MY ADVICE - A HELPING HAND

When I had a stiff neck I was comfortable. Perhaps, like a stiff back or joint, its nature's way of preventing distress. As the movement returned the discomfort increased with it until the movement was free and time had healed it. The same can be applied to my surgery wound. When it was swollen and tense it was numb and it is only now that the tissues are soft that I can feel the deeper bruising. That hurts more than it did at any previous time. If I don't poke it,  it doesn't hurt but it is there and I know it is and I can't see it behind my ear so I go exploring! I must learn to keep my sticky fingers away but I can feel the bump now. The generalised internal bruising (not visible) is now being recycled, leaving my face soft and natural again, as is my scalp.

The natural free movement of my head still brings about an instant, short lived resettlement of my eyes. I don't think of this as dizziness. It's more like learning to adjust to new vari-focal glasses that need specific viewing angles to work best. My tinnitus is now back to its normal low key whistle on both sides. This is easy to ignore with conversation or louder background sounds through my, struggling but working, hearing-aid on the opposite side.

Feeling good, I forgot myself and bent down in the garden which made me light headed and wobbly.

I didn't really want to do that!

So how could I have done it differently?

Well, of course, it went so well that perhaps I could not have done it better, so differently perhaps. On reflection there is always something, so here are my suggestions.

Firstly, do your homework. The advice given out cannot be specific because we are all different, which makes it repetitive and formulative. What we get is statistically likely, the things that people report over the years adding to the database of possibilities. At least that means we are not taken by surprise and their impact is less if we expect it.

What we don't get (without a lot of deep searching) is the unofficial line and that is probably a good thing. Some of the problems can be very nasty to endure and last a long time. I am happy to say they are, nowadays, few and far between so I will not dwell on them here.

This is my take on what I did for what happened to me, when it happened and if it worked. The emphasis will be different for others but there is a common theme with some variables. This may help to prepare those who are unsure of what to expect and want to be prepared, realistically, for what may happen. Those most likely things rather than the obscure.

In no particular order:

Medication.

Take the pain relief offered at night even if you feel none or just minor discomfort at the time. Few people are at their best in the early hours and even small levels of discomfort can prevent sleep and leave a disturbed night. What you might ignore at three in the afternoon can feel much worse at three in the morning.

Dry mouth.

Combined with a sore throat this is common, often made worst by oxygen masks. It can be a big problem if it stops you swallowing and you may choke on food that won't go down. Choose fruit or wet foods rather than bread, potatoes (mash or chips) etc. and use plenty of sauce or gravy with the vegetables. Fruit juice is nice but it leaves your mouth with an unpleasant coating that needs water to wash it away. Perhaps water is best from the start.

Yogurt with fruit for breakfast not cornflakes or porridge unless you have lots of milk with it. Mine lasted so long that I used Saliveze artificial saliva to help out for a while. Talking adds to the dryness too, so;

Communication.

Use a note-book to be sure of instructions and information given to you. Ask for questions to be written down because it saves headaches when trying so hard to concentrate without hearing properly. It gives a record to show others if there is doubt later about mis-hearing.

Glasses and hearing-aids.

Peeper Keepers

foam tubes

I used fabric pull tight holders to enable my glasses to fit over the large bandage and one ear. The adjuster needed to be to one side to rest my head back comfortably. For later a cushioned tube helped cover the arm near the wound.

Bear in mind that if you have a hearing-aid to use (on the other side) swelling of the head may make the molds temporarily sore. You may prefer to be completely deaf for a couple of days and that notebook will be well used.

gripper socks

Soft gripper socks.

These were given to me but you may want to supply your own. They add confidence to uncertain steps and are safe on hard polished, and sometimes wet, hospital floors. If you prefer your own slippers be sure they have good gripping soles and bear in mind that bending down to put them on can make you dizzy.

Exercise.

Walk about, even though the excuse to be in a comfortable bed most of the day is wonderful. Nurses cannot always come with you or follow you at busy times like morning admissions and ward rounds. 

Ask before doing and again if in any doubt before setting off.

Until proven safe, be sure to let them know where you are going. Get out of bed slowly and sit on the edge. Plant your feet firmly and get up, test the feeling and if all is well walk slowly and be vigilant so that people and things don't bump into you. Take your time, have a stretch but don't bend down, bend at the knees instead.

Travelling home.

You may be carefully attended to but on the way home you can meet problems you were not expecting. Exhaustion, fatigue or lack of stamina makes carrying or pulling your bags on the way out much harder than on the way in.

You can't do it alone, make sure plans are made well in advance to avoid last minute problems and if you live a long way away from the hospital, consider a hotel for the first night out so that the minimum journey is necessary. A taxi ride may be best. If, during the night, there are problems or in the morning there are questions you forgot to ask, you can easily go back to the hospital and deal with it while you are still close.

I hope this goes a little way towards making this momentous step forward as uneventful as possible. No one wants to be an expert surgical patient by getting too much experience in hospitals so let it be someone else's experience.

IS IT NEARLY A WEEK ALREADY?

I am pleasantly surprised at the speed of the resolution to my, more unpleasant, symptoms. Those uncomfortable parts have been more than manageable and haven't lasted for long. Each element has had an explanation and was to be expected in some form. 

