Messages from a forum
29 October 2009
- I have an interview at Derriford Hospital on 11 November for preliminary tests. I have no expectations at all, I think it’s about 50/50 whether I will be found suitable.
11 November 2009
- Well I have taken the first faltering steps along the road to what I hope will be better hearing. I had the interview at Derriford Hosp. I had a hearing test which predictably looked like a ski slope. She managed to find a few extra sounds way down at the 120 mark. I should think they must have heard that in Reception!So I had an interview with an Indian doctor. I mention this only to record that he had the customary accent! I had to ask him to repeat several times because accents are the bane of my life!
- The next step is I go to Bristol for a bash on their big scary MRI machine.
This might be before Xmas if I am lucky.
12 November 2009
- The cause of my hearing loss is unknown. There may even be multiple causes because I have had antibiotics, bangs on the head and various diseases. Nobody has ever worked out what happened to my hearing.
It is not clear at this stage if I will be suitable. If the cochlea itself is unserviceable or there is some other cause then I am snookered.
4 December 2009
- Just to say that I have had a letter from Bristol Southmead Hospital. I have been accepted onto the scheme under Mr Philip J Robinson (followed by most of the alphabet) and I will soon get an appointment to attend for assessment for a CI.
- “We’re off!” as my dad would have said. I am meeting CI people all over the place, suddenly! The first I heard of it was when a cousin sent me a leaflet produced by a London hospital giving all the facts about CI’s. What put me right off was the thought of going back to wires and boxes. Those of you who had them will know what I mean. That was a long time ago, must have been the early Nineties and I didn’t have the faintest idea how to go about it.
Later that day the post arrives…
- More news!
- A large white envelope turned up today. I must say it is packed with
information. My appointment is at Southmeads Hospital on the 28 Jan 2010 so I
didn’t quite make the cut for Xmas. Anyway it’s a thrill to look forward to.
There are not all that many!
- I have to fill in a questionnaire, four pages of searching questions (Do you have depression? … not right now thank goodness!)
- There is a detailed map and instructions how to get there and what to do. The traditional warning about lack of car park facilities and public transport (looks good). Also a leaflet about CI’s from some club called the RNID. Is it any good?
- So… my first tentative steps to becoming a fully fledged Cyborg.
- And so, for quite a while nothing happened. I was wondering what the outcome might be but it was all in the future.
- We had Christmas…
- We had snow
- And then ….
29 January 2010
- Right I have been to Southmead and had The Test shortly followed by The Talk.I went by train as planned. I was unimpressed when the ticket machine refused to recognise my bank card so that I could collect the tickets. Luckily I did this the day before so I was able to laugh through gritted teeth and wait for the ticket office to open. Never trust electronics!
- The train was impressive, I haven’t been on a Crosscountry train to Bristol before and it’s quite a ride, In fact the coffee doesn’t even wobble let alone spill and there are absolutely no sudden bumps or jerks. There are all sorts of funny little out of the way holes and corners beside a railway line and it’s like watching a movie. Would you believe a field full of emu? Near Taunton. Anyway I went to Temple Meads because I wanted to do some shopping and because my legs are not as supple as they were I got into a taxi afterwards and said “Driver…”.
- It costs £14.50 from Broadmead to Southmeads if anyone needs to know, it’s a 20 minute drive .I returned to Temple Meads after the appointment, had a little chat with the receptionist who told me that a no. 76 bus serves the hospital from the City centre. Takes about half an hour, cost £2.70.Or nothing with your bus pass.Also Parkway is the nearest railway station and as it happens it is on the same ticket. I actually booked to TM but the ticket machine issued it to Parkway anyway! There’s a 15 minutes difference in the departure time.Coming back was a nice fast trip.Unfortunately the electronic displays were out of order in the carriage I was on. So I had to watch carefully for the station.
25 February 2010
- More news about my progress through the CI programme.
- I have had two letters, one for a CT scan and another for an MRI scan. Obviously one is to see if I have a brain and the other is to see if it works.
- This will take place on March 31 which means it might be a bit warmer! I think this time I will probably go to Parkway direct and then if there is time after I will dine in the city before getting a train home. Or if I am late I can get a hot oggy from the stall on the station.
