2 months after Op - update

Have been back with my family, in Tokyo, for almost a month now.  Quick update.

Balance:  Slowly and steadily getting better.   My eyes and feet control things now, but even in the dusk I can walk ok.   I went swimming and running for the first time last week.   Neither very elegant but who cares.  This is a huge result and boost for my confidence.  

Bobbing eyes:  Like balance, my brain is re-routing and slowly getting control via alternate neural pathways.  

Hearing:  How ironic to find things are now often too noisy.   Struggling with background noise and higher pitched tones.  I had hoped to hear Ulrica and the kids voices better.  Its makes me sad to see their frustration when I get stuck on a word.  My 7 year old sometimes just pretends to speak, which breaks my heart.  Have started speech therapy from the beginning with Ulrica, looking to tune my ears into their tone.  "bat/mat, date/tate, share/chair etc, etc".  I have started reading to myself with just the bad ear turned on - forcing the brain to work this side.

Tinnitus is a tough one.  When the hairs inside your cochlear are damaged, they send random electrical impulses, which the brain interprets as sound.  This is a common problem with old age, as cochlear hairs degenerate.  The severity and range of "sounds" is proportional to the hair damage.  My tinnitus is unfortunately getting worse.  I now have noise 24hrs a day.  Bells, whistles and hums so loud, they shake my skull.  First thing in the morning is the quietest and getting out of bed has a new downside, the noise starts. There is no clear medicinal help.   I just need to de sensitive these signals - just like living next to a motorway.   It's a harder fight that physical pain.

Rehab now is swimming, running, walking with fixed focus.  My good friend Sarah took me to meditate with the Moto Azabu monks.  I think meditation and hypnotherapy are well worth exploring further, for the tinnitus.

Still off work.  My Japanese colleagues made me a "Senbazuru".  A thousand, hand made paper cranes, stitched together.  The legend says who ever gives this gift has their wish granted for that person.  It is one of the most touching gifts I have ever received.

Overall - the journey will be a long one but spirits are still good.

Back to Japan

Flying back home this morning. I had a tune up on Wednesday but they can't do much more with the electronics now. The upside from here is hard rehab getting the brain to understand new sounds. There are 43 speech sounds and 28 ways to make them. This is now the focus.


Feelings
I am returning with less than hoped for but in better shape for sure. Back to Ulrica and the girls, the dog and Tokyo friends for big hugs (and a few beers).

Tinnitus

From a small hum to the bells and whistles of a full blown football match. The CI, for me, amplifies this not reduces the tinnitus. This is another set back. Maybe because I have only partial electrodes implanted. There seems no escape and its sometimes literally maddening.

Today things went off the charts.

Yoga, meditation may be the answer.

My speech and mapping therapists keep warning me about the depression I am facing once the adrenaline fades.
I think I am different, but they say they have seen this before. It's not very helpful advice for me.

I was walking down a cobbled street, and thinking this sucked for my balance. In the opposite direction a kid was being pushed on the cobbles, in his wheelchair, clear thinking the cobbles sucked too. On the Global scale of crappy things, I cant complain.

Speech Therapy

Mental Mapping of Sounds.
The brain knows what a tap running, a bus, or the phone ringing sounds like. Now it is getting beeps and hums instead. My rehab is to focus on the stimuli so the brain starts mapping these together. I have a check list of around 100 everyday sounds. First check I can "hear" something, next check if / when I recognise it (seeing a dog bark is different to a dog barking behind you, and knowing its a dog).

Lip Reading or Speech Reading.
A CI can not hear certain sounds. Lip reading can not differentiate certain lip movements. They work well together.