Today is the last of my DVT prevention injections, I have had a DVT in the past so for me this was a standard precaution. Not everyone will have the same routine, it's "Once bitten, twice shy". My tummy is more bruised from the anti-coagulant than my head is from major surgery. I confess to having poked my head with a tentative finger to see how it feels. The skin is slightly numb on the surface around the wound and swollen underneath but not red or inflamed to suggest trouble.

My neck is now free and head movements mobile, even my jaw is cooperating with me. This is good to do but the increase in automatic head turning to take notice of things is causing frequent delays in my eyes settling and focusing. This brings tension to my face and forehead, a feeling of nausea follows if I don't wait for my head to catch up with me. My hearing-aid mold now fits well and I can hear better with my other ear than I have for ages! But then, the house is quiet now and there is only my wife to listen too. By being in this familiar place I can pace myself without getting too tired. There is no dizziness to concern me.

The taste in my mouth is subsiding and that is a relief, my tongue is less 'in the way' which I think was just because it has uneven sensitivity and I notice it more easily. My toothache is persistent but mild and eased by the paracetamol which I am still taking regularly. I could do without it but because I cannot read for long with these tense eyes there is very little to distract me. It takes away the annoyance of it and makes me feel more content.

Yesterday I was on my own all day for the first time. I have shown I have no problems and feel safe with that. I can catch up with my search for other people's experiences and feelings on the computer. I have found a whole world of others out there with similar thoughts and difficulties to my own. I just have to be careful with eye strain and sideways glances.

I have reread the information leaflets I was given before the operation and some others acquired since and compare them with my reality. This is where the uniqueness shows. Everyone will have their own variations and experiences and it is impossible to predict which will be evident, which will be troublesome and how long they will last. 

So this is just my personal insight and I am very pleased with the progress so far. 

What to expect following CI surgery.  

Pain: 

The operation wound is remarkably comfortable. Perhaps a bit tense at times and it may prickle but nothing that could not be ignored. The real issue was with the referred pain of the facial nerve giving me 'toothache'. Two days intensely and then only if stimulated by jaw movement. Now easily contained by paracetamol.

Swelling: 
This is very local to the wound and is expected in all surgery to some degree. The skull bone is close to the surface so there is not much room for the tissues to expand as it would in other parts of the body.

Ear numbness:
As above this is expected in surgery but there may be some permanent skin surface insensitivity. I will have to wait and see. For me this could be a problem because I wear glasses and they fit in this area and I will not be aware of any skin damage they may cause if I cannot feel it in progress.

Ear popping or fullness:
This happens when I stand up quickly but was only really evident in those first couple of days. Now it is more likely if I have been sleeping on that side, which I try not to do.

Dizziness:
I am very pleased this has not been a problem for me. I was expecting this from the first time I got out of bed and took the appropriate slow precautions for it. Eye disturbance is what I feel now. A slowness to focus sometimes but I feel safe on my feet. A good reason not to be left alone in those early days.

Drainage or discharge:
Since the large pressure bandage was removed the wound has been exposed to the air. A small leak of slightly stained serous fluid (not blood) has been evident. This is normal and is more evident because gravity helps it run down hill. There is no redness, soreness or smell associated with it. The wound is now at day five and completely dry.

Dry mouth:
This is something that was much worse than I was expecting. It is not unusual to have a dry mouth after surgery, it may be from the after effects of the anaesthetic and the effect of wearing an oxygen mask, as is the lump in the throat sensation. It lasted for more than twenty four hours which told me it was associated with the facial nerve (which passes through the salivary gland). There is potential for this to last several months. I found the solution in 'Saliveze' an artificial saliva mouth spray, until it returned to normal after about two days. I had to eat only wet food to avoid choking because I could not swallow on that first day and night.


Taste disturbance:
This was longer lasting and very unpleasant. The metallic taste of my saliva when it returned was like drain cleaner! It has almost gone now after five days but still lingers with an aftertaste. It is also associated with an alteration in my tongue sensitivity, it feels as if I have bitten it and parts are swollen and others are numb. This is facial nerve again.

Meningitis:
I had a specific vaccination against this before the surgery as a precaution. If I had got this infection it would be devastating. The surgery is very close to my brain stem and infections track down the length of the 'foriegn body' of the implant. I'm glad that is not even in my thoughts until just now!

Tinnitus:
I was expecting this, it would be normal, as many things increase or alter the intensity for me. What I did not expect was the wonderful musical version I had that was not unpleasant at all. Sometimes the record needle sticks and it repeats itself continuously but mostly it is like a gentle ensemble playing background music at a reception. Today the ringing has returned, low key, but disappointing.

Chewing discomfort:

The localised bruising around my jaw made it difficult to open my mouth to chew at first. This has now gone away completely. When it was tense the effects were also felt in my eye coordination. The aggravation within the swelling of my jaw caused some of the other effects above to start up again or become worse if I persisted in moving it too much.

I was prepared to suffer for the long term gain.

I was not afraid of surgery.

I could have endured more.

I am very pleased that early discomfort and annoyance has quickly turned into satisfaction. I would happily do it again!

