I just talked with Dr. L. awhile ago. He was calling me back to answer some questions we had. Since he was at a conference and then trying to get caught up, it took awhile for him to get back to us.
First we discussed Audrena's risk factors for meningitis and the risk of facial nerve paralysis with the surgery. I'm relieved to hear that it is as we thought--those are not things that should keep us from going forward with the implants. The risk is still relatively small, especially because we do vaccinate on schedule. He has done at least 800 cochlear implant surgeries, and he has never had an issue with the facial nerve. Yes, these things are still risks, but even though they're low he still has to inform us.
We discussed Audrena's vestibular issues. He explained to me that a normal person has 3 semicircular canals, and she is missing 2 of them. The only one that formed is the superior semicircular canal. As a result, she'll be unsteady, and she'll have to use visual cues to be able to walk. He had explained that before, but now that I know exactly what the problem is, I'm a little more worried. I haven't had a whole lot of luck with finding information on how the absence of the other 2 canals will affect her. What I have found is that those canals control things like vertigo and posture, so I'm worried that her little world has been spinning and we don't know it. It's amazing what we take for granted. As part of the cochlear implant team's evaluations, she will undergo vestibular testing. I'm scared of what we'll find out, but I'm also looking forward to knowing more so that we know how to help her. I've said it before. Knowledge is power. In cases like this, when I don't know anything about what I'm facing, I feel weak and scared. I would just like to curl up in a ball and cry. So instead, I gather as much information as I can. I educate myself. If I know what I'm facing, if I have a game plan, then I deal much better with the situation. The problem right now is that I don't know, and I can't seem to find the information I need. So if anyone out there has experience with what happens when a person just doesn't have all 3 semicircular canals, please share it with me! Educate me.
As part of the discussion, I asked whether we would just treat any ear infections the same, using the Ciprodex drops. He explained that during the surgery, he would take Audrena's tubes out and patch the holes. That's when I essentially went, "Wait. I have big concerns with that." Audrena was very wobbly before her tube surgery. She had so much fluid built up that she was late to sit or crawl. She would steady herself with one hand while she sat. She army crawled to get around. After the tubes were put in, she stopped using her hands to steady herself, she crawled, and she began to cruise around the furniture. It was a HUGE improvement. Given that she has these vestibular abnormalities, I feel like she needs the tubes to keep the fluid at bay. He said what I already knew, that the tubes are an access point for bacteria. But he did say that he would consult with other surgeons around the country via e-mail to see what they would recommend in this situation.
He did reiterate that Audrena has other issues that will make surgery more challenging for him. She has small mastoids, which is where the implants are attached and where they drill to gain access for the electrode array. The auditory nerve canal opening is larger than normal, causing the potential for a spinal fluid leak which would have to be packed with tissue, and the auditory nerve canal narrows to a narrower-than-normal size. He did say that these are things he can deal with, but it does make things a challenge.
Now to the hearing aid trials. The cochlear implant team will meet today to review Audrena's case. They will discuss when to start the hearing aid trials and how long we will need them. That may determine whether we will be able to get them from USD, or whether we will need to get them from Boys Town.
I am just feeling a bit overwhelmed today. Some days are good. Some days I wonder how we will ever tackle all of this and get past it. Today is just an overwhelming day. But in the midst of this, I'm extremely thankful that we have a doctor (and a nurse) who is willing to take extra time to talk with us. He had patients waiting for him, yet he made sure my questions were answered. I'm SO grateful for that, and I do remember that when we are the waiting patients.
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