Usher Syndrome Registry
Fille Sourde I've been following The Coalition for Usher Syndrome and the blog which has been keeping us updated on research and clinical trials.They've just tweeted about the Usher Syndrome Registry - where you can register so you will "receive "information on clinical trials and the latest treatment advances. You will have access to the worldâ€™s leading experts on Us...
Tue, May 15 2012
Ear piercings and CIs
Fille Sourde I used to have several ear piercings in both ears, but now I have two cochlear implants I've had to reduce to only wearing one in each ear in the ear lobe.However I really miss not wearing a second set of earrings.The Freedom processor is too chunky to allow any more than just the one, but the N5 processor is much smaller which has lead me to wonder maybe a second ear...
Thu, May 10 2012
Fille Sourde So, my delayed report on the camp is finally here...I had a fantastic time in Australia. Just being able to meet others in similar situations were absolutely amazing because as you know already, I donâ€™t meet many here in Wellington. Everyone was really positive and full of fun, what I enjoyed the most was getting to communicate in different ways. There werenâ€™...
Mon, May 07 2012
Run & Camp
Fille Sourde Only two more sleeps till the Wellington AMI Round the Bays run! I'll be running as part of the Deafblind Wellington team but the only member doing the half marathon.This will be my first half marathon, am partly looking forward to it and partly just wanting it over and done with. I have to admit, I hate running but it is such an easy way to keep fit. I almo...
Thu, Feb 23 2012
CVs and cover letters
Fille Sourde I've been battling with this one for awhile... should you mention you're Deaf/HOH/Deafblind on job applications?I've always thought that CV and cover letters should be "selling" yourself and I didn't want to mention this incase the employer would just take one look at it and chuck it in the bin. It has been extremely hard to find work right now, but I have had three i...
Wed, Feb 08 2012
Belated Happy New Year!
Fille Sourde A very belated Happy New Year to everyone! Hope the first month has been going well for you all.A few of my new year resolutions:-> Use the phone more (in this case, my smart-phone as I don't have my own landline here)-> Update this blog more regularly. It has been a bit difficult in terms of updating as not a lot changes with both processors...
Sat, Jan 28 2012
Telecoil hooks update
Fille Sourde Ok, the update for the Telecoil hooks are as follow:They DO work on smartphones. I tried again with my smartphone which I got recently and it works. Previously I just had an ordinary mobile phone... however don't distress as there are currently people trying to make an adapter for people without smartphones to be able to hook up to the telecoil. Fi...
Sat, Dec 10 2011
One year post switch-on
Fille Sourde I'm pleased to say that my trip down to Christchurch for the one year post switch-on went really well. The audiologist adjusted both processors, trying to bring them into balance a bit more - she changed the frequency on the right (old ear) and brought down the 't' levels by more than 20 points - means I'm hearing the soft beeps a lot more! She also adjusted the new e...
Mon, Dec 05 2011
Fille Sourde Pinch and punch for the first of November :)This time last year (4th November to be more accurate) was the date I had my second CI surgery... it's amazing how fast time flies by.My left CI is improving lots, it's getting clearer but still not crystal clear - I think it would take several years. But I'm learning to recognise sounds and pick up most speech. Having both ...
Mon, Oct 31 2011
Fille Sourde It's been awhile since I last posted, I haven't forgotten about you!!I have been in a love/hate relationship with the new implant but I've now become to love it - when I'm out, I only wear the new one and when I'm at home, I wear the old one. It really changes all the time depending what situation I am in, how much practise I can get, how well I need to hear the speak...
Sun, Aug 14 2011
Have had a bad headache since I returned from Christchurch...
Fille Sourde Have had a bad headache since I returned from Christchurch but seems it has finally gone away :)The trip went pretty quick as usual, the audiologist turned both the T and C levels down and also the higher frequencies were turned down - it feels much more comfortable now and with that I should be able to wear the processor more often without having to take it off after...
Fri, Jun 10 2011
Fille Sourde Tomorrow I'm heading down to Christchurch for my six month post switch on.I still really can't tell much different to last time, I know it improves slowly but not a very significant amount. I have had some pains in the implant area but again, it'll just be the nerves being irritated from time to time.Last night I actually sat down properly to play around wit...
Tue, Jun 07 2011
Four month post S/O
Fille Sourde Going down to Christchurch was a waste of time and money, in my opinion.Flew down there and had my first appointment with the audiologist at 9.30. We just turned up the T and C levels slightly (overall, making it a bit louder) and changed the button functions on my processor. Means now I can adjust the volume on it... handy for when I forget my remote control. Only to...