POST OP. DAY 3: THE REALITY SETS IN

I have heard anecdotal tales of days like this.

I have had very little sleep this past few days but have been wide awake and attentive. Perhaps it's the extra oxygen I have been given?

I have had no extra drugs beyond paracetamol and my usual blood-pressure pills.

The anaesthetic was all about sleep!

Perhaps it was just euphoria carrying me along? It was good whatever it was.

Morning day three.

I have been woken for my DVT prevention injection at 7am and I feel so tired still after seven hours of sleep. I have no pain but the record playing in my head has a stuck needle and it just repeats itself constantly over and over again! I can't get the mold into my other ear, it is too tight. So I decide to leave it out today so that I do not get pressure sores to make life difficult later when I might be more desperate for it. I have a minor vague tooth ache in an upper tooth which I cannot identify, it has no relationship with my mouth. It must be the facial nerve again. 

I have taken another hour in bed but feel I must get up for a visitor coming for breakfast and to help in my garden. I must avoid bending, lifting and carrying heavy things for a while. The first thing I notice is that I am quickly into my routine in my own familiar kitchen but I get a rude awakening when I realise I have no sounds coming in and no awareness of anything or anyone around me. I have dropped a knife on the floor and I stand on it, then I notice it's there! I turn from the cooker with a hot pan and right at my elbow is my son but I didn't know he was even in the room. He was last seen working in the garden a few minutes ago. I am being myself but not in my usual state of profound deafness where I can ignore things I hear vaguely or ask for repeats of things I didn't quite catch. This is total deafness on all sides. 

I now have good movement in my neck and I am spontaneously using it with only minor discomfort. I have had my pain relief anyway, it seems to keep things low key and removes distraction. With the increased head movement I find my eyes are struggling a bit to keep up with me. I found myself at the top of the stairs feeling lightheaded and flushed holding on to the banister rail. Talking is uncomfortable if I do it for too long and I still cannot open my mouth fully, it objects at the joint when It's being stretched open to take a normal sized bite. Talking also dries up my saliva still which is otherwise flowing well now. It just tastes awful, it's metallic and it feels as if my mouth has been rinsed in cleaning fluid! That stuff we don't notice as it comes and goes through the day is very off-putting when you are constantly aware of it. It feels as if it is dripping into my mouth all the time rather than just being secreted gently and swallowed automatically. 

 

This is all to do with the side effects of the facial nerve interference from swelling etc. and the movement of my jaw through the outside bruising and tension in the tissues when I speak and eat. During the operation the nerve is located and protected from direct damage. Anatomically it is only a centimetre away from the surgery. A facial nerve palsy is a very unpleasant permanent disability to have.

On the subject of speaking. I am getting all my communications written down for me with help from lip reading. I thought I was good but this total dependence on it shows how hard it is to cope with the necessary concentration levels. It gives me head aches and eye strain even in these small doses. I sympathise with those who live with this all their lives. Another odd thing is that because I cannot hear my own voice I have responded to the written messages by writing my replies. But I can speak! why do I feel the need to do this?

No wonder deaf children need speech therapy and now I understand why Alexander Graham Bell and his father were so busy with teaching elocution. 

It was a good breakfast. Exhausting to eat it but at least I could now. The provocation of so much jaw work has made me uncomfortable again with a dull anonymous tooth ache and increased tinnitus. I feel tired and fall asleep. When I wake my son has gone, he didn't want to wake me on his way home. Because I never saw him go I had no idea he was not still in the garden. Only half a day and I am beginning to feel the strain of my dislocation from the world. I relate to Prof. Ramsdell and his psychological work with otherwise healthy young men suddenly deafened in WW2. That expression they used was "the world seems dead!"  and I can see exactly what they meant and how it must have affected them with such sudden changes. From a sense of mental hyper-awareness to avoid being killed and then an explosion that takes away all ability to be aware of what is coming up behind you. Thinking that at any moment someone is going to shoot you and you can't hear them coming! No wonder they needed psychiatric help and thank goodness he recognised it.

Then something very strange happened to me.

Another short nap during the afternoon seems to have helped me get back on track.
I sat down to write my blog and looked through my notes and the memories flowed through them. I was overcome with waves of emotion with tears flowing down my face!
I couldn't help it, something just welled up inside me and it burst out. 

You will get nothing more out of me today.

Just a thought or an image sets me off ........

(typed the next day with less spelling mistakes)

A PROPER DAY AND HOME AGAIN

It's 5.30 am and I'm up and looking for something to do. My usual left ear whistling tinnitus has suddenly stopped and is replaced by a booming rhythmical beat from an ensemble of keyboard and stringed instruments. I thought I might be picking up London's Capital FM radio station directly into my head.

At 6am it changes to a church pipe-organ tune but I'm not seeing angels. That is, until one appears with another cup of tea!

This tinnitus is weird. 

I search my brain for words to describe it while it is fresh in my mind and I can sit and just listen to it undoubtedly coming from the region of my left ear. The right one continues with its normal low level whistle. It is easily ignored when other sounds come in so I don't find it disturbing and hardly notice it most days unless it tries to compete with loud noises that surround me.  This new one is very different. That is a positive but not precise position. I stays there and is always there but I know I can't really physically hear anything with this ear, not now or ever by normal means again. But this is so real! Relatively loud and positive, better than anything I have heard with this ear in a long time.

