Diagnosis…the First Visit to the Doctor
Finally, it’s Wednesday afternoon. Hopefully I can get an answer one way or the other, and then begin the process of either dealing with my newfound deafness or rejoicing in the fact that I was worrying for nothing. I’m generally an optimistic person but sometimes it’s easier to assume the worst so that I’m not crushed if I get bad news. This is the attitude I decide to take as we make our way to the doctor’s office.
I’ve never been to this location before, and the waiting room is empty. I’m surprised that my doctor comes to the reception desk – there’s no receptionist working. He’s a specialist and I haven’t seen him since my last visit in 2001; before that I hadn’t gone in since 1997 so I know he doesn’t recognize or remember me. That’s fine though – I really like and trust this doctor and I feel comfortable with the level of care I’ll receive. I’m really picky about my doctors – if I feel like they’re rude or rushing me or have a bad bedside manner, I drop them and look for someone else. I’m glad that I’ve already got somebody I know and trust to turn to at this time, without having the added stress of finding a doctor on top of dealing with sudden deafness.
Dave does the talking and we just go right back to the room without having to wait. I have my hearing aids in my purse – no sense wearing them when I know the first thing the doctor will do is look in my ears! He looks in both ears, very quickly. Uh oh. I had hoped for some prolonged exploration in my left ear, and then a smile and “Oh yes, you have a large amount of ear wax impacted in that ear. We’ll remove it and you should be fine!”
I can see from the look on Dave’s face that he was expecting the same thing; now he looks confused. He asks the doctor: “There’s no infection?” The doctor shakes his head. He asks me if I’ve had any dizziness or felt sick, and I explain my recent symptoms which only include one or two short, minor episodes of dizziness.
I can tell he’s not sure if I’m able to understand him so he tells me he’s going to talk to Dave, and I tell him that’s fine. As they talk, I read their lips and interject here and there. The doctor ends up including me in the conversation which makes me feel a little proud – he’s seen that I lip read well enough to get most of what he’s saying.
I’m led into another room for an audiogram. The audiologist is talking quickly and I’m surprised she doesn’t realize I’m deaf and she needs to slow down. She explains the test and then adds that she’ll be doing some word recognition testing and to “just say whatever you do hear”. I smile and tell her, “I don’t think I’m going to hear any of it.” She gives me kind of an uncomfortable smile and leaves. I almost feel like she’s afraid of me, which is weird – maybe she thinks I’m going to start crying or something.
The test begins with earplugs and pressure in each ear. A loud, vibrating hum (which I do sense in both ears). Then the usual “press this when you hear anything” test. I generally don’t hear anything during the test – I just feel the vibration of certain sounds – and I press when I feel the vibrations. In my left ear I do hear a couple of very high pitched sounds which surprises me and makes me feel a little bit better.
There’s a long period of total silence, without any vibrations or anything coming through. I look around at the walls and wonder if there are sounds coming through the headset that I’m not hearing, or if maybe she’s adjusting the equipment. Looking back now, I think this must have been the part where she was saying words that I was supposed to repeat. (Say the word HOT DOG. Say the word BALL. …etc etc)
She comes back in with the bone conduction thing which usually just makes me cringe. I notice she seems more at ease with me now – maybe seeing my degree of loss makes it easier to know how to communicate with me. She’s easier to lip read and just seems gentler somehow. She tells me NOT to push the button if I feel a vibration – only if I actually hear a sound. I brace myself for the head-shattering feeling of the bone conduction portion of the test, but I end up feeling and hearing nothing. I don’t push the button at all.
She comes back in, smiles and says, “You were right – you didn’t hear any of the words” and I grinned back at her. (Told ya so!) She tells me I now have a profound hearing loss in both ears, with the left ear being a little bit better than the right. She asks if anybody has talked to me about a cochlear implant and I tell her no, not yet. She nods and says that I would be a good candidate for one.
I go back into the room and Dave is still there. I fill him in on the test and again he just looks shocked – I know he was hoping for better news and I can see on his face that he’s feeling terrible about what’s happened. We talk briefly about the cochlear implant that the audiologist mentioned.
