All I Want **

Visiting the doctor’s office is becoming routine now. I’ve been there four times in the past month, which is more than I’ve seen any other doctor in such a short period of time. Well…maybe during the last month or so of each pregnancy I was going once a week for a checkup. Still though, that was so long ago. I’m the type of person who only goes to the doctor under drastic circumstances. I see my internist once a year for my full body work-up and that’s about it.

I’ve even begun to remember how to get there. Dave can drive somewhere once, and return to that place again five years later and still remember how he got there. It blows my mind. I don’t know if it’s the fact that he’s the driver and I’m the passenger, so I’m not paying as much attention to the streets as I am the scenery. We can drive the same route to the same place over and over and I’ll still need to consult MapQuest for the directions.

As usual, we don’t wait long in the waiting room but the wait in the examining room takes forever…more than 30 minutes. Dave and I alternately stare at the walls and make casual conversation, while watching the bottom of the door. We can see shadows there, and if the shadow stops in front of the door we know to expect the doorknob to turn and the door to open.

Every time my doctor comes in the room, he’s carrying a laptop. This always startles me – I expect him to start typing on it and then turn it towards me to read. He never does this, of course – I imagine he’s looking at an electronic version of my chart. Kim mentioned in a comment that she’s surprised more doctors for deaf and hard of hearing people don’t use CART or the Ubiduo or something similar. I agree! Dave thinks it’s because it slows things down and they don’t want to take the time. (He’s had some frustrating experiences with the medical profession in the past.) In any case, it’s business as usual, with me 100% lip reading, but my doctor is easy to lip read so I don’t stress out too much.

It turns out he thinks I asked for the visit, to ask questions about the bilateral surgery. (We scheduled this appointment because the audiologist who did my CI evaluation sent me an email telling me that the doctor wanted me to come in so he could talk to me about the bilateral surgery, recovery period, etc.) I feel put on the spot and all of the questions I’d had fly out of my head. All I can think of is to mention that I get nauseous from anesthesia. Dave steps up and starts talking, and that gives me some time to think about what I wanted to ask.

Finally, I remember. Will I have twice the amount of dizziness/vertigo with a bilateral surgery? Will I have to stay overnight in the hospital? The doctor says no to both of these questions – well, he tries not to have anybody stay overnight and they schedule the surgeries early in the morning, so unless there’s an unforeseen complication, I should go home the same day. (Thank goodness…I really can’t stand staying overnight in the hospital.)

I ask about my contact lenses/glasses. I know I can’t wear contacts for the surgery but if I can’t have my glasses on, I won’t be able to see to lip read. (I am very, very nearsighted.) He tells me I can keep my glasses on and they’ll use “signs”. (Dave and I haven’t figured out if this means actual paper signs or sign language, which would be weird since the doctor knows I don’t sign.)

But! I thought of a question now that I’m home and we’re puzzling this out. If the bilateral surgery is approved, and I have it, how do I wear the glasses in the recovery room? I know the trick about removing one arm on the side you have the surgery, so the bandage isn’t in the way. But how do I balance my glasses on my nose with both arms removed?! If anyone out there has had bilateral surgery and wears glasses, I’d love to hear how you solved this dilemma.

We receive a two page document stating the risks involved in the surgery, and things I have to either avoid completely or watch out for after surgery (mostly medical procedures that would conflict with the implant). I sign the document and Dave witnesses it. I ask about the most distressing side effect mentioned, facial paralysis. It talks about the potential of having your eyes and facial muscles affected: drooping on one side of your face or the other, or your eyelids not closing. This completely freaks me out. How do you deal with your eye not closing?! Doesn’t it dry out? (I have this thing about eyes…I can’t even imagine eye surgery or see any kind of injury to an eye without feeling like I’m going to pass out.)

We talk a little about the benefits of bilateral implants and getting the surgeries both done at once. Up til now I hadn’t been sure how the doctor and audiologist felt about simultaneous bilateral implants…they both seemed kind of reserved about it rather than enthusiastic. However, now the doctor’s enthusiasm really comes through and it makes me feel better. This is what I want…this is all I want. Bilateral implants.

I tell the doctor that I’m willing to accept the risks and would like to go ahead with bilateral surgery. Although he’s done hundreds of cochlear implant surgeries (and I feel very, very comfortable with my doctor and this practice) he’s not done many simultaneous bilateral surgeries, simply because insurance usually doesn’t approve it.