Firstly, where is it coming from? My brain says left side and a little forward. The tune is jolly and purposeful with a quick tempo. The notes are mainly low and booming but blended into each other as they play a distinct harmonic melody. I can almost identify what it is but not quite. It is like listening to a conversation in another room through the wall so you know it is someone speaking but not clear enough to understand what they are saying. It's a jamming session with acoustic guitar picking then strumming interrupted with a blended keyboard going through its lower notes. Jaunty and variable without playing the same sequence twice. It is constant, same volume, same speed with interchanging instruments seamlessly joining in at random without breaking the rhythm. 
It's called Musical Ear Syndrome.

A new hospital day starts.

I may have been spoilt overnight by my carers who had time for me but now it is into the 'patient slow' hospital rush morning routine when you realise this is someone else's operation day. The priorities change as a dozen new arrivals are put on the board for today's operating sessions and they all need seeing to first. There are still a few things to do before I can finally go home and I am not the only one in the queue. 

It may have been twenty four hours since I was coming through that door but I was in no hurry to go out again. I had had an eventful but comfortable time and any frustrations were now gone as I could see how well I was and none of the potentially serious complications had happened. I had slept only eight hours (two or three of which were under the anaesthetic) in the previous forty eight hours but I was now wide awake.

When my turn came it was to take off the bandage round my head. That comfortable support last night was now getting hot and itchy so the cool breeze past my exposed ear was so good. My neck was locally tender below the operation site but no bruises were showing. It was stiff when turned to the left (it had been only to the right on the pillow) and there was a minor tooth ache over the third upper molar nearest to the operation. Resisting the stiffness was uncomfortable. I was now moving more and it showed me it didn't like it. The incision was right on the area my glasses fitted. The swelling was minor but in the way so it will need a cushion for a while. The movement and head freedom stirred up my tinnitus again and a harp joined in with drums tapping in short bursts. 

I needed an x-ray to confirm the position of my new electricals and then in my eagerness to depart I must not forget to concentrate on the information and advice given for my follow up appointments. So glad I had someone with me to do all that, it can be exhausting to concentrate for long periods when it is so important to fully understand what is wanted. I could get my hearing aid into my other ear now and the world came back to life. Being wheeled down to the xray department was the fastest I had moved since coming in to the hospital. When the wheelchair stopped in the waiting area my head was still travelling along the corridor which was sloping downhill and I seemed to be rolling down it towards the closed doors. It took a couple of minutes for me to slow down and correct my bearings. I was shown my x-ray afterwards at my request, I have seen many thousands before but none were of my head. It looked as if the surgeon had left his mobile phone inside the wound. A good explanation for the ringtone I was hearing!

Home was by hospital car service door to door. After that ride to x-ray I could not imagine how else such a long journey could be made safely and comfortably. I had to take home injections for the DVT prevention, tablets for pain (which I still had none of) and an appointment for next week to come back for a review.

I arrived home without pain, a stiff neck and still with that dry mouth. Small concerns for what had been an incredibly successful trip where the past details no longer matter. It is the future I look to now. 

And the band played on ....!

A post script to this blog.

It has taken two days for the saliva to return fully so that I can eat properly.

I can taste my saliva which is metallic and like drain cleaner.

The tinnitus is still there and jolly but much more low key.

Popping sensations come and go sometimes like tympani drums.

Turning my head too quickly leaves my head spinning but my walking is otherwise safe.

My neck is moving well but my jaw is difficult to open wide.

.....  and I still have no pain from the operation site which is enjoying the sunshine.

A NEW DAWN AND I SAW IT

First night.

An overnight stay was, for me, a necessity after the previous day's timing but I still can't imagine how it could all be done and dusted in one working day and be safe to send someone home early. I think the information emphasis should be reversed and announced as a one night stay with a possibility of going home the same day if all is well. I got knowing winks but they stuck to the script. It wasn't helpful, it was unrealistic and many people travel long distances to attend specialised regional treatment centres. This was not my local General Hospital just down the road. London is not a cheap place to stay in and best to book accommodation in advance. Though the YHA hostel is just across the street.

It was easy to communicate with my wife.

She was being spoken to and getting the messages but I was the patient.

The ward was not in a busy receiving hospital with an emergency responsibility so overnight I was one of just two patients that I knew of. The care was attentive and restful. Mobility was monitored and assisted and bed rest was not imposed. In fact I felt very awake at 3am and watched the moon move slowly over the city, past the red lights of the building site cranes. Below, in the yellow light of the street lamps a fox was searching the rubbish bags in the quiet street below. The window was open and the room was cool. I got up for yet another visit to the toilet, twice in one night! They undid the monitor cables and watched me from a safe distance just to make sure all was well. I felt very good, just a light central headache when I stood up. My tinnitus was now reacting less and there was no wobble. I amused the night nurses by tidying up the many monitoring leads to my bed which had all become tangled. I have done that since first working as a professional, my seniors never allowed tangles of any sort in wires and I still think it looks uncaring if I do it now! 