The doctor comes back in; the only way to describe the look on his face is “sorrowful”. I’m sure he hates this part of his job, having to tell people they are deaf and he can’t tell them why. He tells Dave again that my ears look perfectly fine – there’s no infection, no ear wax. This just happens and they don’t really know why – it could be from a virus, or just the fact that I had a progressive loss and we never realized before that it was progressive.
He tells me that there’s a small chance there could be swelling deep inside my ear, which they can’t see. Just in case, he’s starting me on a steroid regimen which would reduce that type of swelling and could restore my hearing (or some of it, anyway). He explains that I’ll start with a high dose and then taper off gradually over a period of about 11 days. He wants to see me again as soon as I’m done taking the steroids, to see if there’s been any change. I’m supposed to start the steroids the next day, because they need to be taken in the morning.
Dave asks about a cochlear implant and the doctor nods – yes, I’d be an excellent candidate for one, and it’s definitely an option for me if my hearing doesn’t return. Dave asks about cost and whether people get one implant or two, and the doctor smiles and says it’s really dependent on the insurance company. I can sense it’s a discussion he doesn’t want to get into just yet. I’m not sure if it’s because he’s busy (we are the only people in the office, but perhaps I’m the last patient of the day) or if it’s because he doesn’t want to jump the gun.
It seems more like he doesn’t want to declare this an absolute, permanent thing until I’ve tried the steroids. That’s fine with me!
I had done some research before (months ago) and found out that our state will provide hearing impaired and deaf individuals with special phones called CapTel phones. You talk into them and a relay operator types what the other person is saying into a window on the phone, which you can read. It would be perfect for both me and Dave, but to receive one you need certification from a doctor or audiologist that you are hearing impaired. We’ve had this request form floating around the house for the past couple of months and I realize hey…this is the perfect time to get it filled out!
I realize, though, that now I’m not comfortable with a CapTel phone. I can’t tell if I’m shouting or what I sound like. I’m a fast typist and really just prefer to type at this point. I decide to go with a request for a TTY instead. I’ve never even seen one before – certainly never used one – so it will be a new learning experience for me. Dave hates the phone as much as I do so I know he won’t mind using a TTY either.
I show the doctor the request form and ask if he can fill out the certification portion, which he’s happy to do. He explains that although he’s marking “permanent” on the form (under type of deafness) he really does consider it to be “intermittent” until we see how the steroids work. I think it’s nice that he takes the time to say that, to show that he hasn’t given up on me so quickly!
And with that, we are done. It’s been a very short visit, less than 45 minutes start to end. I had expected to be gone for 2 or 3 hours, at least. We get the Medrol prescription and walk out the door.
My only surprise and disappointment, looking back now, is the lack of support materials I received. I expected maybe a copied flyer or handout on how to deal with sudden deafness, resources available in the community (for instance, that phone/TTY deal which I found by accident on the internet months back). I know that I am amazingly lucky because I have a supportive family, I’m used to lip reading and can get by with that, and I work from home so I don’t have the stress of trying to do my job in an outside workplace as a suddenly-deaf adult. I wonder if I’m not offered any information because the doctor senses that I’m coping pretty well already, or is it because he wants to wait and see if it’s permanent? Still, going for 11 days as a newly deaf adult (until my next doctor’s appointment) would be terrifying for someone who can’t lip read. It seems like at least a sheet of tips on coping would be really helpful!
I talk to Dave about this and he feels that it’s a common thing – doctors want to do what they can to help your physical ailments, and move on to the next patient, with no time for helping you cope or deal with the day-to-day ramifications of your predicament. (He’s had a lot more experience with doctors and situations like this than I have.)
I also wondered if it had something to do with the fact that I wasn’t seen at the main office. This was clearly a small, “satellite” facility without even support staff. Maybe all their literature is kept at the other office. I’ll get a chance to find out on April 28, because I’ll be going there for my follow-up visit.
I’ve been on the Medrol for 5-1/2 days now with no change. I’m tapering back and am down to taking it twice a day now. I’m not disappointed – when I lost my hearing in my right ear in 1993, I did the same thing and took steroids with no change. I know it’s just a “try everything we can” approach and I’m glad for it, because it makes me feel like I really have done everything I could. I didn’t really have any confidence that it would work but I know it’s part of the treatment for sudden hearing loss.
So there it is…my first in what I suspect will be a long line of doctor’s appointments over the coming year.