Moments in Time

Well, here I am again. I've deliberately not posted any updates for a while so that I could see how things settled down following the fitting of the sound processor and so that I could provide some useful information based on my early experiences.

I attended the outpatient department on the 17th which would have been BAHA Day 07 and the dressings were removed to reveal the titanium implant to which the sound processor would be fitted, this is what was underneath the dressings.

The nursing staff that removed the dressings were extremely pleasant and explained everything clearly, the wound seems to be healing nicely, the stuff above the wound in an antibiotic ointment which has to be applied daily for a while. A probe of some sort was attached to the implant and I was told that the function of this was to check the implant/bone interface to help establish whether things were settled enough for the processor to be fitted, apparently they were which was good. Once this was established and the ongoing care routine instructions passed on I was sat outside to wait for the audiologist to fit and set up the sound processor.

After a short time I went in to to next room where I was introduced the the sound processor and given initial instructions about the various switches on the top of the unit and generally how to use it, it all seemed pretty straightforward.

Then we came to the hearing test which was done with the sound processor connected to a PC which had various software on it to allow the processor to be "matched" to my hearing, or lack thereof, based on previous hearing tests. To be honest this part of the process was a bit of a disaster.

For some reason, something to do with the "team" having to be close together the hearing test was conducted in a room which had a standard room door leading onto a busy corridor, the corridor itself has a hollow floor which generates a hell of a racket with people walking back and forth. On top of this the room was directly adjacent to a children's play area full of toys, which was in enthusiastic use at the time.

It would have been difficult to design a worse environment to conduct a hearing test even if one tried, possibly an airport runway might have the edge. I commented on how unsuitable the environment was but was told that things were that way for organisational reasons. I'm no expert but there MUST be proper sound booths in the clinic/department for this sort of test to be performed in, the current arrangements inevitably result in a sub-optimal test which surely can't be compared to a result obtained in standard conditions?

The problems of the testing environment are evidently recognised. The audiologist at one point went and put a "please be quiet, hearing test in progress" sign on the door which made no difference at all, other than to confirm that this is a known problem.

So, we've now had the test done and the processor fitted, below is how it looks today. This is a very close photo which makes the unit look very large, in fact it is about 20x25mm.

So, what are my early experiences?

I have to be honest and say that when I left the clinic and walked through the hospital and into the outside world I was very disappointed, the outcome was not at all what I had hoped for. Having gone through the operation and the healing period and having had such high hopes I really felt disappointed. My initial reaction was that the unit itself seemed not to work as well as the basic "test rig" I had tried several months ago when I was first evaluated for the procedure. The new unit just seemed to be picking up sound but not in a consistent way which was useful to my brain. Some things seemed louder and some things it didn't seem to pick up at all. I was surprised when I stood a little way from some people talking on my left side that I couldn't tell what they were saying, I had been able to do so with the "test rig".

That was 5 days ago and I have now had the chance to try the BAHA in a number of different environments and to get a far better idea about it's capabilities and limitations. The summary of my experiences so far would be that in some situations there is a definite benefit but that in many situations I have been unable to identify any clear benefit. I have tried to summarise things below, bear in mind that I am deaf in my LEFT ear:

Definite benefit in the following situations:

* In these situations there was an improvement though I had managed in the past.

No real benefit in the following situations:

Where does all this leave me? After five days in all honesty I currently do not feel that the benefits which currently feel limited outweigh the inconvenience of wearing the unit and the ongoing care the operation site will require. The fitting of the unit has definitely not, for me at least, so far been a game-changer.

I fully accept that these are very early days and that it might be possible for things to be improved with further "tuning" and that as time goes by my brain may get better at making use of the additional information it is receiving. I did also read about one case where the unit that had been fitted to a lady from new was actually faulty and she had been struggling for months to find any benefit until the fault was picked up!

It is probably unlikely but it may be possible that the hearing test conditions contributed to the setup of the BAHA not being ideal but this must be unlikely as test will have been conducted on many other patients who presumably have gone on to gain real benefits from their BAHA unit.

