preoccupation
I don't expect that I'll be posting daily here, but since I've started working my way through the issues facing me, I'm finding that articulating what I'm thinking here helps me sort through my options: blogging as therapy!
My primary concern right now is, of course, the extent to which my insurance will pay for all of this. Last weekend we were talking and my husband said that if they won't, we should do it anyway. That rather freaked me out, not because I don't agree that it's important, but because it would have a fairly significant impact on my retirement savings, which is the only way I could raise that kind of money. So yeah, really really hoping that insurance comes through. I'm told it's extremely likely, and my maximum out of pocket on my plan is $5600/year, which is actually less than I'd have to pay for new hearing aids.
So I'm reasonably optimistic about that part, though I will say that waiting up to four weeks to get a response doesn't impress me much. I'm sure it's mostly delaying tactics, because they never do want to pay out large amounts. But I wish there was some recognition that this is someone's life they're playing with.
Setting aside the issue of who's paying for this, my main decision now is whether to go bilateral all at once - do both ears in the same surgery. Dr H at the U of M health center assures me that this is still outpatient surgery, even though it takes them five hours (!!) to do two ears. But they don't book the OR in five-hour blocks at the surgery center at Fairview so if I do them both I'll end up at the U of M hospital on the West Bank. Which isn't really significant (other than for my husband, who'd be hanging about waiting for the better part of a day).
But here's the thing: while it's no longer true that you (OK, I) will automatically lose my remaining natural hearing, it's fairly likely. The estimates I was given were from 30% - 50% likelihood that the implantation of the electrodes would make me unable to hear without the CIs, and that over time that natural hearing is likely to more or less atrophy anyway - scar tissue, disuse, whatever. Squishing of the hair cells in the cochlea, I don't know. So once you accept that as expected, the question becomes "what's the likelihood that the CIs won't work for me?" - thus leaving me completely deaf and unable to work because my husband is retired and my income is what we live on, and my employer provides our health coverage.
What I'd heard from some is that it's possible but unlikely. And that, given the outcome, was enough to make me want to do them separately, because then I could learn whether the CIs work for me without messing with the pathetically minor functional hearing I get from my left ear, which is far, far better than what I get from my right.
And then yesterday I just asked the surgeon. What do you think? How many patients have you had that didn't get helped by the CI at all?
And she said, ZERO. None. No one has ever ended up not getting helped at all. Some people get a great deal more hearing back than others, but she has never seen anyone not end up with better hearing and comprehension that I have now.
And this is what she does. She works in a CI clinic. So now I'm considering going bilateral all at once again. That's what we've submitted to insurance (on the theory that's it's easier to reduce what I submit than add to it).
But I'm still quite nervous about it, and I expect that the period between the surgery and activation (~3-4 weeks) will make me crazy.
Crazier.
My primary concern right now is, of course, the extent to which my insurance will pay for all of this. Last weekend we were talking and my husband said that if they won't, we should do it anyway. That rather freaked me out, not because I don't agree that it's important, but because it would have a fairly significant impact on my retirement savings, which is the only way I could raise that kind of money. So yeah, really really hoping that insurance comes through. I'm told it's extremely likely, and my maximum out of pocket on my plan is $5600/year, which is actually less than I'd have to pay for new hearing aids.
So I'm reasonably optimistic about that part, though I will say that waiting up to four weeks to get a response doesn't impress me much. I'm sure it's mostly delaying tactics, because they never do want to pay out large amounts. But I wish there was some recognition that this is someone's life they're playing with.
Setting aside the issue of who's paying for this, my main decision now is whether to go bilateral all at once - do both ears in the same surgery. Dr H at the U of M health center assures me that this is still outpatient surgery, even though it takes them five hours (!!) to do two ears. But they don't book the OR in five-hour blocks at the surgery center at Fairview so if I do them both I'll end up at the U of M hospital on the West Bank. Which isn't really significant (other than for my husband, who'd be hanging about waiting for the better part of a day).
But here's the thing: while it's no longer true that you (OK, I) will automatically lose my remaining natural hearing, it's fairly likely. The estimates I was given were from 30% - 50% likelihood that the implantation of the electrodes would make me unable to hear without the CIs, and that over time that natural hearing is likely to more or less atrophy anyway - scar tissue, disuse, whatever. Squishing of the hair cells in the cochlea, I don't know. So once you accept that as expected, the question becomes "what's the likelihood that the CIs won't work for me?" - thus leaving me completely deaf and unable to work because my husband is retired and my income is what we live on, and my employer provides our health coverage.
What I'd heard from some is that it's possible but unlikely. And that, given the outcome, was enough to make me want to do them separately, because then I could learn whether the CIs work for me without messing with the pathetically minor functional hearing I get from my left ear, which is far, far better than what I get from my right.
And then yesterday I just asked the surgeon. What do you think? How many patients have you had that didn't get helped by the CI at all?
And she said, ZERO. None. No one has ever ended up not getting helped at all. Some people get a great deal more hearing back than others, but she has never seen anyone not end up with better hearing and comprehension that I have now.
And this is what she does. She works in a CI clinic. So now I'm considering going bilateral all at once again. That's what we've submitted to insurance (on the theory that's it's easier to reduce what I submit than add to it).
But I'm still quite nervous about it, and I expect that the period between the surgery and activation (~3-4 weeks) will make me crazy.
Crazier.
Can you ask the surgeon for a few references? Maybe if you talk to people who have had the bilateral CI done by her, at that place, it will ease your mind.
ReplyDeleteOnce again, thanks for sharing what you are going through. I can offer only moral support, but I am with you on that. You are doing a great job of explaining what is going on.
ReplyDeleteYour decision is a tough one. I don’t know what I would do in your place, but if you really need to keep the job, I guess I’d lean towards doing one ear at a time. It’s probably not optimal, but it seems it would lower your risk.
Is there any way that your employer could carve out a job that you could do even if completely deaf? What with texts and email, it seems to me (without knowing exactly what you do) that communication would still be possible, and it would eliminate the problem you mentioned earlier of having to sometimes guess what people are telling you.
As far as the insurance companies, they suck. All of them. We lost something precious when the Blue Cross/Blue Shield companies went from nonprofit to profit status. With a major nonprofit insurer, the other companies would be under pressure to perform better or go out of business. What kind of business is it when insurers make more money by denying service to people? It’s ghoulish (it might be apparent that I have strong feelings about this).
I'm glad that Hank brought up employer accomodations. If you haven't already, do you think it would be worth talking to your HR department about it? (It's not like they're not going to notice that you're out for a few days for a surgical procedure.)
ReplyDeleteI've heard you speak of your employer before, and you seem to have an extremely high opinion of them. I would hope that they would continue earning that high opinion by discussing worse case scenarios with you, and allow you to keep your job should the unthinkable happen.
Hugs, Mary. Thanks for keeping us posted. (Oh, and you know what else? Sometimes it really is all about you - and it should be.)
Oh, I would imagine that they could come up with something for me to do. But there's more to it than my income and my health insurance. I kind of like having some hearing.
ReplyDelete