…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. Â 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.
Congrats on pulling the trigger and getting the surgery … I know it’s a hard decision. I’m betting you’ll feel a zillion times better pretty soon … are you flushing your sinuses with anything, like salt water or Alkalol? Did your doctor talk to you about that at all?
He said I could flush gently with saline, but I tried yesterday and – ow! Salt in the wounds, literally. Think I’ll wait a while on that.
SO what happened??????
I lived. 😉
Hi i have just read the saga of your sinus ordeal. I have had something similar but for only 8 months.
I have just discovered that I ma allergisc to preservative, the sulphates, and my reaction has been serious, severe and chronic.Cutting out the perservatives has made a remarkable difference in just 2 weeks!
It seems that I got a sinus infection as part of the reaction to the preservatives. I have cured the infection by flushing with colloidal silver which is anti microbal and includes fungus. Of course several courses of antibiotics did nothing.
I hope you are getting better and my info can help.
Note there is no reliable skin or blood testing to check for allergies to sulphites.
love and light
Mandy
Hello, my name is Nicky and I was wondering how Deidre was doing . I have had 5 surgeries on my sinuses ,had the cipro, pulmecort ,Bactrim and using tobramycin at the moment , but every time I have a swab it shows up pseudomonas , golden staph or M.R.S.A and something the doctor calls gram negatives. I feel like giving up all meds and I definitely want no more surgery.I have been going through this for about 10 years now , oh ,I forgot to mention I have no spleen so that makes it a bit harder for my body to fight back. If Deidre reads this I really would appreciate for her to contact me and let me know what stage of treatment she is at now or if she has been cured . I live in Australia and my doctor is Professor Wormald, you may have heard of him, Thank you ,
regards Nicky
Hi, Nicky! I’m still here – it’s my blog!
I still get sinus infections from time to time, I’m not sure there is a definitive cure as yet for long-time sinus sufferers.
Last year we tried taking out an old (not very well done) root canal which was slightly infected at the root and might have been leaking bacteria into my right maxillary sinus – the layer of bone between the roots of the upper teeth and the sinus can be very thin. I’m not sure whether that has made any difference in my case, but I’m told that it’s a commonly-overlooked cause of sinus infections, especially (I suppose) if you always get them on the same side.
Nowadays I can usually knock out an infection with one round of antibiotics, except when I get extremely unhappy/stressed – at such times I get recurrent infections, and have to deal with the source of stress (in the recent case, changing my job!).
My sinus doctor here in San Francisco told me that there are some hopes for populating sinuses with good bacteria – the natural flora that should be in there – to try to overcome the bad ones. This would be on the same principle as fecal replacement, which seems to be working for some people with irritable bowel syndrome. But there are thousands of “normal” bacteria in sinuses, and they’re still working on identifying which ones are beneficial, so I suppose that treatment is a while off. Professor Wormald could try contacting someone at UCSF about that research.
Good luck with your sinuses. I’m afraid some of us just seem to be doomed to infections, but at least the temporary cures are not as horrific as they used to be!
well ,I guess , I am stuck with this ,took 10 years to get from having a bout of sinus infection to having acute sinusitis. Started with having a flu injection , and then catching golden staph in hospital to where I am now . I thank you so very much for your information and for replying to me, I wish you many blessings in your life , I hope you enjoy your new job , and I guess in my case the cure is worse then the disease,
with kind regards NICKY
Hi Deirdre
My name is Peter. I read with a great of interest your experiences with sinusitus. It would be very helpful to know how you finally managed to rid yourself of pseudomonas. What worked given that earlier antibiotics had not had an effect on pseudomonas?
Unfortunately, it took surgery and intensive flushing under anesthesia to finally get the pseudomonas out. Not fun, but… at least it worked.
Thank you for sharing. I’m on my fifth round of antibiotics and have a CT scheduled. Ugh. Glad you are better! Only those of us who have had this pain know how bad it is and how difficult it can be emotionally to stay positive when it goes on for months.
Thank you so much for writing this story and sharing it with all of us. I am preparing to go see another ENT after 30 years of dealing with a chronic cough / throat clearing syndrome, so I really appreciate the detailed story of what the investigative process and these procedures are like.