Lip reading focusses on three properties of sound:-
1. Manner - how it is made. e.g.
-Explosive "p,b,t,d,k,g",
-Friction "s,z,f,v,sh" or
-Nasal "m,n,ing"
2. Place of Production. e.g. lips together "p,b,m,w", or tongue and teeth e.g. "th".
3. Voiced or Not. e.g "b vs p"

CI Hearing Class.
Learning to hear with the CI - no lip reading clues.
First identify which sound groups you have difficulties and work on these. For me examples of sound groups are "pea vs key, pick vs tick, tear vs care; pill vs bill ; tart vs dart, ought vs sought, sue vs zoo; day vs nay"

Lip Reading Class
Easiest to lip read
P,B,M; W,Wh; F,V; Sh, Ch; Th; L
Hardest to lip read
K,G; S,Z; T,D,N; R.

Therapist reads out lines from a story. I repeat back. We have just finished "The Emperor's New Clothes".


Pretty humbling but there is only upside.

Second Tune Up

5 electrodes now working on the left but still on low power settings. Facial nerve twitching with any more electrodes or higher power setting. The right side is unchanged with 4 out of 12 electrodes working. Not much hope to improve from here. Future tune ups will be tweaks. The doc doesn't see a surgical or technology route, to stop the twitching. It is because of viral damage to the cochlear bones and / or the auditory nerve cells.

Still I am out of the "Land of Silent".
My brain should unravel more electronic sounds over the coming months and with better lip reading, one to one communication will be much easier.

Hoping to get back to my family for the end of next week and start life again. A little different but still very good.

Switch On + 2 days

Similar to post surgery, the 48 hours post "switch on" were pretty glum.

Now back on track and recognise that every week is still better than the last. That can't be so bad.

The ear I have "working" will never perform well but its already given me some connectivity. I can hear some sounds especially tapping or knocking e.g. knocking on the door of the house, the level of my voice, footsteps - all breakthroughs.

Also balance is getting better. Had another successful, solo trip round town.

Have got a technician from the implant manufacturer Med El taking a look at my case on Tuesday evening. Maybe he can find a program setting to get the "good" ear working.

Over the next two weeks I have 9 hours speech therapy, 6 hours software mapping and 4 hours balance therapy. Plus homework. Its starting again from scratch and each step fwds is a big motivation.

Gloom over. Life will still be a lot of fun.

Switch On Day

Very nervous. I am part of a Cochlear Implant group. Whenever a member switches on, they post results. It is such a range, from just bleeps to recognising words. But the theme is stick with it and it gets better.
The group site is the best source of info and support I have found yet.
ciug2004@yahoogroups.com

I can imagine it's very different mentally, depending where you are coming from. E.g. partially deaf give up any residual hearing and use of hearing aids, to risk that CI will be better. There is no going back.
I was hearing just 2 months ago but now have zero. Anything is better for me, but also may be too hopeful.

I have been sent this You Tube link a few times and is a heartwarming switch on. The girl had been deaf since birth. It's not a CI but similar, using ear drum vibrations. Just shows medical technology working nicely.

http://www.youtube.com/watch?v=vjU9U81O1n8&feature=youtube_gdata_player


Switch on results.
Each electrode was individually set to "loud but bearable". Then they turn on.
Unfortunately the left ear, with 12 electrodes, is barely working. Any higher settings makes my face nerves twitch. The right ear, with four electrodes, is working much better but with clearly limited capacity. So right now I can hear metallic vibrations but 99% from the right ear.
Therapist said "it is not a brilliant start" but she would take advice on how to work more with the left ear's settings. Next software mapping session is Monday.

Until then practice.
Focus on hearing familiar sounds eg light switch, tap, car etc.
Also buy two new papers and follow friends reading paragraphs aloud.
Human sound better to train with than TV etc as more 3D.

1 week to Switch On

Positive again. I was surprised how mentally knocked I was by the operation.

Stitches out and CT scan later this week and if all well, "switch on" next Wednesday.
Have been warned to keep expectations low. Initial hearing could be indiscernible noise with a long road ahead.

I can imagine how the brain turns mechanical sounds into mostly "real" sounds eventually. I often "hear" friends voices when lip reading or TV theme music. The brain throws in what "should" be happening.

