2 year bilateral cochlear implant review

31 12 2013

So I’ve been bilateral for two years. Two amazing years.

Life has taken over and I’ve been so busy that I haven’t made much time for focused rehabilitation exercises. I asked for my Advanced Bionics processors’ programming to be adjusted to include Clearvoice High with threshold levels reduced to zero, to improve sound in background noise. I asked for T-coil so I can use this with an FM system, the Phonak Roger pen system which I’m really looking forward to using in meetings. The sound field audiometry testing produced threshold responses at 10-20 dBhl, so I have excellent access to the full range of speech frequency sounds at normal conversation levels (and I can hear my neighbours next door cleaning, tidying up, talking, and their TV!). My next review is in 2 years time. I’ve been instructed to replace my T-mics every 3-6 months and the headpiece every year. Below is a comparison of my hearing before I got my cochlear implants (in blue, without hearing aids) and my hearing as it is now, with 2 cochlear implants (in red).

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How have my speech perception skills changed over the last 2 years? I was tested with the sequential right-sided implant only, and I was really quite tired on the day so I probably could have done a bit better.

2013 review

  • CUNY lipreading test – 24 sentences of varying length and complexity presented in auditory and visual condition – lipreading with sound
  • BKB sentence test – 32 short sentences of simple syntactic structure presented in auditory alone condition
  • AB word test – 30 single words of one syllable presented in auditory alone condition and scored phonemically

I am continuing to make good progress with the second implant. The BKB sentence score when using both left and right implant is 87%, comparable to one year ago. I am very happy with both implants and prefer to wear them both at the same time. It is lovely though to have an “off” switch and relax at the weekends or after a long day.

I am still using realtime captions in meetings with my little mini iPad – it’s on 4G so I can get captions anywhere I go. I love it. (You can get this remote speech-to-text service from 121 Captions) I have tried some small meetings of up to about 4 people, and can manage without captions, but it is quite tiring – and the speed at which people talk!!!!!! OMGosh!!

My tinnitus is much better than it was before implantation, and it is quite different now. It has changed from musical hallucinations and a never-ending loud barrage of random sounds to a quiet motor hum, which gets louder when I am tired, and even disappears occasionally. With my cochlear implants on, I usually don’t notice the hum. I have purchased a travel sleep sound therapy system and pillow speakers from the British Tinnitus Association. The idea is that rather than putting up with loud tinnitus, I have a short nap with my cochlear implants on, and listen to soothing sounds to reduce the tinnitus. I’ll review this sound system soon. Here’s a useful  visual guide to tinnitus.

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I continue to be amazed by what I can now hear. I can tell when it is raining, when I am sitting at my desk with the window closed. No need to stick my hand out of the window any more. I can hear the photocopier running, two rooms along. I can use the phone, calling automated systems and listening to digital voices, but strangers speak so fast that they need to be asked to slow down. The phone is still a tricky one and a lot depends on my confidence rather than my ability to hear and understand. I can hear my pesky neighbours NO PROBLEM lol. I can hear the wind outside during the recent bad weather spells.  The waves on a beach are so loud, they still shock me. I can hear traffic a few streets away, so sitting in the garden is not as quiet as it would be for a hearing person, as I am so sensitive to sound. I can hear plants growing (just kidding on that one!). I could hear the change in my dog’s breathing when he became ill. I can hear food cooking and burning, which helps my cooking skills 🙂

I am still working out some sounds, I think I have pigeons or something weird on top of my chimney – no idea what that sound is! The heating system frightened me with loud thumps until I reset it (and figured out what it was, once I had calmed down). I enjoyed running the London Marathon with my iPod and listening to crystal clear music, and chatting to strangers in the cheering crowds. I’ve been to rock concerts and really enjoyed them. Everything is still quite overwhelming but the sharp edge has come off and 99% of sounds are now bearable. I still don’t like screaming babies….uggg. Interestingly, nothing is too loud, nothing hurts and makes me cringe from the volume like the hearing aids did. The loudest sound I have heard is a thunderstorm in Gibraltar, which scared the **** out of me and I hid under the table – just like my dad used to do. I have learned that you don’t actually have to *like* a sound, and you can love a sound too. My favourite sound is the rain, it’s like a sprinkling of musical tinkles.