My general feeling is that for most of the time there seems to be very little sound, particularly quieter sounds, being picked up by the unit or at least not being heard by me. It seems to me that a lot of sound falls below some kind of "sensitivity threshold" and that I miss things because of this, it's almost as if there is a delay before it gets going! With the BAHA switched on if I rub my fingers together quite hard right next to the processor it seems to pick up absolutely nothing. If I do the same on the other side I can hear it very very loudly and clearly, it just doesn't seem very sensitive. Strangely if something rattles I seem to pick that up better, even though it may be quiet.

All in all I feel that there must be things that can be tried to improve things or as things stand I've got a titanium implant in my skull as an ornament! My plan is to telephone the helpline in the next day or so and see if they can suggest anything. I'm not giving up yet but the bottom, line as things stand for me at least, is that the benefits so far don't outweigh the inconvenience of the implant and sound processor.

Still making steady progress, very much aware of the operation site but it's certainly no longer very uncomfortable but I'm sure that would not be the case if it was subjected to a bump of some sort. There is still noticeable swelling but at least the dressing and healing cap have remained intact which was my main objective between operation day and my appointment tomorrow.

Yes, tomorrow, a big day indeed. My appointment at Freeman Road Hospital (FRH) is in the early afternoon, I am anticipating that at the appointment the dressing and the healing cap will be removed. I think I might take a couple of paracetamol before going as I'm pretty sure that's not going to be that pleasant an experience but we shall see.

Once the dressing is off there will presumably be an assessment of the sate of play and most importantly an assessment of wound healing. If, and only if, the wound is adequately healed my understanding is that the sound processor will be fitted. I'm not sure whether they fit you with the permanent one that you will keep or whether it is a temporary one to try things out, I'll just have to see. If I do get to the point that the processor is fitted it will have to be tuned to my hearing and I'll then be able to see whether this whole process has been worthwhile.

It's hard really to explain how I feel at the moment. I've been almost completely deaf in my left ear for as long as I can remember and the idea of being able to hear in that ear after all this time is just very very difficult to comprehend, I hardly dare imagine that it might work. A large part of how I feel now is knowing that really this is it. If this fails I have nowhere else to go really and I'd just have to accept that the way I've been all these years is the way it's going to be.

Nothing else in the past has worked or helped and it has taken this long for this procedure to mature to the point it is now at and for it to be offered to me. I'd pretty much been consigned to the scrap heap in terms of my hearing impairment until that day months ago when a new specialist nurse appeared at my mastoid care appointment and asked if I'd been assessed. I remain in her debt for suggesting that this might be an option for me and for referring me to Mr Johnson.

In the end what will be will be tomorrow but I really really hope I benefit from what has been done. I think if there isn't a significant improvement I'll still feel that it will have been worth trying anyway, even if only because Id feel that I'd given myself the best shot and tried. What I'm really hoping against hope for is a life-changing result, it's only when I really think about it that I realise what a negative factor it's been all my life and I've just tried to compensate for it.

Amazing how the time passes, it certainly doesn't feel like 5 days since the operation. No dramatic change since Sunday though I'm sleeping much better now and I've got a lot more confidence that the dressing isn't going to fall off overnight, I really wanted it to stay put until my appointment on Thursday.

It just doesn't seem possible that my follow-up appointment is in less than 48 hours time and that it is possible that the processor could be fitted then. I'm still apprehensive about it being fiddled with as it's sure to be pretty sore in there but we'll just have to see and take things as they come.

I remain fascinated by the "sound" I hear when gently touching the implant healing cap and I'm more and more convinced that this could just be a great success. I'm thinking more and more that this operation has the potential to dramatically improve my day to day life and I just really hope it works out like that.