- I am asked to phone the hospital and leave a message on their answerphone confirming my attendance. Presumably if I don’t that means I slide back to the foot of the ladder. There is no email or textphone number. Helpful! I have to give my reference number and other personals and leave it after the bleep. How does a person with no usable hearing achieve that, pray? The reason I am going for the <mumble> tests in the first <mumble> place is to give me better hearing so that I can manage things like tricky phone calls.
Sometimes I feel like a raft of common sense adrift in a sea of bureaucratic insanity.
17 March 2010
- I have had The Letter.
My surgeon is Mr Philip J. Robinson. Bless his little cotton socks.
8 June 2010
- I was able to rearrange some appointments so as to be on the same day.
- On a baking hot day I went to Southmead for a whole day of tests. Starting with an MRI scan, then a CT scan, then a very boring test for balance involving blacked out goggles and a dot on a screen.
- Phew! I was so glad to get home and cool down.
17 June 2010
- I am due to go to Southmead Hossy at Bristol tomorrow for my crunch meeting with the CI team. I’m catching the 6.23am and connecting at Plymouth at 7.25 with the train for Big B.As I have heard nothing negative at all from any of the staff doing the tests I assume that I will be accepted, at least, I’m optimistic. Naturally I shall be <mumble> if turned down but I think from remarks made by various people it seems unlikely.
- When I last went to Southmead it was absolutely baking hot and the roads outside were in chaos thanks to the building operations taking place there.It’s a rolling upgrade of the buildings and whole blocks are coming down all over the place. Took me 20 minutes to find the restaurant by which time there was barely time for a cup of tea. So if you are going to Southmead at any point, be warned!
26 June 2010
- Well I did the trip, met the crew. I have now had a letter to say that I will be admitted on 15/09/2010 for The Op.Almost a year to the time from when I first went to see my GP and said “Can I have a CI, please?” the answer has suddenly turned out to be “Yes!”.
- g gulp… it’s going to happen.
2 July 2010
- I just had two letters from Bristol Hospital.The first one : “Dear sir, we regret that due to reasons beyond our control we have to cancel your operation”. Ooooh nooo! In a thoroughly bad temper I opened the second one “Dear sir please note that your operation is now on the 22 Sept”.
- Equilibrium restored. Nobody told me you need nerves of steel to survive this lark!
24 July 2010
- More news… I have had letters about my vaccination for meningitis. Must say I’m dragging my heels just a little bit over that. I’ve had unfortunate experiences with vaccinations in the past!
- Also I have to organise an MRSA test which is a nasal swab apparently.Something else to look forward to. At least at this stage there are no proposals to stick anything up anywhere else… I have also had a copy of the surgeon’s report to Derriford Hospital in which he confirms what he has found out and what he is going to do. Presumably they now send them the bill.
- The report contains the somewhat intriguing line ” The CT scan was normal but, interestingly, on the MRI scan of the cochlea’s there was an area of loss of signal in the lateral semicircular canal, similar to that seen in meningitis.”Now what the hell would that be about?I did have a very serious illness when I was a nipper, I spent months in an isolation hospital in Finchley being fed antibiotics by the shedload. For weeks after being discharged I was taking oral penicillin.Would that do it? Or did I actually have meningitis??
25 August 2010
- I have now made all the arrangements regarding my op. It will be done on 22 Sept at Southmead in Bristol. They asked for a MRSA swab, they are being particularly careful about that and I am pleased! I did that yesterday at the local doctors and they will check the results before I go. Hopefully I haven’t got anything ‘orrible.
- I have had a letter from Truro Hospital with an offer of a place in a support group. Also I have joined the Cochlear Industries forum on the Internet, had a good read. Lots of information there.
15 September 2010
- Right. I have seven days to go and the final arrangements are in place. My daughter is going to ring the hospital and establish bona fides so as to keep in touch with what is happening.
- Southmead said that because I have a long way to go to get home they want to be quite sure that I am up to it. That means that I have to keep things a bit flexible so daughter and partner will handle that end for me.
- I’m not having butterflies. They are bluddy great vampire bats.
20 September 2010
- I just want to get on with it. The actual operation is on Thursday, I assume they want me there overnight because I will be done early rather than later. So I have a boring evening in hossie to look forward to. Can’t even sneak off to the pub. I hope they have TV. My trip to Bristol will involve a visit to Waterstone’s I think!
