Hubs and I couldn't get over the "tiny-ness" of these things. You can't even see the electrodes. One model, I think it was Cochlear, has an implant that looks as if it is related to a squid with its double plastic looking strings with the electrode array attached at the end. All I could think about was, "This stuff is going inside my baby's head?" It's all incredibly fascinating when you look at the demo models and having the audiologist show us a model of the cochlea, which is unbelievably small.
They gave Butters a sound booth test, which we had not anticipated, but glad that it happened since they believe he is able to hear at around 40-45 decibels with his hearing aids. Not bad. Not bad at all. I also felt vindicated after this new audiologist explained that you can't turn up the volume much anymore due to the distortion of sound. I explained to her that I had been noticing much more feedback since the volume has been turned up for a second time. She informed me that he probably is hearing the feedback, but that it's not bothering him, and she went on to discuss how as he gets older, it will be much more difficult for him to distinguish speech sounds despite turning up the volume. I have had so many specialists tell me not to worry about the feedback. I had so many questions and I really had to limit them or otherwise, we would all still be sitting in that office at this very minute. I had questions about what to expect during the months afterwards, what about the possibility of infections? How long do these things last? Can he get them wet? What happens when he's an adult and has to go through airport security?
Needless to say, I am still working on "chilling out."
Butters had a great time and actually held out his arms to the speech pathologist to get her to hold him. Of course, he pulled her earring off and tried to grab her lips. It is really too early to think that my son is turning out to be a future gigolo, but sometimes I wonder.
So I will be spending the majority of my weekend going over the two pounds' worth of cochlear implant materials from all three companies. Right now, Hubs and I are seriously considering Cochlear. I have not heard much from parents who use Med-El, and AB looks great overall, but it's the new water-proof processor that you wear clipped to the outside of your body that concerns me since Butters is very active.
Any advice or experience with these companies is welcome!
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| Butters waiting to go for his implant meeting |
Which brands does your implant center have the most experience with? And the most experience in children? Those were questions I was told to ask. Soooo much to read. But the marketing stuff makes them all look good. No matter what brand you choose it will be a good choice. My CI center didn't have much experience with Med-El, though they seem to have more variety of electrodes. So for us the decision was between Cochlear and AB. We made our decision based on how much of the internal chip was being used , partially because my husband is a chip designer. But I don't think you can really go wrong!
ReplyDeleteEllen, our center uses Cochlear and Med-El. They will implant AB, they just don't use it much, something about ENT preferences. We like how the AB is completely waterproof and is supposed to be great with music sound quality, but we are not sure about clipping the Neptune processor to the outside of Butters' body. Because of Butters' cochlear malformation, Med-El provides a lot more in the way of electrode placement. We also like the design of Cochlear. So yeah, tough decision. Not to mention that it is taking me an average of about 3.5 days to go through just one company's material.
ReplyDeletePeople with implants tend to love them very much, and discussions about how to choose which one to get can turn fairly contentious.
ReplyDeleteI chose AB because it has the most room for upgrades in the implant itself. I want to keep my implant for a very long time, even if the external processors are upgraded every now and then. I've already received a couple of major software improvements. One dramatically improved music in 2007. A couple of years ago I received another that made a huge difference in noise. The great thing about that one is I don't have to switch to a special noise program - it runs all the time.
As for special electrodes, that is up to the surgeon.
Please have a look at this web site, which has lots of information, much more than just helping you to decide which implant to get.
http://cochlearimplanthelp.com/
Thank you Howard! I realize that this can be quite a touchy topic, but it certainly helps to get as much input as possible. I was able to look at the website you suggested and it was very insightful and may have made the decision a little easier, but I have noticed that all three companies seem to have pretty good track records and have received recommendations on all three from some parents. It's the electrode array situation that I am concerned about because of my son's Mondini's. Our ENT informed us that even though they were able to look at the cochleas on the MRI and CT, they still won't have a clearer picture of what type of electrodes to use until the day of surgery. This scares me a little. A lot, actually. This also makes me question why the implant center would even have us choose which implant we would like if it comes down to the ENT having to make an "executive decision." Thank you, Howard, for all of your help.
ReplyDeleteHi Eleanor,
ReplyDeleteIt may be good to get some more clarity from the doctor. I've heard of cases where the family was allowed to choose an implant, and at the time of surgery plan 'B' was used. All of this was discussed in advance.
I had the opportunity to spend a few hours with an older child yesterday, who was implanted as a baby. His speech is absolutely perfect, and he is in mainstream classes in school. About the only accommodation he has these days is an FM system in the classroom.
So relax, and be prepared to be amazed!
Just wanted to share a write up I did on brand choice. Definitely not an easy choice, but know, with whichever you choose, you can't go wrong because you are so committed and dedicated to teaching Butters to listen and speak. I agree though too with choosing a brand that your center is familiar with.
ReplyDeletehttp://www.texaskennys.blogspot.com/2012/01/ci-brand-choice.html