A few months ago, what was a lively discussion about the marketing practices of manufacturers became a project of ten individuals around the world collaborating to demystify the world of cochlear implants. Through much bickering, wrangling, editing, censoring, researching, begging, finger-pointing, joking around became what is now known as CochlearImplantHELP.com. Below is the press release…
FOR IMMEDIATE RELEASE
Global, April 27, 2012
A Call for Help Gets Answered
CochlearImplantHELP.com, a new and comprehensive website aimed at helping current and future users of cochlear implants and their families, announces the website launch today.
A need was identified to help others better navigate their journey to receiving a cochlear implant, whether for themselves or for a family member such as their child. And cochlearimplantHELP has been created to help them wherever they are on their cochlear implant journey.
Whether just starting to learn about cochlear implants or a seasoned cochlear implant user looking for ways to connect to a favorite piece of electronic equipment, cochlearimplantHELP has what you need.
Please take a few moments to peruse the site, and feel free to link to it or share it freely. CochlearImplantHELP.com can be found on the World Wide Web at http://
I am proud to be part of this project. It is my way of giving back for those who have a hearing loss and who seek to find ways to improve it with cochlear implants. If you know of anyone who suffers from a hearing loss, please let them know about this site. Thank you and God bless.
Thank you for such a wonderful labor of love, Sam!! How would I have my blog listed as a link?
tx for the info did let me know i am not a candidate for a implant.. I have nerve loss and was born this way from german measles.. I did not wear hearing aids until out of high school , but my loss is on the edge of the hearing aid ability to help me. I hear more with them then with out and I have learned to live with my loss.. I am waiting for stem cells to replace the nerve loss for me .. I know they will have this in the future.. so i live in a very quite world of my own most of the time. I do work as a dental Hygienist so the noise of the stuff we use will not affect me much .. my close contact with people also helps because it is easy to help with the same issues most clients have.. tx again for your help.. 🙂
Lise…did you go for an evaluation to determine if you are a candidate for CIs? I don’t to dash your hopes but I did attend a conference where stem cells were discussed. Given that the procedure is controversial, there are some doubts that the FDA will approve it.
Is it just me, or is objective, non-promotional information about implants hard to come by? I’ve had my implant two years, and it’s has yet to perform as well as my surgeon and various professionals in this field predicted. Now I’m being told I need “revision” surgery. Anyone out there be through this? Would love to read some personal experiences.
Hi Noel…I am really sorry you have to undergo revision surgery. May I ask what brand you have. I know a number of people who have had it successfully and perhaps, depending on the brand I can ask them to reach out to you.
Sam, thanks much for the reply. I have a Cochlear Nucleus 5. I hear tons of sound with it but, after two years in which I worked with the company’s Sound and Way Beyond training program and did dozens of sessions with a speech therapist, I still have great difficulty deciphering spoken words. Fresh mapping typically results in sharper comprehension, but it never lasts. On several occasions I’ve lost all the gain by the time I drive the 60 miles from Atlanta to my hometown. Cochlear Americas’ chief medical officer recommended the revision. It seems likely the the replacement would be a Cochlear Freedom. Any insights you can provide will be much appreciated.
Hi Noel…I am sorry you are going through this difficult time. You might want to pose your questions on various forums and support groups. You can find these at (http://cochlearimplanthelp.com/support/)
Thanks. I’ll explore. And as for the “difficult” time, it’s mainly just frustrating.
A follow-up, Sam: I went to CochlearImplantHelp. All the available help for people who have Cochlear brand implants seems to be affilatated with the company. As usual, I find it very difficult to find any information that isn’t promotional. I actually joined one of its groups months ago. So far, 38 of the 40 messages I’ve gotten have been some sort of sales pitch.
Hi Noel…I can’t speak for Cochlear but if you join Hearing Journey which is the AB community, I think you’ll find a different outcome. However, it may not be valuable to you unless you want to consider AB. I am not sure if there are others who had revision surgery and went with another brand but you can ask that question there.