Thursday, May 24, 2012

Bone anchored hearing aid saga...

This is something I've been wanting to blog about for a while now.  As it turns out I was pretty naive and thought that getting Harlie a bone anchored hearing aid would be fairly simple.  I don't know why I thought that.  Nothing has been simple thus far.  Yet I still have hope!!!

Sometime months ago I borrowed a bone anchored hearing aid (but not bone anchored, since it was on a soft band) for Harlie to see if it helped her at all - and to see if she would tolerate it.  This aid goes on her left side, the one without an ear.  Well, she did great.  She must have felt it helped her because she would ask for it.  I don't think she cares for the soft band (her skull is not symmetrical so it has a hard time staying on right).  But I do think she finds the hearing worth it.  Because she deals with it and doesn't fight putting it on (for the most part).

So, after about two weeks, we ordered one for her to keep.

There are two companies that make bone anchored hearing aids... Cochlear and Oticon.

There are three parts:  1) the piece that gets implanted in the skull, 2) the abutement and 3) the processor.  The processor is the hearing aid, the abutement is what the processor clicks onto to stay on the head, and the piece that's implanted conducts sound to the bone (or something like that).

Cochlear's processor is called Baha (which is so annoying) and Oticon's processor is called Ponto.

I didn't research this at all.  I just let Harlie's audiologist order what she thought was best for her hearing loss.  And she ordered Harlie the Oticon Ponto.  And it has worked great so far.

So, months later, I go to meet with a surgeon about getting it implanted in her skull, making it an actual bone anchored hearing aid.  Sounds great, decide to go forward and schedule it for June 18th.

Then they called me to talk about ordering supplies.  They think (based on her audiological tests done the day I met with the surgeon) that she needs the Cochlear Baha.  Apprently they have a "power" one and they said that she needs that one.  The problem is that she already owns the Oticon Ponto.

These hearing aids are more than $5,000.  I don't know how they think we're going to pay for two processors.  About a month or so ago we got a bill for $5,000 and it said that her insurance doesn't cover hearing aids.  Which, I think is criminal when it comes to hearing aids for kids.  I get that they don't pay for adults.  But the last thing kids need is for someone to not get them a hearing aid because they can't afford to pay for it.  Anyway, after several phone calls, they realize they didn't bill Medicaid. And after several more phone calls, I was told that Medicaid will pay for it.  Whew!

However, I can't imagine them paying for it now (in May) and then paying for a brand new one next month.  Even I couldn't blame them for that!

Another thing to know...

The Cochlear Baha can ONLY fit on the Cochlear Baha abutement.

But, the Oticon Ponto (the one she has now) can fit on BOTH the Oticon abutement AND the Cochlear Baha abutement.  This appeals to me because that would give her the option to use either processor depending on her hearing loss over time.  Once the abutement is implanted in her skull, there's no going back.  It cannot be changed.  Well, I don't think it can, anyway.

And another thing to know...

The hospital where she is to have this surgery only has a contract with Cochlear.  So, that's all they work with.

So, no wonder they think she should have a Cochlear Baha instead of the Oticon Ponto.

As a general rule - I like to have choices.  And there's only TWO companies that make bone anchored hearing aids.  Why the hell can't you provide both to your patients?  There is no way one is always better than the other for every single patient.  And we're talking about a decision that this patient will have to live with for the rest of their life.

Another thing to know....

This surgeon has never worked with Oticon before.  She didn't know if her tools would work with their materials.  And she needs to get a contract with Oticon in order to provide that product.

So, she said my choices were as follows:

1.  Go with the Cochlear Baha and hope that Medicaid will pay for both processors or try to return her current Oticon Ponto (which would have had to have been done by Thursday, so that's no longer an option).

2.  Go to a different hospital and surgeon who already works with Oticon and have the surgery done there.

3.  Stick with this surgeon - but know that it would be the very first Oticon she's ever implanted.  And she would have to set something up with Oticon to get them out there for the surgery.  So, we might not be able to get it all done in time for her current surgery date of June 18th.

I thought it over for a few days.  And then I spoke to a mom of a third grader with a bone anchored hearing aid.  She has the Oticon abutement and both the Cochlear Baha and the Oticon Ponto processors.  And she (the actual user of the product) said that the hearing quality is better with the Oticon Ponto.

Quite frankly, that's all I needed to hear.  One thing that was bugging me is that Harlie was only tested ONE time in DC.  Whereas she's been tested dozens here in Richmond.  So, which testing should I trust?  I have to go with our local tests, don't I?

Plus, of course they say they like the Cochlear Baha better.  They don't have a choice!

So, I sent an e-mail to the audiologist in DC telling her my thought process (which is to get her the Oticon abutement so she can have options down the road).  A few days later (which was Wednesday) I got a phone call from the surgeon.

After telling her my decision, she said, "Can I give you my professional opinion?"  Yes, of course.  "I think you're making a mistake."

