Throwing stuff at the internet to see what sticks
Tuesday, April 15, 2008 Lend Me an Ear
Trash is pretty much deaf in her left ear, so she went to the doctor to see about fixing it.
This deafness isn't one of those things that just start happening when you get to the age where warranties start expiring. She was in her mid-twenties when a previously asymptomatic ear infection caused her left drum to burst, right out of nowhere. She had a couple of surgeries at the time, but the damage was too extensive and the attempts to patch it never took.
But now that she's a mom, she doesn't like not being able to hear M. Small in the middle of the night if she's sleeping on her good ear. And my congenital low-talker tendencies don't seem to be going away any time soon. Besides, it's 2008. We live in the future!. So Trash decided to go in and see if any advances have been made in the field of auropercussiplasty (a word I just made up. Who's going to stop me? It's the future!) in the last decade.
She went to the top ENT specialist at our large clinic a couple of weeks ago, not really expecting anything, but taking the clinic's current motto, "It never hurts to ask," at its word.
Well, apparently, the top ENT specialist at our large clinic never signed off on that motto, because she spent the entire appointment acting like Trash was wasting her time. She wouldn't even look at Trash's medical records until Trash agreed to make an appointment to get checked out for a hearing aid.
Now, Trash has never been interested in a hearing aid. In addition to her not wanting to deal with what a pain in the ass they are, her left-ear deafness is most severe with low frequencies, or in the presence of wind or background noise, all circumstances under which hearing aids are notoriously unhelpful. Maybe a subwoofer implant might help, but until somebody invents one, she's kind of out of luck. Still, the specialist was calling the shots, and had already marked Trash's file "non-compliant" for the heinous crime of not going to a hearing-aid person before now, so what could Trash do but agree to go to the audiology department? She figured she'd jump through the mad doctor's hoop and get sent back so she could proceed.
That audiology appointment was today at 3:30. The specialist had written 3:20 down on the reminder card, but that's a minor quibble; it's probably SOP to make "non-compliants" try to get there ten minutes early just so they'll arrive on time. The audiologist had already seen Trash before her appointment with the specialist, and was pretty surprised to see her again, especially in regard to a hearing aid exam. He even showed her the note he'd made on her file: "Not a hearing aid candidate." Trash agreed with him, but told him what I just told you: she was only here to make the specialist happy. Fortunately, the audiologist was proactive enough to tell her that insurance doesn't pay for hearing aids if you have a fully functioning ear. In fact, insurance wasn't even going to pay for the appointment she was having right now.
So by this point, Trash is understandably steamed at the specialist. I mean, we could have afforded it, but is she also doing this to people who can't? And it's not like we suspect the specialist is getting kickbacks from hearing aid companies, because that's not allowed. Anyway, the nice audiologist is like, "Let's go get your copayment back," and that's what they do, and he takes the appointment off the books entirely. Thank God for the audiologist.
But now what's Trash supposed to do? She can't go to any of the other ENT specialists at our clinic for a second opinion, because their boss is -- you guessed it -- the same one who blew her off to begin with. She could go out of network, but that's kind of expensive for something her gut tells her is likely to be futile anyway.
So, you know, we're not in Sicko territory here, but if anyone has any suggestions for dealing with power-mad yet lazy specialists, or has read anything exciting in a recent issue of The New England Journal of Auropercussiplasty, or is aware of a technique for spontaneously growing back one's eardrum, give a holler. Just make it a loud holler, and directed to the listener's right ear.
Note: Apparently the actual word for the procedure is "tympanoplasty," which is only about two-thirds as fun as my word, and the goal is to repair a hole in the eardrum. Have at it! posted by M. Giant 5:06 PM 13 comments
Well, I don't enough from the ENT standpoint, but if repair is not possible for whatever reason, has anyone mentioned to her a bone conduction implant? Check it out:
My mom had single-sided deafness for years also and was starting to have neck problems from 20+ years of always turning her head to hear out of her good ear. She just recently had the surgery to get a baha implant (http://www.umm.edu/otolaryngology/baha.htm), which picks up sound from the bad ear side and transmits it to the good ear side, so she hears everything out of the good ear, but her brain can interpret the distances (brains are good like that). Anyway, she loves it. And, although her insurance doesn't cover hearing aids, it does cover hearing devices (yeah, I don't know why there's a distinction), and this qualifies as device. If Trash is really serious about it (it does require a surgery), it might be worth looking into.
Trash could send a nicely-worded fax to her regular doctor, copying the specialist, the hospital system the specialist works for, and her insurance company. I did this when the sonogram people seriously effed up an appointment while I was pregnant. At that appointment, I was "number five". At the next appointment (after the fax), I was "Miss Cora," and treated very, very nicely. Doctors who care do not put up with shit from doctors who don't, once they know about it.
If you don't mind being on a waiting list for a year, and paying higher taxes, you could always move to Canada. I don't even really know what copayment means, and M.Small never has to learn either! We'd be happy to have you, and we have libraries and TV shows to write about here too so employment wouldn't be a problem. Good luck with the hearing thing, eh?
Why can't you go to another ENT in the practice? The original ENT may not even know about it. And in fact, if this is her MO, Trash will certainly not be the first patient to switch.
My sister is deaf in one ear from a severe ear infection when she was a baby. Last year she had surgery to patch the hole in the eardrum with a piece of her jaw muscle. She was in a lot of pain for several weeks afterward and her hearing has not improved one iota. The doctors offered to redo the surgery, but said it was even less likely to be effective than the first attempt.
Cora said "Doctors who care do not put up with shit from doctors who don't, once they know about it," and that was exactly right.
There is only one direction to go with this and it's what everybody hates to do. When the specialist enters the room state that you need to have a talk first. Politely lay out your concerns. Make sure your concerns are factual and not emotional. Meaning that you can state that you feel that by not reading the medical records the doc may have put Trash at risk. By not reading the reports Trash was subjected to another invasive procedure that could have increased risk.
Just to echo. When I felt like my son's pediatrician wasn't taking my concerns seriously enough, I wrote out everything in very detailed form and faxed it to their office. They came around real quick. Maybe before getting others involved, but a step above having a conversation just with this one doctor, would be to put down on paper basically everything you just said here, and fax it to the office specifically for this doctor. Sometimes just stating facts & symptoms like these in black and white makes an enormous difference. Making it look all official with dates and references to other doctor visits also helps.
May I suggest that you also go to ratemds.com and give an honest review. It's important that everyone know about this.
I am also deaf in my left ear. A hearing aid will not help me, and I refuse to have invasive skill surgery for a cochlear or other aid that, in my particular case, will probably not make a difference (so I'm told). Know what I did? I've learned ASL. I've met all kinds of people who sign and get along great. True, it doesn't help hearing M.Small in the middle of the night. But if you teach him ASL, studies show that his own literacy development will move at a faster rate than through just spoken English alone. Just a thought.
From an immediate "fix" standpoint, you all could get a baby monitor that either lights up or vibrates the bed. Deaf parents use them--and, on an aside, my dad doesn't wear his hearing aids when he sleeps, nor does any other D/deaf parent I know.
Mayo Clinic. Is that an option for you? They have great ENTs and they're not-for-profit. Their motto is "the needs of the patient come first."