I use the following resources for rehab, as well as unabridged audio books. My favourites are apps targeted at non-native English speakers, which I use on my iPad or laptop. These have British accents and have very clear speakers.

The overall effect of being able to hear well is being much more relaxed about communication and meeting strangers. I can lipread and listen, and communicate with strangers very well. I have attended events and found some people very difficult to lipread, and was forced to listen to them, and surprised myself by how much I can understand. The problem I have seems to be with distance from the speaker – the further away they get, the more difficult they are to hear. I am not permanently exhausted as I used to be, and I really value my mental and physical health.  My other half is a hearing person, he doesn’t care that I have cochlear implants at all – which is a double edged sword. He’s a surgeon so he is used to all this medical mucking around. Before you ask – no, he’s not a cochlear implant surgeon – damn, I missed out on a freebie upgrade in the future! He is only too happy to use text messaging instead of the phone, he doesn’t look at me when he’s talking, and he likes to whisper sweet nothings into my ear – and in Arabic as well! (ohhhhhhh the rehab! LOL) So I have some work ahead to improve my listening skills, to keep my auditory attention “on” and try not to lipread so much. Isn’t it difficult to stop a habit, when lipreading is like breathing? It’s good to keep the challenges coming and to keep trying.

Reach for the stars, and you just might catch one.

– FYI my neighbours have just started drilling holes somewhere in their house. The CIs come off NOW! 😉

Happy New Year everyone xx





R.E.C.O.V.E.R.Y.

5 03 2010

People recover differently from cochlear implant surgery. It is wise to be as informed and well-prepared as you can, so you recover more quickly.

The side effects a patient can expect after CI surgery include;
* pressure or discomfort over the implanted ear from the bandage
* dizziness
* feeling sick to the stomach (nausea)
* disorientation or confusion for a while
* a sore throat for a while from the breathing tube used during general anesthesia

Then, a patient can expect to:
* keep the bandages on for a while
* have the bandages be stained with some blood or fluid
* go home in about a day after surgery
* have stitches for a while
* get instructions about caring for the stitches, washing the head, showering, and general care and diet
* have an appointment in about a week to the stitches removed and have the implant site examined
* have the implant “turned on” (activated) about 3-6 weeks later

(Source: FDA)

My tips;

  • Bring a hat, scarf or pashmina to wear home. My numb ear felt the cold very easily.
  • Bring a very soft pillow to sleep on. The hospital pillows are quite big and hard. They are great for sitting back on but I couldn’t sleep on them nor on the flat mattress.
  • When the nurse gives you tablets, find out what they are. I assumed I was being given painkillers when in fact they were just antibiotics, and I spent the night in pain – needlessly!
  • Bring a pad and pencil – I can almost guarantee you won’t be able to lipread the nurses and surgeon.
  • Take the arm off your glasses as your ear will be too sore. I forgot and did this AFTER my operation … and almost lost the will to live.
  • Stock up on soups as it may hurt to eat afterwards
  • Give the anaesthetist your biggest smile (I think this helps)

For the last week, I have felt dizzy, with a sore jaw, neck and throat, and was extremely tired. I could barely get out of bed. My tinnitus was like the roar of a freight train for a day after surgery, then two days later I awoke to silence. Oh …. bliss. I continued to wake up to silence for the next few days.

I went to have my stitches taken out. I saw they had a project in the waiting room, pagers available for deaf patients. I was handed a pager with instructions on a large key fob attached, saying that it would ring and vibrate to alert me. A friend happened to pass by and waited with me. A  nurse came out and happened to stand right next to me, and called out my name. The pager didn’t vibrate and I was lucky to have been able to lipread her. Not impressed!!