Had a solo trip out the day before operation. Went for a deaf haircut. A scary experience, especially crossing the road. Change of surface levels, multi directional viewing, crowds, no danger sounds and genuine risk. Can now appreciate how older people can lose confidence in a similar environment.
(My 77yr old Mum is actually a lot more stable than me right now!)

Pre op I fell over in the gym and landed on my head. You just don't know you are going over until you hit the deck. It made an interesting "brain sound" like a steel tube being struck - hurt just the same though.

Rehab Going well, with gentle improvement. Will step this up when stronger.

E.g.
Standing on one leg
Foot to toe walking
Two ball juggling
Eye control - left right, up down, near far.
Reading signs and number plates, when walking, seems to be a good all round exercise.

Operation Results

Left Cochlear.
Successful insertion of 12 electrode length. Good electric response from all nodes.

Right Cochlear.
Already scar tissue and new bone growth inside. Only 5 electrode length inserted. Poor signal response from all.

Eyes bobbing a bit more.
Balance about the same.
Taste very metallic (probably last 4 weeks).
Doc advised taking a lip reading course. More inputs the better for communication.

I cleared my nose and felt the back of my scalp lift and a nose bleed. Not pleasant. Now have notes on bathroom mirror. "don't blow nose"

Feelings..
Mixed - glad to have one success and sorry to have missed one. Feel daunted about the next steps. Pretty beaten up after surgery, better spirits tomorrow.

Day after and some rest.
Positive again. Still have a very good chance to hear again.

Operation Tomorrow

Preparation.
Royal National Nose Ear and Throat Hospital. London WC1.

Hearing tests...
Audio, bone conduction and a new one:- Auditory nerve function
To measure residual hearing.

Psychological readiness...
Managing expectations. It doesn't always work. Also often cases of being deaf for a short time, there is an emotional crash.
I can see this possibility.

Implant Choice.
Med El, surgeon wants better selection of electrode lengths, depending on the scarring.

Rehab...
"Turn On" 2-3 weeks after surgery.
4-6 weeks rehab involving:-
-Speech therapy.
-Hearing training.
-Implant software mapping.
Training and improvement up to 9-12mths.


Tests showed residual hearing absolute Zero. i.e. virus may have destroyed the auditory nerves. Measles and Mumps can do this. So further tested with electrodes.
If no auditory nerve function = no CI implant.

Test..
Electrodes inserted under local anaesthetic. Left ear - almost gave up looking, some throat spasm, then a small crackle of static. Right ear "crackled" straight away.
This was the most scary point so far.

So Operation is back on.
Friday 23 Sep. Overnight stay.

Operation notes:-
Some hair shaved with incision behind ear. Stitches out in one week. Post op CT after a few days. Meningitis shot after 2 weeks (ideally 1 month before).
Operation time approx 3 1/2 hours.

Risks
1. Facial Nerve Injury - 1/300
2. Infection - the biggest risk and often leads to removal and later re implant - 1/50 (antibiotics taken during and post op).
3. Device failure - 1/500
4. Balance, taste, sensation loss, but all these should recover.

This is it. Pretty scared.

London Doctors. Week 6

Kawano-san was professional and skilled but language, Japanese medical system and post operative therapy meant London is better for me.
Many thanks to Miwa-san for her insight to the CI industry in Japan.

Meeting with Professor Saeed. 107 Harley St, London.
Very, very comfortable to be under his care.
Cochlear scarring is advancing. He wants to operate asap. Can only tell for certain if an implant is possible by trying. Putting his team together and plans to operate within two weeks. He first uses a dummy implant to see possible depth of insertion. Med El offer a half size implant, where necessary - clearly half the electrodes. AB have just one size. Cochlear not in play after recall. Meeting his "scientist" on Monday as part of pre-op preparation.

Re balance and eye bobbing.
Doctor advised treadmill work - just keep practicing. Have been doing hours of street walking, with a stick and holding onto Ulrica (shopping) trying to reset balance and focus. Week to week seeing small improvements. There is a chance that the operation knocks the balance out further.