[add:] [… appreciate the detailed story] from the patient’s point of view [of what the … ]
I have been going through surgeries chronic sinusits, antibiotics for 2.5 years now. I too, knew which antibiotics were affective. Unfortunately my infections are reeking havoc, as of late. I finally asked Dr to culture my nose 1 week post-op because I was so inflammed. It came back with psuedomonas. Really? I just went through, the worst, of 3 surgeries, to hear this terrible news. I’m right back where I started. I knew Leviquin and cipro where best for psuedomonas and informed my Dr multiple times that Leviquin was the only antibiotic that would caLm it down (never get rid of). They still refuse to give me a 6 week course. I was on levo for two weeks, went off for 5 days and my sinuses are roaring again as of yesterday. Back on again only two weeks, we shale see. I will be asking for another culture and asking to contibue levi for a total of 6 weeks. The lapses in antibiotic therapy are 1-3 weeks until i just cannot take it anymore. I call and will get another script. When I went into to surgery to clean out left sinus I was on Augmentin for four weeks with only a three day lapse in between the tworld script. I told dr. I have a roaring infection on both sides. He didn’t seem to believe me, until he went In. He ended up doing further than planned surgery on both sides in hopes to squash this chronic problem, but nope. I am also immunocomprimised from MS treatment. These infections exacerbate my MS and can trigger further problems. Im hoping the culture woke up my ENT. I am also doing sinus irrigation with Gentimycin. Can’t wait to see what’s next. I will continue to be my own advocate, but happy to know that it is psuedomonas (you know, so i can tar get this problem). I already have plans for next ENT visit 🙂 wish me luck. The pain from these last 4ish i fections have me bed ridden. So much face pain. Oh, and I’m on 60 mg steroids daily, for pain too, forgot to mention
Thank you for informing me I am not alone! Do you have immune system deficiency? Everything you read says immunosuppressed people are more susceptible. That’s were the blame of these problems keep lying. My Dr is trying but not succeeding. At times I feel like throwing in the towel, but I’m beating Multiple Sclerosis already. I’m not going to let some sinus infections take me down!!
Yes, I was diagnosed a little after the surgeries with a primary IgA deficiency, which does tend to lead to respiratory and other mucous-membrane infections. My sinus infections are never completely gone, they just go through better and worse cycles. Sometimes I can do multiple rounds of antibiotics to little effect, other times (like recently), two weeks of gentamicin rinses keeps it down. It probably also has to do with on external factors like allergens in the air and stress in my life. Of course being on chemo last year didn’t help!
Just be careful on the cipro. It can affect mood terribly – during one long course of it I became very depressed and nearly suicidal. When I realized it was the cipro causing those feelings, I stopped. I’ve had to be on it again several times, but now only a week at a time, and being cautiously aware of how it affects me.
It is SO HARD..not to yell or swear when having an attack….I stand in the chemist waiting my prescription and have 6x attacks from the air conditioning….screaming Jesus and holding my face…….for a grown man to scream in pain out loud in public…there must be REAL PAIN there…..I empathise greatly
The Virtual Friends I have online is what made my reclusion much better…..I literally have been locked away alone in my bedroom for 20 years now….24/7
Dierdra,
I have gone through pretty much all you have, including Gram Negative AND Gram Positive Staph. Three sinus surgeries, first two docs didn’t know what they were doing??Third one was the Charm!
I have crazy allergies to antibiotics. I have only one I can take orally and the other two are injections or IVs. Time has progressed and they now have inhaled antibiotics and they have been a lifesaver! Talk to your Dr about it. Now, as long as I keep my allergies under control and get enough rest I rarely get an infection, but if I do the Dr calls in my inhaled antibiotic (Gyntamycin, sp.?) and I’m good to go. One does have to take this treatment longer than regular antibiotics, but it’s so worth the hassle. The company we first went with was Sinuneb, but since this type of treatment has become more popular there’s more and better competition. Also, you can take meds that you might normally be allergic to, because it’s not absorbed into your bloodstream. The reason this works so well is it gets directly onto the infection. It is antibiotic with a fixative that get directly to the infection.
I hope this helps you and anyone else that reads it. This treatment also has proven to a lot of patients avoiding surgery????