My surgeon is very pleased with my progress and says the ear is healing very nicely. I hadn’t washed my hair for a week, it was really icky, but I was so unwell that I just didn’t care. I had the surgical tape and eight stitches removed by a fabulous nurse – I couldn’t understand a word she said, but she was very gentle and did a super job. It didn’t hurt much at all. It looks great, doesn’t it?

On my way home, the tinnitus hit me like a ton of bricks as I was waiting to pay in a supermarket – I guess I’d had too much time to stand and stare, and Mr Tinnitus saw its opportunity to hit the bull’s eye. Otherwise, my recovery has been good.

It has helped to have lots of good wishes, comforting things and a bunch of great people around me. It’s funny to think that a week ago, I thought I could wake up and jump out of bed, and get straight back to normal.  Nooooo! I’ve had major surgery! I’ve had a hole drilled into my head! It’s gotta hurt somewhere!

I am unable to hear now from my left (implanted) ear. I don’t mind as this has always been my worse ear, and nothing made sense when listening only from that ear. I am told there is not much difference between my two ears, so hopefully I will have a good trip from activation (switch-on) day onwards. No activation date has been set yet although this is normally 3-6 weeks after the operation, to allow the area to heal. On activation day, I will be given the external transmitter part of the implant and will have my first programming session.

Knowing my luck, my activation date will be set for April 1st …. lol





C.I.B.O.R.G. D.A.Y.

27 02 2010

It’s my big day. Bye bye crappy hearing aid. Hello bionic ear. I’m calm. Still asking myself, Am I REALLY deaf enough for a cochlear implant?

THURSDAY 7AM

I got to the hospital and sat in reception, listening to my iPod with my last few minutes of bilateral hearing, until they called me upstairs to the B ward at the Royal National Throat Nose Ear hospital in London. I went through all the prep with 2 nurses – a form detailing any medical problems, and they took MRSI swabs, my blood pressure, and temperature. I met with the surgeon who marked my neck on the left side, he said the surgery should take about 2 hours. The anaesthetist also came to talk to me, then my friend Karen arrived. I chatted with her for the rest of the morning as my surgery was scheduled for 1pm.

I was totally calm and remained so for the whole CI experience – I think this was because I had done so much research and watched a video of CI surgery, and I had the courage of my convictions, I knew I was doing the right thing. This morning, on my way in, I tried listening to my iPod with just my left ear, and I couldn’t even follow the melody of my favourite U2 songs, whereas I was easily able to do this with my right ear. Rock on!

I was given a hospital gown, stockings to stop blood clots, and plastic knickers(!). Wow, this was a whole new fashion thing going! I eyed them nervously until the last minute, the nurse had to almost force me to get all that gear on. The stockings made me laugh as they have holes in the bottom of them … to tickle my feet when I wake up maybe?

THURSDAY 1PM

I walked upstairs to the operating theatre’s recovery room with a nurse and hopped onto a bed. I was to get a general anaesthetic. The nurse covered me with blankets and hooked me up to monitors, with monitor pads stuck to my chest. The anaesthetist had a huge syringe which looked like it was full of milk. He gave me the anaesthetic and looked at me …. I looked at him … he looked at me .. I started laughing and said “It’s not gonna work is it?!” then the next thing I remember is waking up, I was wide awake very quickly and they took me back to the ward with a big grin on my face. It was the best sleep ever and I wanted to do it again! My surgery had taken 4 1/2 hours.

THURSDAY 6PM

I felt very happy and wide awake. David had arrived and he and Karen had been waiting for 4 1/2 hours, they were worried as they had been told surgery would be about 2 hours. I had no pain at all apart from over the ear where the bandage was too tight – it felt as if my ear had been bent over before being bandaged up. I asked the nurse to loosen it for me and that helped a little.