As I go out and about I'm very conscious of people looking at the dressing behind my ear, they must think I've been shot or something and I suppose that's going to be something I'll get used to over time. The other thing I've noticed which I hope will subside is that I'm very very wary of bumping the dressing/implant as I think it would be excruciating, I hope it never happens.

The pain related to facial muscle movement has now largely subsided which is good so I feel that things are going in the right direction. I'm very excited and at the same time apprehensive about Thursday's appointment, it could be a life changer.

Spent another very quiet day today, still feeling a bit kicked about but still haven't needed to take any painkillers which is good. In the second half of the day I started to feel a bit of a change in that the operation site is not quite so sore and doesn't hurt as much in response to certain facial muscle movements which is nice. Managed to sleep pretty well last night too which was good so I started today in a better place than yesterday.

Curiosity is starting to set in a bit and I started a little tentative exploration of the dressing and operation area with my fingertips. The area around the operation currently feels strangely numb and is a bit swollen but nothing dramatic, I guess that's pretty understandable given what has been done. I find it alarming to contemplate that the sound processor might be fitted in just 4-5 days time, I can't help but think that it would be very uncomfortable having things fiddled about with at this stage but I'll just go with the flow.

I made a discovery this evening which I found very very exciting. If you look at the photo below I believe the arrowed cap covers the titanium implant itself and I believe it is in contact with the implant.

With this in mind I VERY gently brushed the tip of my finger against the surface of the cap, hardly touching it, and I could hear it! I could hear it really quite clearly and I think the touch of my finger was being transferred to the implant, into the bone the implant is sited in and from there through the bone to activate my inner ear and via the auditory nerve to the brain to be interpreted as sound.

This was very exciting for me. As a comparison I brushed my finger against the outer pinna of my ear and could hear nothing whatsoever but I know that if I do the same on the right side I can. I may be wrong about this but I'm pretty sure that this little experiment indicates that a vibration, for that is what sound is, can now be "heard" by my inner ear on the left side which is extraordinary, I've never heard anything much in my left ear since childhood!

I just really hope I'm right, if I am I think this might just work brilliantly, I'm going to be more nervous when I try this for real with the processor fitted than I think I have ever been.

If anyone is interested here is a short video illustrating BAHA surgery, I think I made the right decision to watch it after the operation rather than before.

First post-operative day today. Felt strangely apprehensive about going to bed last night as I didn't want to end up lying on the operation site in my sleep but in the end tiredness got the better of me. I finally got off to sleep in the early hours and in fact did wake up lying on the side that had been operated on and I was surprised turning onto it hadn't woken me up. The dressing seems to be staying in place fine which is good, I really want it to stay there until next week's review appointment so that it has the best possible chance of healing and staying infection free.

In terms of pain I have had some discomfort, nothing more than that and I have not felt the need to take any painkillers at all and that's not down to bravery for sure! One real surprise to me today was when I looked down at my legs this morning, I found that a large area of my right upper thigh has been shaved and was a bare as a baby's backside! Nobody had mentioned that this was going to happen and my assumption is that is was to allow the connection of the diathermy (monopolar) to stop bleeding during the operation. Had quite a laugh when I saw it!

It's quite surprising to feel just how much scalp movement there is related to facial expression. I find when I move the muscles of my face, especially by raising my eyebrows, that this causes quite a bit of discomfort around the operation site. This will subside over the next few days I'm sure. Simple answer to the problem, don't raise eyebrows!

Have to confess to having been feeling a bit sorry for myself today. As things stand I've taken what feels like a step backwards as I was managing Ok but now I feel that I've got all the disadvantages of being deaf and I've now also got the discomfort of the operation site and the peg in my skull to go with the deafness. If things are much improved when everything has settled down and the processor is fitted it will of course all have been worth it but as things stand just now I have the worst of both worlds.

So, apart from that there has been no real change, I had expected to feel really +ve with the operation now behind me and I guess that feeling a bit low about things may also be in part due to the anaesthetic but who knows, I am sure it will pass. For the moment I'm just looking forward to the time when the processor is fitted and hoping for the best, it's great to at least have been given the chance of an improvement and I'm very grateful for that.

