This morning we finally got to go and see the specialist who the ENT we have been seeing referred us to. Because of Chapel’s tricky anatomy we were referred out to a doctor who actually writes medical volumes on cases like Chapel’s and on surgery surrounding ear abnormalities. As our ENT told us, “If I had anyone that I feel was qualified to handle this case or the surgery for a cochlear implant, it would be this MD.”
So, we actually were able to get in to see him within a few weeks, amazingly. He believes that a cochlear implant will be successful on the left side for Chapel! He walked us through a few options for doing a cochlear implant. The first would be doing the typical surgery for an implant, however the risk of damaging her facial nerve on that side is very high. Chapel’s facial nerve actually blocks the path they need to take to run the wire into the cochlea. Because of that, it would have to be moved over. There are risks involved in moving a facial nerve. Typically it would swell, causing some facial paralysis and then go back to normal. Sometimes the paralysis can be permanent. Because of these risks the specialist does not feel that this route is ideal.
The second method would be one that is never taken when putting in a cochlear implant. Basically, the surgery would require running the wire above the typical route and slightly into the territory around the lining of the brain. As scary as this sounds, this area is worked on in surgery very commonly and the specialist also does it frequently. Essentially, they would thread the wire into the cochlea backwards and avoid crossing the path of the facial nerve. There is still some risk of damaging the facial nerve, as there is in any cochlear implant surgery, along with a very small risk of there being a brain bleed, which sounds very scary. Those risks are commonly talked through in any surgery surrounding this area. He said there was around a 5-10% risk of damaging the facial nerve.
The third option is the brain stem implant, which has a much lower success rate and sound quality and the specialist considered it a last resort. He said that it’s always ideal to use a working auditory nerve if at all possible.
Danny and I plan to allow Chapel to undergo the surgery for the cochlear implant that bypasses her facial nerve. We feel this risk is very small to give Chapel the ability to hear for a lifetime. We also know this isn’t a wait and see type deal. Cochlear implants are the most successful in small children who have an opportunity to catch up verbally, if that is the desire. The longer the wait, the more difficult language development will be. We know that we would indefinitely always wonder if we should have allowed her this opportunity. We feel this appointment has given us very good news indeed.
Next week I go to bring Chapel to a cochlear implant eval, and we will soon have another sedated CAT scan. Yes, another one. There are a few tests the specialist wants to do. After those tests they intend on scheduling the surgery for a cochlear implant! Another really amazing thing came to pass too. He referred us to another specialist in this practice who deals with nerve damage and facial paralysis. Apparently there are some things that can be done to help a person regain movement in the side of their face that suffers from paralysis due to nerve damage. This may solve some other issues we are having too.
We were sent to a pediatric opthamologist (so many doctors lately) because Chapel is not able to close the eye on her right side completely while she sleeps, and this can cause damage to the eye. Sure enough she had some scratches on that eye. Apparently, a person’s eye can become so dry while sleeping that if a small piece of dust or dirt gets into the eye it causes a scratch. We are putting ointment in her eye a couple of times a day to help with this. She also has very blurry vision in that eye, and has to wear glasses all of the time. We were told that if she does not wear them she will lose most of her vision in that eye as she has already trained herself not to use it much now.
I got some special glasses that were supposed to work and that wouldn’t stay up (turns out even goggle style glasses require ears to stay in place) but thanks to some friends sending me info and ideas, we are able to make those and another pair work for now! Her headband does a pretty great job of holding regular toddler glasses in place and I will order an adapter to work without her headbands. Because of the headband and adapter fix I also was able to find her these awesome and authentic, vintage toddler cat eye glasses. haha! IN LOVE. (Yes, they probably came from somebody’s grandma’s attic somewhere! The best things do!)
Our girl is doing awesome. She’s so curious and is an expert cabinet opener and explorer! She’s running everywhere!!