How debilitating were your symptoms before surgery?
I'm 32F.
Multiple ear infections as a kid.
Late 2016: ear symptoms worsened
2017: diagnosed with cholesteatoma and had CWU mastoidectomy + myringoplasty.
2019: look-in + titanium OCR / tympanoplasty.
Have been feeling not quite right the last few years but at my annual reviews I was given the all clear despite no scans.
Since Feb my symptoms have drastically worsened and a CT confirmed my cholesteatoma is back in my left ear and possibly my right.
I'm doing a PhD and was working almost full-time. I'm used to being "high functioning" but things have gotten worse fast. I've taken sick leave from PhD and am only working part-time now but am on the verge of going on government income support until I have surgery because I feel so awful.
It's so hard trying to explain how debilitating this disease is. I can't even put into words how I feel. It's this awful combo of constant pain in both ears + pressure all through my head + exhaustion + a constant feeling of being off balance + bouts of acute vertigo + visual disturbances + worsened tinnitus and deafness + recurring fevers and nausea. I sleep for 12 hours a night lately and I still wake up feeling like I've been hit by a truck.
Lately I can't concentrate on my PhD work and even at my day job I'm struggling to do the bare minimum. It's like my brain always feels "hot" and I can't think straight. I'm also much more impatient and moody.
I'm not seeing my ENT surgeon until the end of June and I'm not sure when my surgery will be. I can't remember feeling this bad prior to my last surgeries and just want to know if anyone else can relate to how bad I feel. Also, I remember the first ENT I saw about this told me "this disease doesn't cause pain". And whenever I search the medical literature about cholesteatoma, it's so black and white and understates how awful this can feel.