Tokyo Doctors. Tokyo Medical University

Dr.Kawano. Tokyo Medical University.

TMU a little scary and very non "Harley street", however Kawano-san was good to deal with and highly recommended in the CI field.  Special thanks to Shima-san for  handling the Japanese side.  Cochlears are still open for an operation. But no operation slots for 2.5 weeks.  So with time tight may be back to London - checking their timetable.  

Cohlear co's implant CI500 series was globally recalled this week.  This takes the market leader, with the best track record, out somewhat.  These implants are in your head for life, recalls are worrying.  

 MRI showed granulation i.e. start of ossification in both cochlears. Noted inflammation in neck glands, suggested steroid injection effect but also tested for mumps, as maybe the virus behind all this. 

 Choice of implants.
He favours Med El "Concerto" due to the length of coil but because it is
thinner, it may not insert due to the granulation.  So try the Med El and if not possible, go with Cochlear "Comfort" (CI 500 series now recalled).  Japan doesn't offer Advanced Bionics so no real view but felt in between Med El and Cochlear for sound performance.  Commented Advanced Bionics is an "analogue" rather than "digital" system which makes listening to music better.

Feelings..

Huge relief that implants are still possible.  Now a little panicked about the timeline. How will ossification progress over 2.5 weeks, if I cant get an operation elsewhere.  

Apparently no "nagging" or "kids asking for money" filters on any implant brands yet. 

A note on Cochlear Implants – the basics

Like most hearing people I had no idea that technology had advanced to the point  deaf people could “hear” from bionic implants.  Recently deaf like myself, as well as born deaf.  

The external hardware is getting smaller and better.   In a few years it will all be internal.


The basics...


Hearing aid vs Cochlear Implant..
A hearing aid amplifies sound.  I.e. you need some middle ear and inner ear functionality or it doesn't work.
A CI sends electrical signals direct to the cochlear.   The brain interprets these as sounds.   So no hearing is needed.

The bits..
Implanted:-   Electrodes are threaded through your cochlear spiral.  These lead back to a transmitter just under the skin, behind the ear.
The main performance factors are

Worn on the head:-  A sound receiver  / processor, behind your ear, converts sound to electric signals and delivers through the skin, via magnetic induction to the inside bits. 


Implant performance factors
1. Length.  The cochlear picks up high to low frequencies along its length.  The greater the coverage the greater the range of frequency possible. 
2. Number of Electrodes.  The more electrodes the more individual "notes". 
3. The electrode spacing / focus of stimulation.  The stimulation can fan out and excite other neighboring areas causing noise. 


Note the health of residual auditory nerve cells is key.  Without these the best implant still won't work. 

Expectations / Success of CI..
It can range from zero to almost perfect hearing use.   In between is helping to lip read or hear danger alerts.    


Surgery timetable.
Implant surgery.  Hospital stay 1-2 days US and UK.   7 days Japan.   
2-4 weeks later external hardware is added.   Techician works on software to optimize initial hearing.  Rehab training starts to build on brains interpreting skills,  6-12 months later still seeing improvements.

Surgery limits.
Bone growth after infection may have sealed the cochlear.  Drilling has its limits.

Impact on residual hearing.
High risk of destroying the chance of hearing  naturally again, due to the damage to the residual cochlean hairs. 

Note on Tinitus

It was a surprise that being deafened did not mean "quiet".   The noise in my head ranges from the loud hum of a ships engine to a world cup football match with horns blaring.  Seems to get louder with stress and exertion.   A doctor explained the brian was looking for missing signals.  Over time the brain may push this noise into the background.  I understand that Cochlear Implants which restore a signal, will also kill the Tinitus.

Note on alternatives to Cochlear Implants

Stem Cell
Mammals cannot re-grow damaged hairs with the Cochlear.   In ten years time this may be possible, via stem cell therapy.   Cochlear implant surgery pretty much wipes out any chance of this in the future.  At my age, 10 years is too long, so not a factor for me to consider. 

