Hello all,
Thanks for making this forum - I've used it a lot over the last couple of years.
I think I have tinnitus in my right ear from microsuction. There are a lot of other possible causes but in my case I found each time I had a microsuction procedure the tinnitus increased immediately. And as others have said the ENTs didn't warn about the possible risks, seemed pretty blase about the procedure, and one of them was noticeably clumsier and more painful.
I'm in the UK and had been suffering from cholesteatoma, otitis media and otitis externa for about 4 years.
The NHS failed several times to diagnose it. I had been to a hearing aid appointment because my hearing was declining (I'm 45) and they had looked in the ear and done scans (U/S I think) with their equipment and they said I had conductive hearing loss and otitis media and I'd need to get that cleared up before they could fit any hearing aid. The nurses and GP at my local clinic kept giving me ear drops for otitis externa. One of these started mild tinnitus - I suspect it went into the middle ear while it was suppurating. Before prescribing it the nurse asked me to hold my nose and shut my mouth and blow, like as a way of checking the ear drum was sound, which really it wasn't. My cholesteatoma was small and they didn't notice it. When I said I had tinnitus in the follow up appointment they told me they would refer to ENT but didn't, basically it was a lie. So I went private.
This cost me a fortune and I was passed back and forth between 2x consultants + 1x surgeon each charging hundreds for repeating the same assessments. An £800+ CT scan found the cholesteatoma. They removed it surgically. All in all this took about 18 months, but they caught it early and didn't have to remove the ear bones, so I figured at least it wouldn't get any worse. Something also I will just mention is the tinnitus vanished for a few hours immediately after surgery, I wonder if that is due to the local anaesthetics. My hopes it would resolve though following removal of the cholesteatoma have been disappointed though, it gradually came back. It's like having a football ref blowing the whistle in my ear forever, but it does vary during the day and I think background noises might help me block it out. It's worst when I first wake up.
IIRC I have had 4 microsuctions and they seemed to be doing them to get a better view of the eardrum rather than to remove the pus/debris/wax in the ear. The ones with the first consultant were much worse than the others, and the volume of the tinnitus seemed to ratchet up each time.
I haven't trusted the eardrops either and this is a current worry. Everything I'm given seems to be either ototoxic or neurotoxic - is there any way I can tell if the eardrum is intact after the surgery? I think surely they wouldn't prescribe this to me if they weren't sure the eardrum was intact - but the incompetence was pretty constant up until the recent surgeon and ENT, and I'm not even 100% sure with them - nobody explains what they are doing or gives the impression they give a damn. They did take pictures of the cholesteatoma, and it did look like the YouTube videos and the suppurating and brown pus has been replaced with yellow pus. So although the surgery hasn't improved my hearing levels or tinnitus a jot, I'm sure I needed it. It is just I had already run out of trust before I met the consultants and have no way of distinguishing them from the quacks and ass-covering liars.
I'm sure I was getting some neurological symptoms from either the cholesteatoma or the ear drops, which have got better since the surgery. It was that whenever I lay down on the bad ear I would get shooting pains in my limbs, tremors, and perceive weird (kind of repetitive) sounds and patterns. A neurologist couldn't find anything, but their assessment seemed to be looking for much more serious symptoms, it was like whether I could remember names and places or walk straight. For now this has cleared up - the cholesteatoma hadn't gone into my brain according to the CT scan or when they opened it up and looked, but something was going on with that.
As to the causes of the tinnitus, there are too many to be sure, and they don't say "this patient reports tinnitus, let's find out what causes it..." or even ask about it, it's like they see it as a non-problem. The NHS because I'm not a dead celebrity or child, and the private hospital I don't know maybe they have the same culture. But there would be:
The years of chronic infections from the cholesteatoma... the saline, mouthwash, Savlon and/or antiseptic cream... I put in the outer ear in desperation when the NHS were fobbing me off (be great if they could put a warning sign on things for ototoxicity), the four different sorts of ear drops, the countless different courses of antibiotics, the microsuction, the surgery itself, my childhood history of glue ear, earwax removal drops, oh and decades of misusing ear buds. I don't think there are lifestyle factors, I went to loud gigs as a teenager (be nice if they cared about the punters' hearing in later life wouldn't it) but the tinnitus is only on one side and started in the last couple of years. I don't smoke or drink...
In real life they are always going to be pretty safe from any legal comeback for the microsuction, but the equipment designers and government regulators need to adjust for the fact that the equipment is often being used by, and the procedures are often being performed by, consultants who make perfectly obvious the second you meet them that non-medics are lower lifeforms, they are too important to spend time on our little lives or deaths, and they are only there to trouser hundreds of pounds every ten minutes. And that's before the possibility that this professional environment might be quite attractive to dangerous sadists.
Currently I'm pretty sure I have antibiotic resistant Pseudomonas aeruginosa that they had identified prior to the surgery, which is now thriving since all the other microbes in the ear have been killed by the antibiotics post-surgery.
What I'd be really grateful - if anyone can offer thoughts - is whether I can do anything to check my eardrum is intact before I put my latest round of antibiotic ear drops in (they say on the sheet not to use them with a perforated eardrum). Holding my nose and blowing is out. Could a hearing aid clinic give me a second opinion on that? The whole eardrum has been taken down and sewn back up again, and such was his bedside manner that it's not obvious to me if the surgeon remembered doing that before prescribing them.