My appointment to have the titanium implant of my new Bone Anchored Hearing Aid (BAHA) fitted meant arriving at the Freeman Road Hospital at 07:30 this morning to check in to the Day Treatment Centre (DTC). Arriving at the hospital the environment was clean and welcoming and it was nice to see that the corridors were clear and not filled with equipment which is often the case in many NHS organisations I have visited.

The tone of the day was pretty much set by two incidents before we even arrived at the centre. A hospital porter we met in the corridor at 07:20 greeted us with a cheery hello and a member of nursing staff, unprompted, asked us whether we were Ok or whether we needed directions. Some of my past and recent experiences of the NHS have left a great deal to be desired but here we were off to a good start. First impressions really do count and ours were good.

The staff in the DTC could not really have been more pleasant and helpful, we were greeted immediately and politely which is all that is required. I was impressed by the environment that we were asked to wait in which was clean, modern and nicely furnished with low tables and comfortable chairs and sofas, quite unlike many NHS waiting areas. There was a large flat screen TV on the wall for entertainment which was appreciated. As you can see below, a lot of thought had been given to these patient waiting facilities:

One point I particularly noted was that a member of nursing staff regularly went into the waiting room to help particularly some of the older patients with their overnight bag which was nice to see and which was clearly appreciated.

I was called into the clinical area where pre-operative checks are done at 08:10 which was fine. I was soon in a hospital gown and was provided with a lockable locker for my gear. This system seemed to work well and is definitely better than an unsecured bedside locker. The area was occupied by men only which surprised me in a day case unit but which is clearly how things should be.

In this area I became aware of what was to be my only significant criticism of the service and arrangements. The trolleys and chairs that the patients were provided with were fine but they were separated only by curtains. There will be reasons for this but this is an unsuitable area for patients to be asked about their medical histories, allergies and to be asked to give informed consent to surgery as well as to ask any questions.

It is simply not possible to maintain privacy and confidentiality in these conditions. I sat in my "bay" and even though my hearing is poor I listened to what should be confidential discussions being held between doctors, nurses and patients, often in great detail. Under the current arrangements confidentiality is not maintained and it is quite impossible for other patients to avoid overhearing these discussions. It would be entirely possible in this situation to sit and listen to the medical details of a friend or neighbour who may well want them to be kept private, this is not acceptable.

During this time I was seen by the surgeon, Mr Johnson, the anaesthetist, and several members of the nursing staff all of whom were polite, professional and helpful, it was not possible to find fault, I couldn't have asked for better care. During the course of my discussion with Mr Johnson he indicated that if the wound heals well they may fit the sound processor NEXT THURSDAY! I was amazed, that's just 6 days after today's surgery and I was expecting it to be far longer than that based on the literature I had been given, things had clearly moved on.

Whilst I waited for my turn I had a nice chat with a guy in the next bay, Ray, who already had one BAHA fitted in his right ear and who was now having his left ear done because his hearing in that side had now deteriorated. He has been delighted with the outcome and couldn't speak highly enough of the device he has received and the outcome in terms of hearing improvement. This was music to my ears (well, the one that works at any rate) as it's good to hear these things face to face from someone who has actually been on the receiving end of the procedure. This all left me feeling very optimistic and I hope all goes well for the guy with his second BAHA.

My initial estimated operation time was 10:30 but I was finally collected at about 11:30. I was not at all concerned about this, as far as I am concerned day case surgery means that, it takes a day, not a couple of hours. Having something like this done as a day case is light years ahead of the previous long stays that people have had to go along with and it was a good opportunity to read a book and generally watch the world go by.

I was pleased and reassured by the number of times throughout this whole episode that my ID and details were checked and confirmed. These were not just cursory checks but proper detailed checks at every stage, everyone I met actually read my name band and checked the details with me. Some may feel this is overkill, I think it vital and it is very reassuring to feel that people are in control of what they are doing and who they are doing it to.