Brain Implants
Like Cochlear Implant but the internal “wires” stimulate the brain directly.  Early days and provides very limited sound quality so far.   Although can be the only hearing option available.    Prof Saeed at University College London is pushing research in this field. 

Sep 2011. Tokyo Doctors Week Four.

1. Ogawa-san.  Keio University Hospital.
Re tested hearing – all negative.  Unfortunately right ear is still infected raising the likelihood this cochlear will be damaged. 
Prescribed Oral steroids and oral antibiotics for 5 days.   Booked CT and MRI scans within 3 days.   Surprisingly advised left side side and later the right CI surgery.  Japan only offers Cochlear and Med El brands.     Cost in Japam around $40,000 per ear.  Similar to US and UK.

2. Kawano-san.  Tokyo Medical University - seeing on Monday
TMU and Toranomon Hopsitals are the leaders in CI surgery in Japan (Keio University may be better for middle ear issues).  Dr. Kanawa and Kumakawa respectively, were highly recommended CI surgeons, from these Hospitals. 


3. Prof Yamasoba. University of Tokyo Hospital.   
Also very highly rated but this info was late to me.  Dr.Kashio is the main CI surgoen in this team.   

Note on Cochlear Implant Manufacture Choice

There are four companies

Cochlear - Australian - market leader 75%
Med El - Austria, Europe 15%
Advanced Bionics - American, though acquired by Swiss Sonova in 2009 10%
Neurelec MXM - Less well known 

So far my Spanish, London and Japanese doctors have said there is little to choose between them.   Most patients pick on appearance.  In Japan only Cochlear and Med El are offered.  

Advanced Bionics looks interesting with new products such as HiRes, free software upgrades and waterproof head wear.  But I find it impossible to know how much is slick marketing vs. technological advantage.   It's a decision that needs making within weeks, so any advice here appreciated.  AB has had recall issues with implants.


Cochlear feels the safer bet as current market leader and proven track record. 


Kind of ironic after mentally going with the Cochlear 500 series it was recalled the same day.  


AB will shortly re enter the US market with HiRes, it has already done so in Europe. 


Saw first surgeon today that had a view on brands,  favouring Med El Concerto due to the length of coil but because it is thinner sometimes difficult to insert.  If Med El not possible, he would go with Cochlear Comfort (the CI 500 series now recalled).  Japan doesnt offer Advanced Bionics so he had no real view, but felt they were in between Med El and Cochlear for sound performance.



In the end... My first choice was AB. More stylish outer wear, up coming waterproof Neptune processor, possibly better music appreciation. However on advice from my surgeon we went with Med El. Having the choice of implant length is optimal. The Med El outside bits were much smaller than I epecetd and most users ignore the remote control in day to day use.

Note on "mechanical" middle and "neural" inner ear.

1. The middle ear is "mechanical" (basically three bones passing sound

waves to the inner ear) and its workings can be blocked by gunk.

2. The inner ear takes these sound waves and pass them along fluid,

inside the spiral shaped cochlear. Tiny hairs convert these movement to electric impulses and fire to the brain. So the inner ear is "neural" . The inner ear also has "semi circular canals" which control balance.  So inner ear trouble typical involves both hearing and balance issues.

Sep 2011. London Doctors Week Three.

1. Mr Graham.  150 Harley Street.  

Very clear with feedback.  Runs a Cochlear implant program.

Said unlikely for hearing to return. Must now be very careful about how the cochlea heals, after being inflamed.  There is a chance of new bone growth sealing them and preventing cochlear implant surgery.  Monitor via MRI scans and if signs of ossification then the operation becomes urgent. Ossification can occur within 4-6 weeks of infection.
I still have infection in my right ear, the left ear is clearing. 