The dawn came quickly and soon I was in need of a good stretch and some exercise. I had not been in bed long but resting my head to one side all the time reinforced my stiff neck. My mouth was still very dry but the oxygen mask was no longer on. Tea came at 4am as I was up and feeling dry. Real tea in a cup and saucer with a metal spoon! It's the small things that brighten the day along with the early morning sunshine. I had not needed to put my hearing aid in all night because the messages and enquiries were all written down for me deliberately without asking. When I was given paracetamol the nurse clearly mouthed the words to me and I repeated them to show I had understood what was happening. Only then did she hand them over. I noticed my hearing-aid mold didn't fit comfortably in my other ear. My face had swollen on that side by gravity where I was sleeping on it. I didn't need it so left it out to stop my ear getting sore and preventing its use later in the day.

As I only had one ear to rest my glasses on I used a holder attached to the arms and around my large bandage. This kept them securely on my head but the normal lens position of the vari-focals was lop-sided, making visual adjustments by my eyes disorientating until I found the best positional compromise. I just had to be sure not to move my eyes too suddenly because they needed time to adjust. Walking was best done looking ahead not down at my feet for better focusing. I had been given slipper-socks to wear to keep me safe on the hard polished floor. They were very effective and gave me confidence to move around my room.

As this new day was dawning I surveyed the damage. I was pleasantly surprised at how good I was. My neck was still a bit stiff and my mouth dry. I was comfortable until I turned my head to the left but all the rest of me was agreeable. I hooked myself up to the observations machine again (It was so neat and tidy now) writing my notes made my eyes ache and face tense. The tea was very good.

As I sat up to drink my tea I felt a slight prickly sensation precisely on my wound behind my ear, the first time I have been aware of it. My head is squashed inside the tight bandage now that I have been sitting upright for a while. Perhaps my head is swelling. When I lower the head of the bed (not completely flat) it dissipates with my head turned to the side.

My care has been nothing but compassion, dedication and attention from the nurses I have for company tonight. I have been totally deaf since the operation. They have gently got my attention so as not to startle me when dozing or just looking out the window without knowing they have approached me from behind. They have looked straight at me to show it is me they are talking to, stressed and repeated their words which were few and in short sentences for my lip reading. They made sure I understood before moving on. Once they had got to know me and my abilities as well as my disabilities, they wrote important things down for me to be sure of. When it was non-medical and in poor light for lip reading they wrote it down spontaneously and without effort in well practised natural empathy.

I remembered when the surgeon and I talked of doing my 'good ear' (the only one that had any useful hearing) because it might be a safer operation with less likelihood of complications. I was worried then that it would leave me completely deaf for the few weeks until the unit was switched on. I wondered how I would manage with nothing. I have now had to do it anyway for a few hours because I cannot get my hearing aid in comfortably yet on the other side. It is not as bad as I thought it would be but it does show me how much more skill and awareness is needed to function with that level of complete hearing loss. Lip reading alone is not enough, it requires a lot of awareness from everyone you meet to make it work as proper two way communication. Constant alertness is very tiring and mistakes will happen sometimes. Such people, who live their lives like this all the time, have my respect.

It is so easy to not bother and become a hermit!

AT LAST AN OPERATION

The operation as I saw it.

Which wasn't more than about two seconds long it seemed to me.

 

As I walked into the operating theatre with the ward nurse I met my Consultant ENT Surgeon in the corridor. I have had many a chat with Consultant surgeons in corridors in the past, it seemed very natural to stop and speak. I shook his hand and asked him if he had had his lunch. He had and his hand was not shaking either! We wished each other well and I went into the anaesthetic room. A situation that was so frequent and regular for me over many years working in the hospital surgery environment. Only this time, I was the one asked to lay down on the trolley by a very young girl in training. She seemed only just out of school but then perhaps I looked like that once, a long time ago! I took the opportunity to show her how to speak to a deaf patient (I had had my only hearing aid and glasses taken back to the ward). We were alone at the time and she was a learner who had been asked to not leave me on my own. It was rather instinctive on my part, as I had done it so many times before on other subjects for new learners and I was a good example of the potential problems she would meet later in her career.

It is not easy to lip read without your glasses on, nor is the orientation helpful when you are flat on your back and not standing in front of someone as you usually would be to concentrate on their face. When the more senior assistant came in he needed no help in getting his questions answered by someone who couldn't hear. It may not have been BSL but his signs were clear and direct regarding when I had last eaten or had something to drink. His routine questions in a routine situation for him. I had decided in advance that I would be extra vigilant and test the way deaf patients are communicated with in hospital. This is one very nervous time when questions and answers are important. Informed consent means understanding what is happening to you and why. Being the centre of attention means several people acting at once and you may be suddenly grabbed where you weren't expecting it which distracts from what you were trying to concentrate on. Added to this is the situation were even hard of hearing people, who have got used to an increased level of hearing find themselves out of their depth without the hearing aid in place. It is probably best left in until the last moment but it is hard to remove someone else's aid from their ear. It is an orientation thing done by a wearer not a helper for most people. I knew what was going to happen but looked to see if due consideration was given for my lack of hearing. They were not to know that I knew what to expect.