The theatre staff I encountered again could not have been more pleasant as was the porter and the member of nursing staff who took me down to the theatre. I did not feel that I was simply a number but was made to feel like a human being at a time when you do feel pretty vulnerable.

Once off to sleep the work of the day was done and I woke up in the recovery area at 13:00, about 15 minutes after I left theatre. I vaguely remember the tube being taken from my throat which was no big deal and I was very soon feeling wide awake with no residual nausea or dizziness. I was aware of the fact that something has "been done" behind my left ear but I was not in anything that could be described as pain, I was perfectly comfortable. So, the surgery itself seems to have lasted up to 40 minutes as far as I was able to piece together. I was in the recovery area for about 30 minutes chatting to again a very pleasant group of staff and I was back in the DTC at 13:35.

Soon after returning to the DTC the drip I had in was taken down and I was given a VERY welcome serving of toast, marmalade and coffee. Once I felt ready I was able to dress, I was given my instructions about the follow up appointment and a discharge summary to be delivered to my GP.

Whilst waiting to depart in the DTC I watched a member of staff carefully washing the couch covers with cleaning fluid and then all the linen was changed ready for the next people. It was nice to see that it wasn't just a case of changing the sheets, I just generally formed the impression that things were being done properly.

I actually left the DTC at 14:30, 7 hours after arriving. Given that I had:

I think this is very impressive indeed. The result of all this is shown below, quite a change from the "before" photographs.

In terms of pain it is now about 6 hours since the operation. I felt what I regard as minor discomfort for a few hours but nothing to be concerned about, I have taken no painkillers at all at this stage. If this changes I'll comment on this in a future post.

For now my summary would be that the whole experience has been a very positive one and all the staff I came into contact with were excellent. I felt well looked after and in safe hands at all times and as a patient that is what I really want. The only negatives about my experience were the privacy and confidentiality issue outlined above which I do feel needs to be addressed and there is of course the issue of the cost of car parking which I regard as nothing less than a means of extracting money from a captive market. The parking issue is obviously not a matter for the clinical staff but a management issue and an issue which many people will share my views on.

I'm now at the Freeman Road Hospital (FRH) in the ENT Day Treatment Centre where I'm undergoing the checks prior to my operation later today. Hopefully all will go well and I'll post an update once the surgery is over and let folks know of my experiences of the day.

The information and documentation provided prior to my arrival has been very comprehensive and there has been plenty of opportunity for me to ask any questions I may have had prior to getting to this point. I found the information booklet informative, clear and very useful. I think some of the information isa little out of date (time from operation to processor fitting for example) as techniques have evolved and improved since publication, I note that the document is scheduled for review in April 2014.

I like having a specific contact number to get directly through to one of the specialist members of the team rather than having to mess about with extensions and switchboards, I just hope I won't need to use it too much.

Onward!

Not long now, I have to be at the Freeman Road Hospital (FRH) at 07:30 in the morning to go through all the checks etc. before my surgery to fit the titanium implant to my head to which the BAHA will eventually be fitted. Yesterday we took a photo of the area that the operation will take place in, just as a record as it will never look the same again, as you will see as these postings progress. This is the photo taken yesterday before my pre-surgery haircut:

I thought I should have my hair cut before the procedure even though the area of "interest" will be shaved to make things as clean and convenient as possible so I duly pottered off to my usual place this morning. This is what the surgeon, Mr Ian Johnson, will be presented with tomorrow, it's a strange feeling knowing that it will never be the same again!

I don't mind admitting that I'm feeling pretty apprehensive but in the grand scheme of things and in comparison with what many people endure it's small beer, but it does feel just a bit more than small beer when it's your own head that you are writing about!

Hopefully I'll be feeling pretty Ok by later on tomorrow and things will then have changed somewhat, I'll keep you posted, the story really begins right here.