- I am going on the 9.11 from Liskeard so as to have time for a shopping trip and a spot of lunch before reporting for duty at 3pm. I thought it was better to do that and allow time for anything that might go wrong.I forgot to mention that on my last Bristol trip the Up train was held for 20 mins at Penzance while someone was found to chase cows off the line. The result of this was I missed the connection at Plymouth and instead had to hang around at Exeter for 45 mins to get another connection. The stress factor was much higher than I would have liked!
Later that day the post arrives…
- Disaster! It’s been cancelled.
The operating theatre is needed for someone much worse off than me.
23 September 2010
- There has been a slight hitch in communications (fancy that!) and in fact my revised op is on Tuesday and I travel up on Monday.
ooer! Not so long to wait.
I just wanna get ON with it!
25 September 2010
- Things are once more advancing on the operation front … I do hope that they won’t cancel again! With the NHS comes uncertainty.My daughter rang the ward to confirm that I am still coming and she was able to contact a representative for the TV/broadband system. When she pointed out that I can’t make phone calls the rep arranged to be on the ward at about 4pm to fix me up as I am supposed to be there by 3pm. So all I have to do is get packed and go. With any luck I will be able to keep in touch with everyone by email.
29 September 2010
… after the op…
- Hi folks, I am back! Thanks to all for your kind wishes. There were times when they carried me through.
- Well it was very stressful with all the cancellations, I don’t get worked up easily but it got to me a bit. I would say to anyone considering this, do allow for the fact that you might run into problems. It adds to the pressure.
- Then there was a problem with the train going to Bristol because it was delayed 50 minutes. We had to make contact with the hospital and keep them informed but they were fine about it. We set up the communications with Bristol ENT dept in advance, they were very helpful about that. Also I took my mobile.
- Finally I got there and Internet connection was not very good but it worked. Having arrived at the point of no return all the tension left me, at last we were getting on with it! They are a mixture of good and bad communicators, surprisingly some medics were not too well versed in speaking to Deaf people. It’s odd really that they should be dealing with Deaf people and yet they don’t know how to effectively communicate. You would think for the money and prestige they get they could spend an hour doing an awareness module. It’s not exactly rocket science is it?
- Apart from that things went smoothly and I couldn’t wait to get blacked out in the ante room. The next thing I remember was waking up at about 2pm and feeling a bit rough. This passed quickly and actually my head felt as if it had collided with a solid object. Very bruised. I’ve done it before anyway and that’s how it felt.Painkillers were freely offered and took much of the pain away so the main problem then was my body clock was seriously out of bonk. Having been asleep all morning I didn’t sleep at all last night!
- So I have a nice row of staples behind my shell-like lughole which I have to keep clean for a week. I’ve been advised to take care with the arms of my reading specs, they can carry infection. The pain is quite dull now, I am keeping going with Paracetamol and Ibuprofen. The hossy have also given me some Codeine which the nurse has advised me not to use unless it’s unbearable. This is because it causes wooziness which might add to my balance adjustment problem. I’m subject to unexpected lurches as my balance slips a bit, I’m forbidden to drive until this stops.
- I was up and about within a few hours of waking,
I did feel a bit off colour for a while but I have had worse hangovers. It’s endurable. The worst part was the place was too hot! I kept sipping iced water all night to keep hydrated and I think it helped to clear the chemicals from my system.My daughter came up in the car to collect me and we made it home in good time, so here I am having a drinkable cup of tea for a change.One thing … I’m full of holes. When they did they blood test the girl wasn’t very good at it. Having failed a couple of times on my right arm she transferred her affections to the left so I’m looking like a bluddy junky in that region! I can’t believe people do that for fun!I have a bruised area on the side of my neck, I don’t know what caused that, maybe the drill. I have a full information pack about the operation the apparatus, specifications and even a set of instructions for the surgeon. One hopes he had memorised them carefully beforehand.I had an inspection by the surgeon and team this morning followed by an X ray but the results had not come up when I left.So that’s about it really. I have to travel up in a month to get switched on.The local doctors will be doing the aftercare, I have already arranged for that. The hospital have even supplied a sterile tool for removing the staples just in case the GP’s haven’t got one in stock.PS while editing this I got sudden strong waves of tinnitus. The factory siren / screechy one. Oh well.
- It’s getting better all the time now. The worst bit was just after the operation but it’s only a few hours of discomfort after all. It’s not agonising, more irritating.