On the balance side – I have "bobbing oscillospia" – i.e. my eyes have lost the ability to auto track my head movements, so they wobble around.  This blurs the world on movement – for me anything past 3 meters.  Also simple balance is still a problem.   These conditions are separate.   The balance organs may not heal but the brain and the rest of the body can learn to adapt.   Time will see on this but looking into Physio Therapy.  Balance is cognitively very deep and learnt as a toddler, so takes a while to re-train the brain.

2. Mr Narula. Princes Grace Hospital

A pleasure to deal with and clearly knows his stuff.  Also took care to consult with fellow specialists about his choices.  His CI implant surgeon of choice is Shak Saeed.  He agreed with Mr.Graham but thought steroid shots, into the ears could help.    Mainly to reduce scarring as they heal and lower ossification risk.   His approach is to try everything, if there is a chance it can help.  Stayed in London 1 extra week for these shots.  First was under general anesthetic (so they could have a good poke around) second under local.   He didn't conduct MRI as too soon with current inflammation. He advised Bi-lateral CI surgery as the best course.

Feelings

Now I accept I am permanently deaf and my previous worst-case scenario of implants, may be at risk.  Seems the worst cases are getting worse. My family life and work are in Tokyo.  Both London doctors agreed this was a good place to receive implant surgery. My brother gave me a good phrase “adapt and survive”.   A few tears but not so bad, kind of feel that people get sick and bad things happen whatever – this one isn't going to  kill me. 

Note on hearing tests

I have had 6 types
1. Basic Auditory – i.e. headphones – test overall hearing.
2. Tympanogram – measures middle ear functionality.
3. Bone conduction – headphone style but the “sound” is conducted into the bonebehind the ear. Tests Cochlearfunctionality as by-passes middle ear
4. OAE. Otoacoustic Emissions – Tests Cochlear functionality 5. Auditory Nerve Hearing Test - three stick on electrodes, on your forehead and behind your ears, look for brain signals from headphone noise. Shows if any hearing is getting through. 6. Auditory Nerve Function Test - wire electrodes are inserted into each ear under local anesthetic and current is passed into the inner ear. I heard a "crackling" sound and some numbness of the throat. Shows that the Auditory nerve can still pass signals to the brain. Note though the results of this test ie how much crackling are not a good guide to the overall success of a cochlear implant.

August 2011 Spanish Doctors Week Two.

Saw ENT specialist Dr Tomas Barbaran at Clinica Juaneda, Palma de Mallorca. Syringed ears then performed auditory tests, which showed zero response from middle and inner ears.     Admitted to the clinic immediately and treated with Acyclovir, oral steroids and Augementin over the next five days.   Blood tests, MRI and Lumbar puncture results all normal (these ruled out the nasties like tumor, meningitis etc). 

Feelings.

There is some chance I will hear again. Worst case Cochlear implants.   Balance and long-sighted vision is shot but feel this will come back.   Kids are un-phased – this is a big relief.  Sign language is more manageable with friends and family than expected.  

August 2011. Spanish Doctors Week One.

Flew from Tokyo to Mallorca, Spain, a bit of a cold, diving and swimming with

the kids, nothing special.   Flu like symptoms then painful left ear ache.  Local doctor prescribed antibiotic ear drops and pain killers. Hearing started to deteriorate on that ear.  Other ear inflamed so started with drops on this side too.  Next day severe vertigo, throwing up and no balance.  Accident and Emergency.  Intravenous antibiotics, anti-nausea drugs.  Released that afternoon, still very wobbly.   Prescribed more oral and antibiotic ear drops.  Over 2-3 days lost hearing on both sides.

Feelings

Pretty upbeat. It's just bad ear infections on holiday.

About me

43 years old.  Fantastic wife and two girls aged 8 and 6.  Live and work in Tokyo, Japan.  1 month ago, on holiday in Spain, infections left me profoundly deaf in both ears.  A sudden journey of emotion and information.  Hopefully this is helpful to others and may lead to some good advice in return.   Tons of Love to my wife Ulrica, who now basically has another child on her hands.   Thankfully the real kids are un-phased and life goes on.    Hopefully through the toughest times soon.