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  • Mastoiditis and Cholesteatoma

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    Old 05-11-2013, 10:16 AM   #1
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    Mastoiditis and Cholesteatoma

    I've been searching the web to try and find detailed information about these issues and how people dealt with them, without much luck. I will detail my experiences here and hope that anyone in a similar situation in the future can find this helpful.

    March 30th came down with a cold. By the next day it was a horrible sinus infection. Thinking it was just a virus I waited 9 days to see a doctor. I realized something was seriously wrong by day 6 but was literally too sick to leave my house and see a doc. Day 9 I see a doc at a walk in clinic who misdiagnoses me. That night I lose the hearing in my left ear and go to the ER. ER doc prescribes antibiotics and says I'll be feeling better in 48 hours.

    Three days later, the obvious bacterial sinus infection is nearly cleared up (mucous returns to clear coloured), but hearing has not improved. During this entire time I was unable to eat due to nausea unless I first took a gravol. I would force down a half piece of bread to get medication in me. During the first 9 days I took heavy doses of advil and tylenol for the pain and fever. After losing my hearing, I stopped the advil and just used tylenol.

    A week later I still feel very nauseous, and have been dizzy. Hearing is no better. I manage to get an emergency appt at my family doctors office and by chance see the same doc that I saw in the ER. He prescribes Serc and after much pushing on my behalf agrees to send me for hearing test and CT scan. He refuses to refer me to ENT, but says the tests are needed before any ENT will see me, so do the tests and book a follow up with the family doc in two weeks.

    I get in for a hearing test the next day, where I am told I have moderate conductive hearing loss caused from middle ear fluid. The Audiologist tells me antibiotics continue to work for a week after you finish taking them (?) and to just wait it out, and my hearing will return.

    I manage to talk the hospital into giving me the CT scan that week instead of 6 weeks later like they originally proposed. Serc helps a lot with the dizziness and nausea though I still don't have much of an appetite. My sinus congestion is gone, the pain is mild and tolerable. The two week follow up at family doc I show up and find out I have mastoiditis but no other details because the office lost my test results. After being very pushy they finally agree to refer me to an ENT and tell me to wait a week so they can find the results, then call in myself to book an appointment. At this point the medicate me: two more weeks of clarithromycin, decongestant, nasonex spray, and more serc.

    Infuriated at this and the lack of help they offer, I go and pay for a copy of the CT scan results at the hospital. The news in the report is much more dire than the family doc made it out to be. Erosive changes in the middle ear and in the scutum. Opacification of the middle ear structures extending into the aditus ad antrum. "Aggressive mastoiditis" with complete opacification and poor definition of the mastoid air cells as well as cholesteatoma formation.

    Family doc manages to get a new copy of the test results and calls me to inform me that I can book the ENT appointment. While on the phone I ask them to tell me what the test results are and am told it is mastoiditis. When I asked for further info about the condition they said talk to the ENT. I call the ENT and am told I can get an appt in the middle of June. I politely explain that I thought mastoiditis was warranting a faster appt. Receptionist says to me 'doctors should write urgent on the referral form at the top because we don't read the referrals'. I am flabbergasted at how horrid Canada's health system is. Free (if you can call it that with all our taxes) doesn't equal good quality.
    She agrees to give me an appointment 2.5 weeks later.

    I got fed up and took matters in my own hands and contacted Best Doctors Canada, who gave me names of two otologist specialists in Toronto. I speak with the receptionist at the one otologist office who says not to worry about the delay in getting in, as mastoiditis takes some time to cause damage and I will be fine. I call my family doc to get them to write up the referral only to find out that there are no doctors available for half the week. I must wait until next Monday to go in and beg/bully them to write up a referral to the otologist. I will keep my ENT appt (scheduled for next Wednesday) in case he can answer some of my questions, and in case he ends up being my follow up care doc if surgery happens. Also, my antibiotics and serc run out the day before, so I hope he will consider re-prescribing.

    Of special note: my hearing has gradually returned over the last week. Not perfect, but definitely livable. I still have popping and crackling in that ear constantly, but the hearing is much improved.

    My questions, that I haven't been able to find answers for:
    1. Can I pass this on to my young son? I would assume if he had a high enough bacterial load from exposure to me that it is possible, but have no confirmation one way or the other.
    2. Is it safe for me to be getting water in my ears right now? (showering/bathing)
    3. How fast does mastoiditis move through the bone structures?
    4. Is there a way to re-confirm the cholesteatoma diagnosis before doing surgery?

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    Old 05-15-2013, 06:35 PM   #2
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    Re: Mastoiditis and Cholesteatoma

    Update: Saw the ENT. He says I am not infectious to others, and is surprised at my lack of symptoms (ear fullness and dizziness only at this point, with very mild hearing loss now). He feels these are either very old chronic conditions that went undiscovered until now or that by a miracle the ct scan is wrong. He wants to wait a month and do another ct scan to confirm the diagnosis. I was very pleased with this course of action! He has also told me to keep my referral to the otologist (surgeon) in case it comes back with cholesteatoma again, since it can take six months to a year to get in to see them. He renewed my script for serc, and wanted me to take ciprofloxican for a month. I'm declining the cipro and plan on calling him to ask for a safer antibiotic choice.

    Last edited by Irmie; 05-16-2013 at 04:52 PM.

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    cholesteatoma, hearing loss, mastoiditis, middle ear

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