I have to watch the lurching though. If I change direction too quickly my balance takes a moment to catch up. I don’t want to fall and split the stitches or worse. I have my son with me today, he just wants to be sure I’m not going to keel over!
1 October 2010
- Logging in today feeling a lot better.I think I am ridding myself of all the drugs now except the painkillers. My aches and pains have subsided and all I have really is a slight itch from the clips and a slightly bruised feeling where the implant bump is.
- My body clock is still catching up but I have decided to just nap when I feel like it whatever time that may be! Eventually it will sort itself out. I have made an appointment to have the clips examined and possibly removed next Tuesday. I haven’t had clips before what’s it like getting them out? I usually just get stitches which don’t hurt. Still lurching a bit so I am staying indoors and being sensible. There is as R. said a certain wooziness and feeling of slight unreality but it is not unpleasant, just needs watching.
4 October 2010
- Logging in from Darkest Cornwall ..
- Nearly all pain has gone now and I have been able to handle the implant site without pain. Things are looking up. I still have a bit of a balance deficit just every now and again.
- Someone described the feeling “as if you have just stepped off a ship” and that’s about right! I cautiously took the car up the road and round the block, all seems to be well there and no unexpected surprises !Is it OK to cough and sneeze? I did an almighty sneeze the other day and it made my implanted ear pop. I don’t want to have to peel the implant off the wall.I have to get my staples out tomorrow at the GP’s. They are very good down there, when she took my bloods she hit the vein first go and I literally didn’t feel a thing
5 September 2010
- I have now had the staples out, it wasn’t too unpleasant, just stung a little bit but I am more comfortable now. So that’s it from the surgery side, all I have to do is recover. I am tapering off the painkillers and there’s no increase in pain so I might just discontinue them. They make no difference, why bother?
There’s a tiny bit of tinnitus, a sort of gloopy bubbling noise so I suppose that at least proves that something is making contact. It’s not annoying so I hardly notice it.
16 October 2010
- Quick update: I am being switched on on Thursday @ 1.30 at Southmead.
- I am travelling by train as usual, I can’t be bothered to drive, given the traffic/parking situation.
- Most of the discomfort from my op has gone. I have had some disturbed nights because I can’t sleep on that side, the pressure becomes painful after a while and wakes me up. Also the odd headache from time to time. There is still a painful spot in the impact crater area that does not like pressure. I hope this will improve before the fitting otherwise the new aid might rub on it. There is still a swelling above my ear and the wound is still itchy. Apart from that all is well. It’s been quite tough with only one ear working, if too many people are speaking it just blots itself out.Roll on Thursday and let’s hope for a smooth trip!
21 October 2010 Switch on day!
- Well, having been successfully Borged today I am getting used to all the strange new sounds.The castors on my chair squeak. The keyboard making a terrible racket. I can hear my son talking in the next room but not what he is saying. On the train back I was hearing all sorts of strange noises including a strange squeaking that I haven’t figured out yet!
22 October 2010
- My first 24 hours… massive information overload.
- My hearing is so acute that I can hear noises I didn’t expect. Paper rustling, the crackling of silver paper. The loo sounds like The Flood going over Niagara. The car is fine and I noticed that the supermarket is less of an ordeal than usual. The CI certainly copes well with noisy environments. However everyone still sounds like Donald Duck on helium. I didn’t mention, they gave me an absolutely huge kit of spares and accessories. From battery chargers to spare ear hooks there is a suitcase full of bits!
17 November 2010
- I’m supposed to be in Bristol getting my CI adjusted but everything has been cancelled due to the floods at Lostwithiel.
- I can hear quite well now, certainly most noises, birds, doors opening and closing and sundry sounds like that. Speech is still coming slowly. Words now sound different because I am getting the full monte instead of a gabble. It takes time to learn to decipher that.
- Music : very encouraging. I have been listening to You Tube so that I can be selective about what I listen to. If I listen to music I know already from my mis-spent youth then it helps me to get back into hearing sounds. So I am working my way through 60’s bands on You Tube. I can hear the hi hats click. I can hear the guitars and the band working together. Not in full detail but I am getting there.I can tell the difference in sound between different drums and cymbals. Not all the time but quite often. There’s a new dimension to music that wasn’t there before. There is more to come.
