Guest guest Posted January 31, 2001 Report Share Posted January 31, 2001 In a message dated 1/31/01 5:20:36 AM US Eastern Standard Time, tricia@... writes: << Have any other implant recipients had this problem ??? >> Tricia, Yes, Tryny's implant causes eye twitching and he will grab his face and tell me it hurts. But we know the reason for his, he has a deformed facial nerve and when the device is turned on it vibrates against the nerve causing facial trauma and lots of pain (and Tryny doesn't complain with so it has to hurt a lot). We have gone through turning off electrodes and that doesn't seem to help as any time it's activated it vibrates against the nerve. The doctor isn't sure if he will ever be able to wear it as we have the volume level at the beginning stage (which means he doesn't get much noise just the stimulation vibrations) and he can't even handle that. So we don't use it on him, there is no reason to put him through that pain. But we don't see it as a defeat because we only did the surgery so that when he was older he would have the choice of sound or not. He communicates very well in sign language and even though others in the " hearing world " see his deafness as a handicap, we DON'T. That is who Tryny is. So ask your doc if when he put the implant in, he put it right up against the nerve (our doc of course didn't know about Tryny's nerve being deformed until he got in there) so we knew there may be problems afterwards. We have considered taking the implant out of his head, but it doesn't cause any problems being there so why risk an unnecessary surgery (especially when Tryny has so many necessary ones ahead). Hope I have helped some, Debra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2001 Report Share Posted January 31, 2001 Nobody ever bothers to reply to any queries I write in with, but this time I am begging for , hopefully, an answer to my sons problem. Cameron had his cochlear implant op 4 years ago. There has been a constant stream of problems. The last couple of years he has been plagued with a intermittant eye twitch which was caused by stimulation from the implant. Turning different electrodes off would eliminate the problem for a while. The last week, the twitching which used to be quick and not that noticeable, has turned into a slow - at times almost complete closure of eye - deliberate movement. And this happens whether the implant is on or off. Have any other implant recipients had this problem ??? Tricia - mumto CAmeron ( 8yrs ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2001 Report Share Posted January 31, 2001 Hi Tricia, I think we have all sent messages that received no written reply, but that I am sure people have thought about. I, as you know, have no experience with CI's, although I've been impressed with many of the success stories, including Cameron's when we were in Auckland. I'll never forget his running around with Trent, wasn't it? Anyway, I think what you're experiencing is really important information. I know, of course, that eye twitches can be a form of tics. It could have been started by something to do with CI, and then become established, which is why you see it when the CI is not on. I have also been told, but do not know if this is true, that eye twitches are caused by the ingestion of chemical toxins. Keep us informed as to how this progresses. Tim Tim Hartshorne, father of Tricia Gillbanks wrote: > Nobody ever bothers to reply to any queries I write in with, but this time I > am begging for , hopefully, an answer to my sons problem. > Cameron had his cochlear implant op 4 years ago. There has been a constant > stream of problems. The last couple of years he has been plagued with a > intermittant eye twitch which was caused by stimulation from the implant. > Turning different electrodes off would eliminate the problem for a while. > The last week, the twitching which used to be quick and not that noticeable, > has turned into a slow - at times almost complete closure of eye - > deliberate movement. And this happens whether the implant is on or off. > Have any other implant recipients had this problem ??? > > Tricia - mumto CAmeron ( 8yrs ) > > > " 5th International CHARGE Syndrome Conference, Indianapolis, Indiana, July > 20-22, 2001. Information will be available first in CHARGE Accounts, the > CHARGE Syndrome Foundation's newsletter. " > > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.