First pic is ear discharge. Second is what drains out my throat even after antibiotics for months.
I have been told I have a probable cholesteatoma based on CT imaging. I got this diagnosis after about three months of being told I had fluid behind my ear drum, an outer ear infection, and lastly, an inner ear infection. I have seen my doctor, urgent care, and finally visited the ER three times without this being found. Finally on my fourth trip to the emergency room, the doctor ordered a CT with contrast which I had never had in my life, even with my chronic sinus issues. I have since been to the emergency room yet again a few days ago because of bleeding from my ear and was given a CT of my temporal bone.
The whole time the pain and from what I can tell infection has just gotten worse and worse. My CT shows also fluid and large effusion in my mastoid bone. I had tried to tell Dr I believed I had mastoiditis because I am the type of person who does Google my symptoms and that is what it felt like. I am pretty sure I still do and the only time this has shown. Any significant improvement is when I’m given IV antibiotics. Ciprodex eardrops help a bit, but it feels as if there is a severe infection, possibly an abscess somewhere in my head and simply like the bone is infected. It’s hot and itchy inside the left side of my head. The discharge is yellow to orange in color and bloody at times, and it has even been pure blood. It pours from my ear and drips down my neck.
Yet no one seems to believe that the fluid in my mastoid bone is acute mastoiditis, or any cause for concern of infection. I am told I need to see an ENT with an otologist. I have an appointment for May 19 but I feel as though I will end up back in the hospital again or dead. I’ve been taking Levaquin for 20 some days now. Prior to that I had 10 days of Augmentin, 14 days of cephalexin, and 5 days of azithromycin. Each time I run out of antibiotic within 24 to 48 hours I am back to feeling like I have the worst flu or overall malaise I’ve ever felt on top of far worse ear pressure, discharge and pain.
The vertigo and nausea has been debilitating. Even with Zofran, I’ve thrown up a couple times. Meclizine seems to possibly help with the dizziness, but I can’t really tell if it helps or just puts me to sleep. I have even had a prescription for hydrocodone/acetaminophen 5/325 for the last two weeks and still the pain is nearly unbearable at times. I’m the type of person who just never runs a fever. Currently, I don’t know how I could even if I tried because I have been taking Advil and Tylenol as often as allowed. My white blood cell count has been elevated each time at the emergency room, but not so significantly that I need to be hospitalized they say. I have sticky discharge from my nose and I also accompanied by an intense pressure and splashing amount of fluid somewhere behind them. My nose got so stuffed that I can’t breathe and then neon yellow discharge comes out from time to time, especially if I use my Neti pot. The sinus symptoms were present prior to the ear issues and I have been on antibiotics off a week or two, then on a week or two for probably six months trying to get a handle on it.
I don’t know if any of this adds up because I am not reading anyone else’s story that sounds even close to mine. While they may indeed be a cholesteatoma, I highly suspect there’s something bigger going on. I’m asking because I suppose it would be reassuring to hear that someone else experience the same and came out of it alive because I am starting to feel like I will die before I make it into my ENT appointment waiting on an opening with an otologist. I tried to get in with the ENT here locally, and the hospital even asked on my behalf, but they will not take me because they don’t have the proper doctor. I am a single mother and being home alone with my two young kids scares the crap out of me. I’m afraid I will drop dead in front of them one day soon. I’ve also had neurological symptoms and reported this, but one doctor told me that she would be concerned if I didn’t know what day it was or where I was otherwise it seems fine. But I have been forgetful brain fog, can’t get the right word in my head, and also irritable. I suppose some of that could be the lack of sleep, but I can tell improvement when the infection goes down in the hours and day or two after having IV Zosyn.
Again, just curious if anyone else has dealt with this or anything similar with a prior ear infection. Additionally, if you have any advice on how to get quicker treatment or surgery to remove this thing, I would appreciate that as well.