Well, the time is almost here. At the end of this week I'll be going into hospital to have a Bone Anchored Hearing Aid (BAHA) fitted to help with my hearing, I have been essentially completely deaf on my left side for the vast majority of my life. The picture below explains a little about the BAHA and how it works:

If anyone hasn't experienced one-sided deafness it is an extremely frustrating and socially isolating condition, may times people think you are downright rude for ignoring them when the truth of the matter is that you simply haven't heard what they have said to you. If someone calls you from any distance you have no idea what direction the sound has come from and you end up frantically looking around for the source of the sound, you also have no idea which direction traffic is approaching from.

My problems started when I was small with endless recurring ear infections which were just dreadful. In the old days these were treated with the removal of first my tonsils and then my adenoids, both of these procedures were unpleasant and completely useless, nothing helped at all.

I lived for years with the recurring ear infections until, when I was working in London, I developed what had become a much more serious problem, a cholesteatoma. This was eventually diagnosed by the late Alan Fuller who treated it with the seriousness it deserved and informed me that he would need to perform a radical mastoidectomy as a matter of urgency. Alan Fuller was at the time the ENT surgeon to Her Majesty The Queen so I took what he said very seriously.

Alan Fuller:

I was duly admitted for surgery and essentially Mr Fuller almost certainly saved me from a cerebral abscess with all the potential major problems that would have brought me. When he opened up my mastoid he was met with a more serious problem than he had anticipated (no CT or MRI scanners in those days) in that the covering of my brain (the dura mater) had been exposed by the developing cholesteatoma which had eroded through my petrous bone. This complication destroyed the small bones of my middle ear and the opening into my skull vault had to be patched up once the cholesteatoma had been removed.

All this was very unpleasant and in the end I was left with a safe but completely deaf ear as the conduction mechanism of the ear, the middle ear, had essentially gone. Sound was now unable to travel to the inner ear to be passed to the brain, my left ear was rendered useless. The sadness of all this was that my inner ear actually remained functional, the auditory nerve itself was fine, but it has effectively remained dormant for all this time.

Regular checkups kept things in order, I tried a conventional "in ear" hearing aid which was useless as the conduction mechanism in the middle ear no longer existed and the lack of circulating air just led to infections and the whole thing was very disappointing.

On one of my regular checkups a new nurse practitioner asked me whether I had ever been evaluated for a BAHA, I had no idea what she was talking about but when she explained things to me I was keen to try it out. After a period of waiting I met the consultant at The Freeman Road Hospital (FRH) in Newcastle-upon-Tyne, a Mr Ian Johnson. Mr Johnson was an exceptional guy, he took great care and as much time as I needed to explain everything and instilled great confidence. I didn't know at the time but apparently the Northern Ear Implant Centre at FRH has done a huge number of these operations and is the largest centre in the UK, I had been fortunate indeed.

I was able to try out a simulator unit and walk around the hospital wearing it. This unit presses behind your ear and simulates the kind of result you could expect with a BAHA fitted. The results are supposed to be about 75% as good as the implant itself. I was amazed, after all these years of deafness, to find that I could actually hear in my left ear. It was really very very strange but I was sufficiently encouraged to go ahead and I have been waiting for my appointment which is finally upon me.

I have to admit that I feel very apprehensive about the whole thing. I feel confident in the unit at FRH that I am in the care of but it's the personal side of things that concerns me. Inevitably having a metal "peg" permanently attached to your head will bring with it a set of inconveniences which I will have to get used to. I'm not really sure how painful things will be after the procedure as these things are different for everyone but suffice to say I'm not looking forward to finding out! In addition to this having the BAHA unit in situ immediately labels you has deaf and in some way disabled which is something I will just have to get used to I guess, this is what it will probably look like.

So, Friday 11th of October is the big day. My intention is to try to keep this blog updated from time to time with my progress in the hope that it might in the future prove to be a useful resource for anyone thinking of going down this route. Anything posted will be an entirely honest representation of my experiences as a patient.