The Consultant Anaesthetist approached me from the front and said who he was. I did not hear it but he was close enough to see that he was speaking directly to me. The details were not important it was the deed that mattered. Without my glasses on my peripheral vision was no use to me and only direct actions close in front of me could be seen. Any questions would be missed all together not just misunderstood, it is easy to just get on with it without asking. It takes time and persistence to get the understanding from someone not used to the words in common medical use. There may not be any simple alternatives to use. Many jobs have their jargon words not in common use in the world outside. After making life easier for the assistants, by raising my legs even before they had asked, when they were placing the leg DVT prevention apparatus on, it was the turn of the junior anaesthetist who had seen me first thing in the morning.

She put the needle into my hand exactly as I was expecting but I wanted to see how it was done to someone who could not hear the explanations. It is so routine to them that it is often done without thinking, even the information "a small scratch coming NOW" will not be heard and take someone by surprise if they didn't expect it because they did not hear the words of warning. With their face looking down at the hand, lip reading it is not possible, if your head is on a pillow the needle comes suddenly and unexpectedly unannounced. The reflex action from being pricked is to pull the hand away so if it is not securely held the needle can tear out of the vein. This is particularly awkward when the remaining choice of veins are even more difficult to find. I lifted my head and said it doesn't work that way for deaf people and she turned her head to look straight at me for the first time and smiled. A second lesson for the day, perhaps the next patient she has will benefit from it.

When you have no hearing at all because your hearing aids are removed there is no environmental sound to guide you. No beeping monitors, no hearing approaching footsteps, discussions go on of which you are not aware and people suddenly coming into your vision unannounced. Take off the glasses and its all a blur as well, with things touching in unexpected places that are nowhere near your surgery site which is were you might reasonably expect it to be and all at different times. No warning came from anyone. It was all gentle and purposeful, positive action but to the nervous patient it was possibly in need of some initial direct explanation before the free for all began. This is a long way away from most peoples daily experiences.

She was all I could see in front of me and then the oxygen mask was held over my face. Not a surprise for me, it was expected, but it came silently and suddenly from above my head when I was concentrating elsewhere. I could not see then, nor hear and  I was not aware of anyone else in the room but there must have been at least four people there somewhere.  It was soft and comfortable with a gentle cool breeze on my face, I was waiting for this moment so that I could remember it and describe it all later.

Off I went into the Land of Nod and as soon as I felt warm and happily on my way I was suddenly being dragged by the hair through the concrete underworld of the utilities section of Gatwick Airport, amidst what looked like concrete blocks in shadows and contrasting corners with light patches. Then I was waking up being transported to my bed in the ward. Or that was my interpretation of how it felt to me! On reflection it must have been the exposed pipework of the hospital corridor ceiling as I passed under it on the way back, as my brain finally reached a state of memory long after the operation had finished. Even then it was still struggling to find a rational explanation for it and put two and two together to make five! It was like an unexplained bad dream and I didn't dare ask what they had given me to cause it.

Do hospital designers think of how ceilings affect patients who have a different view and perception of the architecture than that of the hospital staff?

Recovery.

On returning to the ward my head was bound in a large soft padded bandage. My left ear had been operated on and there was no pain and it felt reassuringly comfortable. I still had no hearing in either ear, of course, so the best approach to communication was with my pen and notebook. My mouth was very dry and no sound came out at first. The drying effect of the oxygen mask only made it worse. It doesn't surprise me that so many semiconscious patients want to rip the mask off their face when they first feel it. My throat had a dry lump in it which I had been warned about in advance and a jug of iced water was brought to get things lubricated again.

It was now 7pm, seven hours since I last had a drink and almost twenty four hours since I last ate. I was given a plate of fish and chips with baked beans. there was no saliva to chew with and I choked on food that just wouldn't go down. The solution was to dip the chips in my tea or put on lots of sauce and include grapes for extra moisture. The fish would have to wait for another day. Who needs cordon bleu hospital food at a time like this?

My neck was stiff and sore at the muscle behind my left ear as I stretched it turning my head to the left. To the right side was fine. After about three hours I got out of bed for the first time and went to the toilet. There was only a very slight wobble and I had no problem adjusting to it with none of the dizziness I was expecting. Being upright again and walking caused me immediate raging tinnitus but no seriously bad effects. It was important to be sure and steady first before setting out on this mission. The desire to go to the toilet is a strong impulse. Once learnt at an early age it becomes distressing when prevented in adulthood. It permeates the drowsy brain and makes you do this familiar thing half awake during the night. Feeling light headed and unsteady is a common problem from anaesthetics and in this case, the surgery as well. The procedure is to take your time. First sit up, then put your feet over the side of the bed, plant the feet flat on the floor. A pause before each part then stand up, check all is well and off I went, very surprised and delighted. I had soluble paracetamol (I couldn't swallow tablets) for a light frontal headache. 

The night time.