What?  I just don't see how I'm making a mistake.  Doing it this way gives her the option to have either processor should one prove to be better than the other for her hearing loss.  And if in five years I'm told that the Cochlear Baha is the better processor, well I'll pay for it.

How can that not be the best decision?!

She wasn't a believer.  She said that Cochlear has been around longer than Oticon (is older always better?).  And that they have a better product than Oticon.  And that the hearing quality is better than Oticon.  But, how does she know that?  If all they ever see is patients with Cochlear Baha's, how the heck does she know?

Harlie's audiologist here said that they have had more success with Oticon.  Now that's a valuable statement.  And that the repair rate is lower with Oticon (meaning that it's more durable for kids).  Also a valuable statement.

Personally, I think I just saw the money making side of medicine.  Doing it my way means the surgeon doesn't get to order a $5,000 processor.  And it makes NO sense that my way isn't the best choice.  She can have either processor!!!  What could be better than that?!?!

Then she said they might not be able to order it in time for surgery on June 18th.  I said I was fine with that.  No rush.  If it needs to be rescheduled, so be it.  And if Harlie doesn't get better soon, it will need to be rescheduled anyway.

We hung up.  I went to the grocery store.  I gome home and the audiologist called.  She said she had spoken with the surgeon and she just wanted me to confirm - again - what my decision was.  And she said that the surgeon just wanted to make sure that I understood what I was doing.


Was that last phone call really necessary?

I've been working on this post since Wednesday night and between then and now, I've made a decision.  I'm canceling this surgery.  I can totally see this surgeon coming out of the OR complaining about the Oticon materials.  Or saying something negative to prove that the Cochlear is better and that I made a mistake.

I have no knowledge as to her surgical abilities - but it's pretty clear that she's already made her mind up about Oticon (even though she hasn't ever used their product).  Kinda reminds me of when we ask Murphy or Cooper to try a food and they act like it's burning their tongue the second it goes in their mouth because they already knew before "trying" it that they weren't going to like it.  

When it comes to the medical professionals in our life - I need a doctor that's willing to think out of the box.  One that's open to new technologies and products.  And one that can see the benefit of giving my daughter options.

So, now I need to call and make an appointment to see a different surgeon, and start the whole thing over again.  Ugh.  I'm going to see a doctor that Harlie's already seen before (here, locally).  I hear that she's booked to July.  And that's just to get in for a consultation.  I was hoping that we would be able to get it done before her surgery in August.  I just think after her jaw surgery, any surgery is going to be traumatic.  Whereas if I did the smaller procedure first, it wouldn't be as traumatic.  And that's one of the reasons why I was going to go to DC for this.  She's comfortable there.  And they have the cardiac support in which I am most comfortable.  And that cardiac support knows her, too.

It's really frustrating when I think of how much time we're going to lose by not doing this as scheduled. It will take 7-8 months after the surgery for her to be able to actually use the abutement for the processor.

But a good surgeon should reassure me, with confidence, that they can perform the surgery and do it well.  And she has not done that.  She wanted to reiterate that she's never done this surgery with Oticon materials.  I think it's a piece of titanium, that was designed to do the same thing as the Cochlear piece of titanium.  I mean how outlandish can it be?

Well, that's all I have the energy for tonight.

Thank you!


Ann said...

Christy - you are absolutely correct in your decision. (not that you need me to tell you that!) You have gathered information from people who have experience with both devices and the surgeon has absolutely nothing on which to base her statement that Cochlear is better except that it is her preference. I hope she learns a valuable lesson from you that parents do their research, parents make informed decisions and parents won't be pushed around by doctors. Bravo for you! I'm just sorry it adds a delay to getting the device.

You rock girlfriend.


Lisa B said...

I think you've made the right choice. The DC surgeon does sound fixated on the Cochlear version. Blinkered vision is never a good thing for doctors.

Hope you can sort something out soon.

Beverley said...

Ugh, just Ugh.

You made the right choice. We mamas need to be sure/confident in the folks we are handing our children to.

Ann said...

After reading this again, I would really love to know the name of the surgeon because I want to send her the link to this post. You state so well what she NEEDS TO HEAR!

Grandma said...

Trust your have done a wonderful job so far and only you are the one to make a decision regarding Harlie (and Tom) not a doctor....again trust only you!

allie said...

Yes, this is the money side of medicine. Trust your gut.

kadiera said...

A friend (an adult) is getting a bone anchored hearing aid this summer too (though she's getting one that attaches with a magnet, which is probably out of the question for Harlie).

For another data point, her docs here at Univ of Michigan are all of the opinion that the Ponto is better.

Susan said...

Without having done any research myself, it certainly sounds like your logic is sound to me. If the Oticon abutement is well made then certainly having the ability to use both processors seems ideal. Assuming the processor is the important part, which it seems it would be. I would hope that the audiologist had good reason to order the Oticon for Harlie in the first place.

I'm so sorry this isn't easier.

Thanks for all the nice comments. I appreciate it. XOXO.