This sobers me a bit. I ask him what I should do if my insurance company (Aetna) denies bilateral surgery but approves surgery for one implant…should I appeal, or just go for one and be happy I at least got that? He says if it was him, he’d go for one.

And that’s pretty much it. The visit ends up taking about 1-1/2 hours, and a good hour of that was spent just waiting in the exam room (the doctor left the room for another 30 minutes or so while we read through the literature on the risks and side effects of surgery).

When we go to leave, we talk about with the girl at the receptionist window. I’m not sure what her job title is – she sometimes answers phones but also seems really well-versed in medical things as well and usually isn’t sitting in the receptionist area … she walks around in back and periodically comes over to help (for instance, she recommended the place we went to for my MRI). She tells us that it could be 30 days or more before they hear from the insurance company, and if we hear from them first to let the doctor’s office know.

I know my audiologist is out of the office that day (Friday) and that she needs to add the doctor’s report from this visit to her letter to the insurance company. I imagine she’ll do that tomorrow (Monday) and the letter will go in the mail either tomorrow or Tuesday, May 20. I actually had thought the letter went out right after my visit on May 7 – it wasn’t until her email to me this past Thursday that I realized it hadn’t gone out yet.

So the countdown begins in the next day or two. It’s really hard to let myself want this so much. On the one hand I’m trying to be kind of negative (“Oh, they’ll deny me and we’ll have to appeal”) so that I’m not crushed if I get a denial letter. On the other hand, I want to be positive and upbeat and excited about this. At least I have insurance! They do sometimes approval bilateral implants! Then I look closer at their company policy on bilateral implants and begin to doubt myself. The wording is not entirely positive:

There is evidence of the effectiveness of binaural cochlear implants in improving audition over uniaural (monaural) cochlear implants. A recent technology appraisal prepared by the National Institute for Health and Clinical Excellence (NICE, 2007) recommended simultaneous bilateral cochlear implantation as an option for three groups of persons with severe to profound deafness who do not receive adequate benefit from acoustic hearing aids: prelingual children, persons who are blind, and persons at risk for cochlear ossification.

At first it looks like, “Oh! They have evidence that binaural implants are effective!” Then you keep reading and…yea. I’m not in any of those three groups of individuals they say will benefit.

So I’m teetering. One minute I’m sure it will just get denied. The next I’m all, Bilateral! I’m going to have bilateral implants!

I have to say that I want them badly enough that I will probably appeal if bilateral implants are denied but they approve one implant. It will depend on the wording of the letter but I think I feel like a bit of a fight if need be.

** This is a song by Toad the Wet Sprocket. I love this song and I wish I could hear it again!!

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About wendiwendy

I'm a real-life bionic woman.

Posted on May 18, 2008, in Medical Visits and tagged . Bookmark the permalink. 3 Comments.

  1. If you insurance is denied, Letthemhear.org can do your appeal for free. They fought my insurance for over a year to get my bilateral implants. You need to visit the web site.

    Also give up the glasses. I did surgery and the next morning just put in my contact. You sleep so much of the first day, so i does not matter.

    I am so glad I did the bilateral at once. It was worth the wait for me.

    Val

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  2. I hope the doctor told you that they hook you up to a facial nerve monitor that alarms the doctor if he is too close to it. That made me feel super better. The hair shaving and the facial paraylsis was my major concern. I was hounding my doctor for percentages on the side effects LOL!

    When I brought up the possibility of doing my other ear (which I am next year) my audiologist and doctor responded very nonchalantly about the whole thing too.

    My fingers are crossed that you will be approved. May you share what kind of insurance you have? Mine is horizon bcbs and there is no way I can see my policy online on cochlear implants. In fact, they won’t even tell me if it was one of the “approved” devices on my policy. It was very annoying!

    My ears are crossed for you my dear!

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  3. Abbie, I didn’t know that about the facial nerve monitor…you’re right, it makes me feel much better to know about that! My insurance company is Aetna — the only reason I was able to find their policy on CIs is because it’s been posted a lot this year. LOL! They just recently started approving bilateral implants, I guess, and a lot of places reported that and linked to their CI policy.

    Val, I will definitely contact LetThemHear if I get denied…thank you!

    With the glasses/contacts thing, I’m more concerned with the recovery room. If I feel up to it, I’ll just put my contacts right in. If I can’t though, I won’t even be able to see to talk to the nurse, my family, etc. or to sign any release forms, etc. before I leave the hospital. Maybe I’ll stick my glasses to my nose with double-faced tape. 🙂

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