- On the other hand my sound settings are not quite right, the high pitches are too harsh and piercing, it’s uncomfortable and out of proportion so I need to get that adjusted. Other than that I think I am adjusting quite well. Not bad!But … it’s quite tiring. I can’t listen all the time, my concentration goes.
Over the years I have got into the habit of not expecting to understand what I hear. So now I have to concentrate to overcome that. It will take a while I think to learn to listen rather than hear a lot of meaningless gabble.Met my ex wife this morning, she’s most impressed, she knows how I have struggled.
21 November 2010
- Someone on the forum was thinking of taking the plunge.
My thoughts :
- My reason for having it done : My hearing is rapidly approaching zero and life was becoming tougher and tougher.
- The initial test will be the familiar hearing test and there might be a few questions about how you cope with being deaf. They want to establish clearly that a CI will be of use to you.
- The main idea that you need to get over is that hearing aids no longer cut it for you. If you have a ski-slope audiogram that speaks for itself. Psychologically they want to be sure you can withstand the rigours of the operation and the therapy afterwards. They want to see a commitment to a long course of therapy.I said to them that I was going into it with no expectations and that if I ended up with nothing I accepted the risk. I pointed out that the worst case scenario might be that they kill me. That made ’em laugh!
- So long as you have thought it through and show commitment I think that’s all they are looking for. The rest of the physical tests are for the surgeon to decide if there is anything that they need to take into account.I had seven separate sets of tests before The Interview.
More thoughts …
- Your audiologist will explain the choices in detail.
- You will get to see and handle the actual models that they do. There isn’t a great deal of choice because there are only three companies manufacturing the devices at the moment. All of them are researching furiously with new advances coming along all the time.
- What I did was read up in advance what each company had to offer and so I had a notion of what to ask for. Originally I felt that the Advanced Bionics one would suit me best as it has a lot of electrodes. More electrodes means more channels and more channels means better frequency response and control. If you don’t understand this then ask for it to be explained. But then the audiologist drew my attention to the fact the Cochlear Corporation had brought out a more advanced implant that would suit me better because I like music. So straight away I said I would go for that.
- The implant is a Nucleus C1512 with Contour Advance electrode. Contour Advance just means that the end of the electrode is curly so that it will thread round the spirals of the cochlea. The more centrally it sits, the better the frequency response and that’s what has happened, I’m hearing pretty well with more to look forward to.
- The third company is called Med-El and at the moment they are the least interesting of the companies but that doesn’t mean that they will not bring out some advance that puts them ahead of the others. In a way it’s a bit of a race between them, which is healthy because we get the best available choice.So be guided there by the experts but also there’s plenty to read.
23 December 2010
- I did a long and cold trip to Bristol through the heart of the snow and ice…
- The good news!
I don’t have to go back till next April. I have apparently made exceptional progress with word recognition and I scored 98% in the word recognition with lipreading test. Even in the very hard one with no visual clues I got 44% as opposed to 0 last time.
It’s working! Eureka and all that!
31 January 2011
- Describing to other members of a forum how well I can hear now, 2 months after switch-on.
- A CI is another method of improving poor hearing. Not a cure for hearing loss but a method of getting better hearing than be achieved with conventional hearing aids.I can hear all sorts of things I never knew existed, like my own breathing, my
feet scuffling on the floor and my car has a VERY irritating squeaky fanbelt which I will be fixing pronto.
- On the other hand I am still getting used to music. Can’t make sense of Glenn Miller but I can follow Mr Hendrix through his slow blues numbers including the waa-waa. I can for the first time hear cymbals but the bass drum is not very clear. I can sometimes understand the lyrics, especially if it is a song I know. I’m not at the stage where I can recognise random tunes at will.
- Speech is becoming clearer, I now longer misunderstand people so much. I had a long conversation with my FIL at the children’s birthday party, surrounded by screaming, shouting kids and Son in Law vacuuming. No problem with the CI at all. This is a killer environment for hearing aid users.
I still can’t understand the radio too well, just a word or phrase now and again and it becomes tiring to listen to speech although I am becoming familiar with the music. The sound quality sounds distinctly different to the sound on You Tube. My car radio is very clear and I can pick out more words. The engine noise doesn’t help though.
- Other weird things… taps trickling make a tinkly noise, the loo flushing is almost uncomfortable. I can hear cars and birds outside but only very faintly.
By Andrew Arthur.