Once again everything is amazing, and I am finding that I’m hearing better all the time. One spin off from the work I am doing with my tutor for my cochlear is that I can hear better with my hearing aid now. Given that I only have 10%conversational hearing in my left ear I should be struggling but for many conversations I find I am managing much better, with just my hearing aid, than I could before. I found this out by accident. I had washed my hair so could not put my cochlear processor on. I was using just my hearing aid and when my hair was dry I went shopping. As I was finishing my shopping I realised I had not put my processor on and that I had been hearing people quite well just using my hearing aid. I was astonished! The only thing I can think of is that my brain is better at recognising what it hears!
I find it so fantastic to be able to hear so much better with my processor and it really has changed my life. I no longer dread going to the large events that I have to attend. It is still challenging but I am contributing much more and no longer feel so left out! I used to feel so miserable, sometimes sitting at the table for three hours and hardly speaking at all.
We have had many visitors and some fairly large dinner parties at home and I have cope quite well. It is different at home because one can always get up and do something (looking busy). At home I can hear the banter and sometimes the ending of jokes! And generally, feel much, more included – no longer isolated. My friends comment on how different I am and look.
I’m so grateful for my good fortune but must tell you about another friend of mine who had her cochlear implant over a year ago. It is as well to be aware of potential problems.
She has given me permission to tell you about her experience.
On 2nd October she went for her yearly assessment and additional programme and speech therapy. She thought that it was the best one that she had had as the lady cochlear audiologist that she saw was herself deaf and wearing 2 hearing aids. She thought it was fantastic to be able to say things about her experiences of having a hearing loss and the audiologist understood. A new programme was added to my friend’s mini mike so when she goes to e.g. cafes/restaurants she can set it to cut out all background noise. The audiologist also gave her other tips on using her iPad which she couldn’t wait to try. The only downside was....my friend has been having burning sensation, not as bad as it was a few months ago though.
On checking the processor site, the audiologist found the skin on her scalp has now gone very, very thin...she said magnet was toooooo strong, she put a weaker magnet on (my friend just had to make sure it didn’t come off). Her husband was shown the problem and he was asked to keep an eye on it. She had been waking with severe headaches every morning where she’d been sleeping lying on the magnet site.
9th October She hoped I was having more luck with my Cochlear than she was. She told me again that she had had her yearly assessment etc on Monday. She said the Cochlear site was burning and the magnet had been changed for weaker one….. but It wouldn’t stay on her head and it was still burning. She emailed the hospital on Sunday, and they wanted a nurse to see her ASAP. She was unable to go immediately so went the next day. Her Cochlear was still burning.
16th October Last week she had an emergency appointment and had an injection in head...it didn’t work so she had another appointment on the 17th.
18th October She said her Cochlear was driving her mad and she had another emergency appointment yesterday. The consultant that she saw called in the consultant that did her op. He decided to do two local anaesthetic injections into the bone just behind ear as he said he thought it could be a nerve that needed settling....very painful and it doesn’t seem to have worked - it’s burning!
Following the injection, after a while it did seem slightly better, although every so often it itched more than burned. She was going to see how it went.
29th November My friend is much better now and tells me that there is a Cochlear site on Facebook which is very good. She says “People discuss problems etc. I found that the burning I had been experiencing was not uncommon. I still get this sensation but now wear the magnet over my hair which acts as a little buffer but doesn’t stop it completely. Trouble is my hair has gone so thin now. It was suggested to put a bit a felt between the two magnets but I’m sure it wouldn’t stay in place.
Noise etc....I do tend to use mini mike when …… (in noisy places) and I go out to eat etc, but I can’t pin it on my husband’s t shirt, as suggested, as his chin causes interference!! I try using the ‘cafe’ setting to block out background noise but don’t find it very effective.”
I’m so relieved that she seems to be overcoming this problem and would urge anyone who has a cochlear implant to seek advice if they are worried about anything. It is always better to be safe than sorry.
Over the last 20 years I have known many people who have had cochlear implants, and this is the first I have ever heard of the burning sensation. My friend and I did not have the same make of cochlear implant or go to the same hospital but I don't think that this would make a lot of difference to our experiences.
Everyone is different – I can’t believe how lucky I have been and what a difference it has made to my life already!