90% of the worlds morphine….yet Aussies Do Not Get the Benefit….I feel sorry for ANYONE else who is suffering….as we suffer in silence…we are far too ill to chase Doctors around and get accused of Hypochondria???
    Yes one doctor actually asked me if i knew what that meant…..with an IQ of 151+ i was severely offended…and walked out…Dr [redacted] NSW……is singly responsible for my Reclusion……..Regards long Suffering and Empathetic..Ian Chafer of Shellharbour Australia.

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