God bless,
Debb
Hi Dierdra, I just came across your article. I hope you are doing better. I have been suffering from sinus problems my entire life, and I am now 52. I have had 8 sinus surgeries thus far, been tapped etc, etc. and no relief. I pretty much spend a lot of time at doctors offices, I am allergic to most antibiotics, so already off to a bad start on that side of spectrum. Your story is so similar with my life story, and all you know is you don’t feel good, you cant breathe properly, your constantly tired, but still have to manage your life. Really sucks. People tell me, things will get better, keep you chin up, cant be negative. I am not trying to be negative, I just don’t feel good. I too would tell the doctors, that med doesn’t work, but they still would prescribe, I have gone from a size 6 to size 20 with all the freaking prednisone they pump into me, just too keep me breathing. That in itself was devastating to me. I am a nurse, and its so hard to see my body changing, or having a patient tell you, you’re fat. So long story short, I finally got a ENT doctor that seems to know his stuff!! I also found out I suffer from Sampter’s Triad, worst case scenario, adds to my already problems. I am currently doing a nasal flush with a steroid in the solution. Worked good for 1st month, and well, back to my norm. Ugh!! So, like you, the ENT doctor did a culture, why had this not ever been done. And quite honestly, I never tell the doctors I am a nurse, I just feel I get ignored, so I just let them do their job. So culture came back, and yes Psuedomonas. 🙁 All meds are resistant, so In January, I will be receiving a invasive sinus surgery, then 6 to 8 weeks of IV therapy via PICC line. I work 14 hour days, not sure how I am going to manage IV therapy, but have a month to figure it out. Your story touched me, I always feel alone, like no one understands. MY GOD, I should own half of PUFFs factory, lol. I go thru boxes and boxes. I’m like a squirrel, pocket full of tissues. I have concerns, if this stuff is draining into chest, I do worry about my heart, and I am not sure why the hec I have to wait a month, but I am at mercy of MD now. At least he knows what is wrong, that is a huge plus for me. I sympathize with all that have this issue. It just freaking sucks. and there are days that I just break down, cry, because I don’t know what else to do. I just feel like crawling in a hole sometimes. Dealing with people can be difficult, especially when you have a severe flare up. Again, thank you for sharing your story. At least I know there are others out there like me. Oh, by the way. I tell the doctors all the time. I smell something, but not sure what or where its coming from, I even taste it sometimes.
Fungus is almost ALWAYS a major component you have to deal with when you have chronic sinusitis and PSUEDOMONAS and STAPH. Always had issues with these two for years! I took voriconzole for awhile and that really helped! Also changed my diet completely – took forever for pseudomonas to go away but then finally it did. I talk a lot about it on my blog Eat Pray Get Well. Sorry you all went through this too, it’s tough to say the least.
I am suffering in similar conditions with the usual anti biotics, predisolone, out of interest what diet changes did you make?
None.
Deirdre, After balloon sinuplasty in September, my face still hurt, even my head. Dr said head hurting was not from sinus problem. For some reason my dr has left practice for who knows how long and I am now seeing an associate. I ran out of Doxicycline? & called in for a refill. That’s when I found my dr wasn’t there. Told I had better come in, maybe get a culture. He could see the green stuff on my throat. After one week the culture was positive for pseudomonas. On cipro for one week already, face still hurts and now I will start another 7 days of cipro. I feel like all my upper teeth needs to come out it hurts so bad, but not a dental problem. By the way, after the sinuplasty, no drainage came out my nose, just down back of throat. I had no problem breathing thru my nose, which surprised me. I still don’t have any thing coming from nose, just down back of throat. Have you heard of that?
I don’t feel so all alone after reading yours & others experience or battle you could say. Thanks for sharing. Judy
Your experience after the surgery is exactly what I had: nose doesn’t get blocked now, and a lot of it runs down the back of my throat (though I also still get a lot out of my nose). Watch out for the cipro – it can have very bad mood effects especially when you take it for weeks at a time. I started having suicidal thoughts when I took it for many weeks in a row. After sitting in bed crying for hours one night, I realize that what I was feeling was not based in any reality. Looked up the side effects of cipro, and there it was. I stopped it right then, called the doctor the next day. He said he doesn’t even prescribe it to older patients – he’s seen people hallucinate insects under their skin! I still do take it from time to time, knowing that I may go through some drug-induced depression when I do. Knowing the cause doesn’t alleviate the depression, unfortunately. It still feels awful until I get through the course of cipro. Unfortunately, it’s still the only thing that will kill the pseudomonas.