The surgeon came to see me, Prof Saeed from Manchester, who has 15 years experience of CI surgeries, and I am his 294th CI patient – so that’s a very experienced CI surgeon! He said all 16 electrodes are working and the operation was perfect, he was totally thrilled. He asked me to close my eyes and smile, to check that my face is working ok. I then had dinner, I was starving by then, and I discovered that I can still taste food – I had been told I might lose my sense of taste after surgery. I showed the internal part of the cochlear implant to Karen – I had a dummy one with me – and my nurse was absolutely fascinated by it. From the moment Karen and David arrived, I didn’t stop talking, and I was chatting to Amanda and a few other friends via my Blackberry, so I feel as if my hospital stay has been a very enjoyable social event with a good sleep thrown in!

THURSDAY 11PM

I tried to settle down for the night but there were too many pillows, the ward was too warm, my stockings were tight, the bandage was hurting, the tinnitus was roaring like a freight train in my new CI ear. A nurse spoke to me about my pillows but it was dark on the ward and she is dark skinned ….. I gave up at that point! Too tired to explain good communication tactics! I eventually got to sleep after 2AM.

FRIDAY 6AM

A nurse poked me awake – grrr – to take my blood pressure and temperature. Another nurse came to take the bandage off and she pointed out a big swollen bruise on my chest which I hadn’t noticed. Must have got that when the surgeon had to put his foot on me to keep me down …

I had breakfast of cornflakes, tea and toast. I went back to sleep and woke to see Karen there. The nurse removed the tubes and needles from my hand and we headed off to the xray department, where they xrayed my head. The xray is to check the CI has been put in the right place. I collected my discharge note, sick certificate, and confirmed my checkup date. I got dressed and had a quick lunch, then we left for home.

FRIDAY 1PM : Home 🙂

I was able to walk and my balance was good, but I felt quite unreal and had to walk slowly. I wore a pashmina to cover up the crazy hair, I’m not allowed to wash it for a week. The pashmina worked well as it was light and comfortable. The scar looks good, it’s a lot smaller than I thought it would be, and my hair will cover it anyway. I think it looks like a very professional job.

There isn’t any pain in the ear itself. The ear is numb and it’s sore going down the neck, and I have a sore throat/jaw/shoulders/head, bruises on the back of head and chest, it hurts to turn over or to get up, I feel like I’ve done 500 situps, but overall, the operation is a breeze really, and I wouldn’t have any qualms in going through it again for a 2nd CI if I go for that. I’d get to have another go at the drugs and pants thing. I think the worse thing was the tinnitus yesterday, I didn’t expect it to get worse, and to the level that it did, of a freight train, so that was a shocker.

What I found difficult during my hospital stay was communication with the nurses and surgeon – they were foreign and I couldn’t lipread them. Luckily, David can sign so he translated for me. It’s a shame the nurses and doctors don’t get deaf awareness training. It really is so important, so that the patient has a better hospital experience – it’s not just about the medical support, it’s about the holistic support. The psychological aspect is important as well. It’s like yin and yang. I had to constantly ask nurses to repeat, to look at me when speaking, to write it down. It was so frustrating and tiring.

SATURDAY

I woke up to an amazing thing …. silence. No tinnitus! It has been coming and going today but it’s quieter than yesterday. At this moment, as I am writing this, there is silence. It is bliss. I have had constant tinnitus all of my life and it really sucks, but you can’t do anything about it except learn to live with it. I managed to get 7 hours sleep and I feel much more clear headed today. Physically I am really aching and don’t feel up to doing anything. The numbness on the left side of my tongue has gone away and my lips are becoming less numb. I’m amazed at how much better I feel.

I’m really happy because it was a good surgery and the surgeon was thrilled, and by having the CI on the worse ear, I had nothing to lose and so much to gain. It really helped to have such great support throughout from my friends that have CIs, they have been through it themselves and are great at offering reassurance and advice. My hearing dog Smudge was totally spoiled when I was in hospital, he really enjoyed all the fuss, new toys and treats, and is probably wondering when I’m going away again!