Wed, Apr 06 2011
Fille Sourde It has just passed four months since my left ear was 'activated'. And I feel like I haven't experienced much (if any) change to one month ago.I have been slack though, I haven't been wearing it every day all day. The reasoning being, I don't get out enough. And the implant area hurts :( especially when I wear glasses at the same time. But the main reason... it makes m...
Sun, Apr 03 2011
Vision field test 2011
Fille Sourde I had my vision fields tested yesterday - these happen every two years. Then today I saw an eye specialist to get my eye prodded at and talk about the results. He seemed happy with everything and said there was hardly any change at all to my vision fields which is really great news :) and after looking in my eye with numbing and yellow eye drops, said everything looke...
Tue, Mar 08 2011
Fille Sourde The pain is better and I just get the occasional jab but nowhere as bad as before - guess nerves will always get irritated from time to time.The sounds in the new processor is getting clearer and clearer, I can wear it without the aide of the older one - yesterday I only wore the new one as the batteries in the other were flat and I went to run few errands in town - w...
Thu, Mar 03 2011
Pain, tinnitus and voices
Fille Sourde So, I must admit that I haven't been wearing my new processor much lately - I've been having these horrible sharp pains like a knife is stabbing me behind the ear where the implant is. It has happened before with the older one but the doctor just tells me that it is the nerves getting irritated from time to time...It's just frustrating really, I just want it to feel c...
Mon, Feb 21 2011
Fille Sourde Couldn't post last night, I was so deadly tired that by the time I went to bed I was out like a light.Woke up at 5am yesterday and took the airport bus at 6am - there were still people drinking in bars and wandering around drunk! Flight was at 6.45 and I arrived in Christchurch at 7.30.Hadn't had breakfast and couldn't be bothered wandering around finding a nice cafe ...
Thu, Feb 03 2011
Scar after three months
Fille Sourde Scar three months after surgery :) looks great!
Tue, Feb 01 2011
Problem may be solved!
Fille Sourde So, after the last blog post, I thought right, I'll inspect every millimetre of my processor - check there isn't any dust or whatnot.So I did. And I may have figured out what is wrong. Look at this photo: See this processor bit without the battery compartment - looks normal right? But after a very close-up inspection, I noticed the plastic ring has somehow been ...
Tue, Feb 01 2011
Two month post-SO
Fille Sourde Happy belated year to you all :)I'm due back down in Christchurch tomorrow for my two month post switch-on...But. A big but there... the new processor ISN'T WORKING!!I have no clue to what happened - on Sunday night I put it in the dry box as usual after having taken apart the cord and battery compartment. On Monday I put it back together and switched it on as I was h...
Tue, Feb 01 2011
Telecoil and text-to-speech
Fille Sourde As I mentioned earlier, Telecoil hooks are amazing!This is what they look like:You can get single hooks too. I find them great as they're so lightweight and everything sounds so much clearer than the older plug-in headphones. You can stick them on top or underneath the processor/s, switch the processor/s to T then you're set! I definitely recommend them. A f...
Fri, Dec 17 2010
Three weeks post switch-on
Fille Sourde It's been three weeks now... just over three weeks. Since switch-on that is.This photo is from at five weeks (last week) - this will be the last of the photos I'll show of the scar as it is healing nicely! I'm pleased with. it. The numbness have mostly disappeared which is surprising as it can take up to a year to regain feeling in that area. There is no pain when pre...
Fri, Dec 17 2010
One week after switch-on
Fille Sourde So, it's been a week since switch-on!The left ear is going well, I'm wearing the processor (without wearing the older one on the other side!) almost all day, every day. I am beginning to pick up and tell the differences between noises now, i.e. washing machine, car, jug boiling. I love it. There is still a long way to go to with getting used to the 'implant' noise and...
Wed, Dec 08 2010
Listening practise ideas?
Fille Sourde Just wanting some listening practise ideas - so far I'm using audio books but would like to do some more that I can do alone. Any ideas? Please leave them in the comments :)
Sun, Dec 05 2010
Scar update - 4.5 weeks
Fille Sourde Scar at four and a half weeks (photo is flipped):
Sun, Dec 05 2010
Fille Sourde Sorry there’s been a delay in this post, hadn’t been able to access the net.So. Like I said in the last post, everything in the ‘new’ ear sounded awful, like constant screaming. Truck? Screaming. People talking? Screaming. But I didn’t let that stop me, I wore the processor all day along with the other one and at night I would take the older one off and just listen wi...