By four hours after returning from the operation the pain relief was wearing off, my jaw was mobile but stiff and my top teeth felt as though they had been pulled out. The joint on the left side of my jaw felt like it had been dislocated to give him a better view of my inner ear and then put back into place afterwards. It was not too extreme but there was nothing else to do but feel it and imagine why. The next dose of paracetamol quietened it down and the teeth felt secure again (they never were loose, of course, chewing was perfectly comfortable). It was the referred pain from the facial nerve and bruising from the surgery behind my ear. 

I was now wide awake again but if this had been 4pm instead of 11pm I don't think I would have felt like going home. I think the physical effort of carrying suitcases with stairs and even a short walk to the railway station would have produced severe tinnitus and increased head ache. The effort would have been exhausting and probably catching me half way home in distress. Only a short car ride would have worked.

As it was I went nowhere and enjoyed a comfortable rest overnight with tea brought to me in bed in the morning to ease my still very dry mouth.

WHAT WAS IT LIKE – HOW DID IT FEEL – WOULD I DO IT AGAIN?

We have reached the part this blog is to be about.

Over the next few days and weeks I will tell my story as it is.

• The operation time.
• Hospital recovery.
• Standard advice for the early days.
• Advice gleaned from my experience.
• Settling in and problems along the way.
• The switch on day.
• The changes that follow and improvements that happen.
• How I use it and how it changes me.
• Perhaps some scary stories.

The story is about my unique experience of a Cochlear Implant and no one else’s. Everyone will have a different one to tell and this will be mine. I have worked in the National Health Service for more than forty years in Operating Theatres so I know about hospitals but this is a view from the other side of the sheets.

  

I looked for this kind of personal story for a long time in order to find someone like me that I could relate to and try to foresee how it might affect me. There were too many different experiences to be a perfect match so it is my intention to show my variation of what can happen. This is what the information booklets mention but not in great detail, there are too many ifs and buts to include everything. So this is an opportunity to expand on some of those comments as they were relevant to me. There are no criticisms, just true facts and some situations that were not thought of in advance. Some featured unexpectedly more bizarre than the mass produced general information leaflet suggested they would. I hope to show how good it can be and how much better it could be, with some advanced warning and preparation on the part of the CI patient before admission. The hospital actions will always remain a mystery to the patient who can only sit and wait to be included. Perhaps someone out there will identify with me and get some answers they are searching for.

I will put forward my suggestions for handy things to do that may make life a little easier if you are going to make this journey yourself one day!

I am now the recipient of a new Cochlear Nucleus 6 implant system. Implants are only compatible with the same company’s products for as long as they manufacture them. Thinking well in advance about what suits your own lifestyle is important and any new developments that might be introduced in the future you might want to wait for and connect to at a later date. The competition is very strong and user service is high on the manufactures list of priorities. They know they must be reliable or they won’t get put in consistently year after year. It is important to choose one with a long track record in research, development and usage but as the implants are not all like for like the choices are not easy to make.  The external processor may be changed for something more modern but it can only work with the original model that was implanted. It is important to see and handle the devices when making that choice for the best understanding of how they work and what works with them. The hospital will narrow down the choices for you as they will be buying them but none are perfect for everybody so a little variation is a good thing.

Whilst I wait for the new implant to settle in and be switched on in a few weeks time I must get used to remembering that I have a metal object in my head. Then when it starts to work I will be on the alert for things that may damage it or me. The procedure is irreversible, my ear cannot be returned to its previous state to try again with any guarantees that it will work next time. I will say more about that as I wait to be switched on next month and something of how some of those hazards are dealt with by people and places I might want to visit. Later we will see the reality in action.

DAY SURGERY – NOT LIKELY!

The leaflets and the hospital consistently say this operation can be done as day-surgery. I have worked too long in hospitals in the UK to believe that is the probable outcome though in some countries that work to a different system it is. I would suggest the first precaution is to have a contingency plan for when things don’t go according to plan. In my case it was because of the distance to travel to get to an early admission time of 7.30 am. The rail strike was announced for that day (and later called off but could I be sure that would happen?) secondly I did not want to leave home at 5am and start my day stressed even before my blood pressure was taken. A hotel booked near to the hospital meant a short walk arriving fresh and relaxed with somewhere my wife could stay and wait with tv and internet connections if things took longer than expected. She could easily return at short notice. The same was arranged for the next night so that on leaving the hospital it would be only a short walk without luggage. Dizziness and unsteadiness was a likely complication afterwards for going home on public transport.

My previous blog tells of what happened on the day we set out early for a leisurely trip to London.

I left you all when I was trying to get back to sleep at 2am after the fire alarm went off!

A NEW 'EARA' BEGINS?

After another four hours of trying to sleep and ending up watching the sun come up I gave in and got up to get ready. I had last eaten at 9.30pm the previous evening because nothing was to be had after midnight for the morning operating session. It was a very good three course Italian meal we had. Sips of water only were allowed at 7am to take with my regular daily medications before going to the hospital for admission at 7.30am. On arrival, after that short and pleasant sunny walk up the road, I was advised that the order of the operating list would be decided at the 8.15am team meeting but the doctors would see me before then to do the usual health checks and questions. There was also one other cochlear implant procedure to be done. My name was at the top of the admissions board and written in red. Later when I asked about this I discovered that it was because when they started writing the names on the board that morning they couldn’t find a black marker pen! So there was no sinister motive after all. But at least my name was there first. Ho, ho!