I’m so unbelievably TIRED, but I am a very happy bunny! For now, it’s back to the sofa for tea and chocolate biscuits…





Stress and tinnitus

7 02 2010

Ulf dedicated a blog post to me on his tinnitus management …. thanks Ulf! Ulf has a very scientific viewpoint and I’m sure his journey on his tinnitus management course will make for very interesting reading. I have had tinnitus all my life and it has been particularly bad for the last 2 or 3 years, and it seems to be getting worse. There’s not much that can be done about tinnitus medically. I think the battle is a psychological one. Hopefully my cochlear implant will make it go away as my brain works hard at decoding sound and has less time for generating white noise to fill the hole my hearing loss has left behind.

Ulf was recently given 2 cochlear implants and writes about his experiences on his blog Becoming Deaf in Norway 2007.

Ulf > Stress and tinnitus





Sounds – imagined and real

27 10 2009

This story illustrates the nightmare of tinnitus and noise sensitivity known as The Hum. Article after the jump with some interesting comments.

I find my best coping tactics with tinnitus have been a few painkillers and a nap, trying to be philosophical about it so I stay in a calmer frame of mind, having a low noise source to take away my mind’s focus on the tinnitus, and keeping busy so I am distracted. It’s always worth talking to your doctor and audiologist.





Alleviate your tinnitus

20 10 2009

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My tinnitus has been particularly bad for the last 2 years and it’s horrible. It’s as if I’m listening to a constant concert with a crap conductor. My audiologist has recommended I try a tinnitus retraining course and I’ve agreed to give it a go. If I get the go-ahead for the cochlear implant, the hole drilled into my head will very likely decrease my tinnitus or even make it disappear completely. But yeah, there is that hole in the head first. So I was very interested to hear about this particular tinnitus alleviation treatment.

A young company called Restored Hearing Ltd, based in Sligo Ireland, had their first major breakthrough with a competition project in sound therapy for tinnitus sufferers in 2009. They developed a therapy for temporary tinnitus sufferers, i.e. concert-goers or those who listen to an mp3 player.

They say “After one minute of our therapy 99% of the candidates that we tested said that their tinnitus was gone. The project received huge attention from tinnitus sufferers and sympathisers alike and we were fortunate enough to receive 2nd prize overall in the competition and to win an award for medical innovation too.”

Restored Hearing say their therapy can also provide some relief from tinnitus for those with hearing impairments. If you wear a hearing aid, they advise you take it out and wear the headphones. It will work – get this – even though you won’t be able to hear it.

This sounds like quack-a-doodle to me. I’m going to try this though, what harm can it do? Tempted? You’ll need €2.50, a pair of headphones, and internet connection to access the customised one-minute therapy session at Restored Hearing. If you fancy trying this therapy, do let us have your feedback. I’m all ears!!





New tinnitus blog

7 02 2009

Do you sometimes wonder how other people manage to cope with their tinnitus?
Could you make small changes that would make your life more bearable?
Could you get more help for your tinnitus on the NHS?

Coping with the debilitating condition of tinnitus could become that bit easier thanks to a new blog from Deafness Research UK.

The blog marks National Tinnitus Week (9th-15th February) and will initially involve three Deafness Research UK supporters talking frankly about how they cope with their tinnitus on a daily basis. Meet Kate, John and Gemma who, contrary to the usual advice of trying not to dwell on the symptoms, are focusing on their tinnitus in order to help others learn from their experiences and cope with tinnitus better.

My tinnitus has improved quite a bit over the last few days. For the last 5 months, it has been much louder in my left ear than it has ever been. It’s been really annoying and makes me feel more tired and stressed. I moved house recently and having said good riddance to an irritating flatmate and his nasty overbearing bully of a mother, who never seemed to stop popping in, emailing and ringing me, I feel much more relaxed in my new home. I actually feel AT home. My tinnitus has unexpectedly improved and I’m really pleased! It’ll never go away though, I’ve had it all my life and it’s just a part of me. So I’ve learned that managing my environment can affect my tinnitus. Useful tip!