Wednesday, April 25, 2007

Noteworthy

This morning I had 2 messages in my inbox from parents experiencing a similar electrode problem with the same implant that Ethan has. One parent is in London and described a depressing trip to the audiologist that read almost word for word like our trip last week. Another came from a parent in Miami whose daughter lost 4 electrodes, then it became 11. She sounds very frustrated as they were told a re-implantation would be necessary, then they changed their minds and told the family that they'd just work around it.

I feel terrible for these families and what they're going through, but it feels good to know we're not alone. On the other hand, the more we learn about the shared experiences of others, the less faith I have in the implant. If they tell us they want to re-implant, I'd like to be able to have faith in the new device they are putting into his head. If there are lingering doubts about whether or not a new device will work, it makes putting Ethan through another surgery seem like a bad idea.

If Ethan had bilateral implants (like the two kids in the stories above), then going through several weeks of no hearing in the re-implanted ear would seem a lot less dramatic.

5 comments:

Drew's Mom said...

I am so sorry that you have hit another bump in the road. I hope that Cochler is able to give you some much needed answers at your appointment on the 30th. Has Ethan been better about wearing his iplant today?

These three cases make me nervous - we are having Drew implanted with the Cochlear device. Like you have said - they have such a history of reliablity. I am a bit surprised to hear of three cases of the same thing. I am curious - were all three implants done around the same time where maybe cochlear had a manufacturing problem?

Keeping you and Ethan in our prayers.

Nicole said...

Hi there!
Thanks for your comment on our Blog. I'm so sorry to hear about Ethan's implant troubles. And surprised - Aiden also has a Cochlear Freedom and I had not heard of any problems with them at all. Aiden is going for his 6 month mapping session with the Audiologist next month, and I will certainly have his electordes checked then. So, thanks for your story - I would never have asked our Audi otherwise!! Take care :>

Anonymous said...

its so sad that his electrodes arent working right if he has to be re-implanted i hope they cane give him a different device

Anonymous said...

Can you post the two stories related to yours which you recieved (with the authors permission of course!)? I am so worried that this is a manufacturing problem beginning to surface. This will make my decision to implant so much harder.

I wish you the best and take care!

Heather said...

Dear Anonymous,

If you email me I would be happy to discuss this with you in more detail. My email address is on the main page of the blog.

Given that there are literally thousands of people with this implant and I'm only able to dig up 2 other cases like ours does make it seem like a rarity.

Speaking to your implant center, the surgeon and audiologist specifically, would be a great way to get more information on your concerns. Perhaps they can attest to the reliability of the freedom implant.