Time came and went but I didn’t. A review of the order had put me second and the morning dragged on with telephone calls to and fro asking for the latest news of the delay. It was then five hours since I last had fluids and so I was given a jug of iced water and told not to have any after 12noon! I knew what that meant, I was now first for the afternoon with two hours of fluid fasting and by then seventeen hours without food. The first CI operation had been more difficult than expected. Patients can only accept what is said to them they are not privy to the personal information regarding another person’s surgery. The waiting has to be accepted. After such a long procedure the operating team had stopped for lunch and thank goodness for that. I didn’t want a surgeon fuelled only by coffee with shaky hands.

2pm became 3pm and we seemed to be heading for a cancellation after running out of time.Then it was my turn and I walked hand in hand with the nurse down to the operating theatre, at least she seemed happy.

There was no way I would be going out tonight. Day surgery it wasn’t going to be!

THE EXPERIENCE OF A TRIP TO LONDON

Coach trip

I had the usual easy local bus journey with my free bus pass (deaf disabled). The coach pickup point is at Gatwick Airport but they seemed to have rebuilt it since I was last there. Moving through the terminal needed constant watch for surprises as people suddenly appeared at my shoulder or overtook me as I looked for the signs. I had my wife with me but it was too noisy to communicate with words.

We followed the directions to the coach stop which was outside.
There was constant background noise from engines running while loading passengers. No visual signs were present to announce delays making several passengers ask fellow travellers what was happening. If I had to do it I would have to resort to using my notebook so they could write down the answers.
A smart phone works well now that so many people use them. They could key in the answers for me to read. This even works in foreign languages which would make me as good as a hearing person or a tourist then!

I switched off and watched the world go by.
Did a bit of lip reading from afar, the young people were 'did you see' & 'OMG' the older ones were into 'do you think ...' & 'I wonder where'. Do hearing people realise how much sign language they use?
The standard BSL expressions are becoming more popular with hearing people. Or am I just noticing them more?
It was not possible to hear the bus staff call out names on the passenger list. What I could do was lip read his request to "stand back".
I was not aware of people coming up behind me with their luggage. Pushing past and in front of me when I am concentrating on lip reading or looking for sign.

The coach has safety announcements like aeroplanes but there is no person to see and lip read. I only knew it happened because I became aware of a rhythmical sound I knew to be like speech. Seatbelts are now compulsory on coaches but no one came around to check.
On planes they think I'm a hazard if ,as a deaf person, I sit next to the emergency door (where the best leg room is) but on the coach no one bothered me.
My wife informs me by writing in my notebook that he phone is playing " going to the chapel ... " I didn't even know the music was on, all I could hear was the engine noise drowning everything.
We last did this road journey when we returned to London to get married 35 years ago.

I switched off my hearing aid as it was of no use in communication and just enjoyed the peace and quiet with the addition of the vibrations from the engine. I get used to the quietness of total deafness very quickly. I appear to be more tuned in than I used to think I did. It's not unusual for me to forget and hold conversations until I stumble with the lip reading and then it goes chaotic and I realise. It amazes me how lip reading can be like hearing the words in my head or just utter gibberish without much in between!

I was alone with my tinnitus which now has no competition and so is making its presence felt and disturbing my peace!

Arrival in London.

The traffic sounds are just noise and over whelming my ability to think. So I switch off my aid and enjoy the solitude. This puts me into hyper-vigilant mode without the distraction. Not a bad thing for moving around London on foot.

The underground.

Going down the escalator one set of stairs have been blocked off and is being attended to by staff talking into radios and a transport policeman on guard. At the bottom of the escalator people are stopping in the narrowed stream of commuters to look back and see what is happening. Three people, two with headphones in and one on a mobile phone are oblivious to the world around them and CRASH! Then they took notice. For those of us needing to keep our wits about us it was just amusing to watch them scattered about.

On the pavement.

I didn't hear the cyclist coming from behind but then nor did the hearing fella with his girlfriend (I presume!) either. He was good at riding his bike but the pavement was very crowded and he bumped the chap's arm on passing. I didn't catch his comment but I could read the cyclist's lips saying sorry! He had turned his head back to say it but kept moving.
The comments where obviously not complimentary as the cyclist took offence and stopped on the pedestrian crossing in the middle of the road to reply in good old Anglo-Saxon English. I wanted to stand in front of him on the pavement and get in his way, show him my deaf badge and demonstrate that not all pedestrians can detect danger from every angle. But he was too fast for me!

At the hotel.

I mentioned to the receptionist that I was deaf and did not hear fire alarms. Would he please be sure to make sure I noticed it by knocking the door down if necessary!
I have found a little bit of humour goes a long way towards expressing a serious point and people remember it better afterwards. He was certainly amused I don't think he had had that request before!

And that is only the beginning of my road to a cochlear implant which happens tomorrow morning.

A post script to this blog.

The fire alarm went off at two am (because the steam from somebody's shower triggered the smoke detector!) I never heard a thing even though the bell was on the wall above the bed. Fortunately I was not alone! No evacuation needed this time but now I can't get back to sleep!