Sat, Dec 04 2010
Fille Sourde It's on. My left ear is 'working' after nearly 11 years!It took awhile to get the activation appointment started - something to do with my surgeon "being slack and not have given any surgery information or the implant serial numbers" etc etc so the software wasn't able to be matched with my new outer piece (or processor as you call it). Thanks to my quick thinking, I ...
Tue, Nov 30 2010
Fille Sourde Can't believe it's week three already!! Only 5 more days till activation!!First up, picture on the scar + bald patch:As you can see, my hair is growing back pretty fast! And the scar is hardly that noticeable now. It is still (only very slightly) tender to touch but all, if not most, other pain has disappeared. I can sleep just fine on that ear.So to sum up,...
Wed, Nov 24 2010
Fille Sourde It's been two weeks since my op, well just over but Blogger wouldn't let me post earlier... :(I finished my course of antibiotics and the ear is definitely feeling better. The scar is looking good, it's still tender to touch especially the area where the implant is, thus I'm wearing contact lenses every day as the glasses sit on the scar. The shar...
Sat, Nov 20 2010
Fille Sourde Not a great day today, I keep experiencing really sharp pains in the implant area. At times it'll be so bad it feels like someone is poking at it with a sharp knife. This is new... only came on last night. It isn't constant but does become bothersome as it is really painful. Have just taken pain relief to see if it helps. Am thinking maybe I stretched or pul...
Mon, Nov 15 2010
Fille Sourde Scar, nine days after surgery.Still can't believe how much hair Br B took off! Oh well, it's definitely worth it.
Fri, Nov 12 2010
Fille Sourde A nosebleed caused me to wake up – it was the same as the ones I had after surgery when a little blood would just drip out of my left nostril. A headache that had been hanging around since yesterday wouldn’t allow me to go back to sleep so up I got.I upped my pain relief which helped with the head pain and also ear pain, so today was actually a good day. I even tried ...
Thu, Nov 11 2010
Fille Sourde Have just returned back from a visit to my GP for a post-op check...It turns my ear is inflamed which would explain the pain I have, so have been prescribed antibiotics. Am still taking minor pain-relief every four hours, I try not to stretch the times out as I end up suffering from sharp pains.That's the update... I am so tempted to put my right-ear process...
Wed, Nov 10 2010
Fille Sourde So, post-op. It’s been five days since surgery so allow me to recap...I was up bright and early on Wednesday morning, Mum and I flew to Christchurch via Auckland. Due to delays we only just made it to the surgeon’s private rooms in time for the pre-op appointment. He (whom I will call Dr B) went over the surgery procedure, the risks and so forth – the actual appointme...
Mon, Nov 08 2010
Surgery in two days!
Fille Sourde Yikes, it really is two more sleeps till surgery. It feels like everything has moved so fast now, Mum and I will be flying down to Christchurch tomorrow. I have a pre-op appointment with the surgeon in the afternoon then I will return to the hospital on Thursday. Surgery is scheduled as the first one after lunch so roughly at 1pm. Obviously, I have to stop eating at 7...
Mon, Nov 01 2010
Cochlear or Med-El
Fille Sourde Awhile ago when I was just planning to get a second cochlear implant, I had the option of choosing whether to have Med-El or Cochlear.Of course, I had no idea where to begin here - this was the only advice I got (same member of staff as from previous post whom has one Cochlear and one Med-El):"My Med-El device does sound different to my cochlear device in that I can h...
Mon, Oct 11 2010
Freedom or N5
Fille Sourde Today I'm going to blog on how I came to the decision of choosing Nucleus 5 rather than a Nucleus Freedom.This is my right ear with the Freedom:It is Sunday, so excuse my hair!More detailed pics of it from here:Pictures of Nucleus 5 (N5):The reasons I wanted the same (Freedom) for my left:- It would look the same, especially when my hair is tied up (which is a lot of ...
Sat, Oct 09 2010
Ushers and CIs
Fille Sourde Kia Ora, now the 30 day challenge is over, I can settle in making normal posts. Be warned though, I can be slack in making regular posts! But I'll try my best on this one, I guarantee you.So you may have picked up that I'm Deaf. To be more specific, I have Ushers - a little quotation from here states:"The major symptoms of Usher syndrome are hearing loss and an eye di...
Sat, Oct 09 2010
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