Friday 12th May 2017
Hello Lipreading friends,
I thought that you might be interested to know that after some years of dithering I have decided to seek advice on whether I might be suitable for a cochlear implant.
I had thought that my hearing was getting worse and last December went to see one of the GPs at my surgery. I asked him to refer me to the local hospital but to date I had heard nothing.
One of my lipreading group had her implant in February and is two weeks into her rehabilitation programme. Already the difference it has made to her life is amazing. I am stunned by her success and inspired too, to seek help myself. I know many people who have had a cochlear implant and all have benefitted to some extent but my Friend has been in a league of her own. So fingers crossed.
On Monday 15th May I’m meeting with a consultant to discuss the possibility of a cochlear implant. I am feeling nervous and excited all at the same time. Here’s hoping
Monday 15th May 2017
Met with the consultant, a most charming man. We discussed my hearing, together with my health issues. He was very sympathetic and understanding. I had a hearing test. I also have tinnitus which makes it difficult to know if you are really hearing the high frequency sounds but I did my best. Following the test the consultant explained the results and told me that I had no hearing in my right ear and that both my ears meet the criteria for an NHS cochlear implant. This was necessary for insurance too. This was interesting as for some months I had felt that my hearing in my right ear was fluctuating. I had originally wanted to wait until August because I have so many events to attend I didn’t want to have no hearing in one ear whilst I was doing this BUT as the consultant said I have no hearing in my right ear anyway so I won’t be any worse off. I decided to go for the tests as quickly as possible. I am excited, nervous and cautiously optimistic all at the same time. I am hoping that my insurance will pay for the treatment.
Tuesday 15th May 2017
Told my lipreading group about my experiences and compared notes with my friend. All very supportive. My husband too has said I must have the cochlear implant even if insurance won‘t cover it. He rang the insurance company but was told they needed a letter from my GP so that they could issue an authorisation number. I texted my surgery as I had requested a letter in December.
Friday 26th May
I saw my doctor re a letter requesting assessment for cochlear – one had been dictated in December but had gone no further. This doctor said she would write a letter which I could collect in a few days. I received an appointment for my MRI scan for Monday 5th June!!!
Friday 2nd June
I collected my letter and sent the original to the consultant with a copy for my insurance company.
Over the weekend I emailed all letters and appointments to my insurance company together with an email requesting that they cover this treatment and supply me with an authorisation number.
Monday 5th June
I attended hospital for my MRI scan. The MRI enables the consultant to see what is happening in your inner ears. If you have anything metal it must be removed and then you answer a battery of questions to make sure you are able to go ahead with the scan. It is a strange experience but not unpleasant. I had to lie with my head inside a big tunnel. There was a window a bit like a kaleidoscope so I could still see the nurse when she was there and there was a picture of a beautiful clear sky to focus on. I wore ear plugs and headphones to protect my ears from the noise. The procedure took 10 mins. Throughout this time I was conscious of a pulsating noise very faintly present and also occasionally a whooshing. In the absence of any other noise my tinnitus became very loud! The procedure completed, I was on my way home.
Tuesday 6th June
Told my lipreading group about the MRI scan and again received tremendous support. My friend wondered if I would like to meet with her and her language tutor so that I knew what to expect if I am able to have the implant. We agreed to make a date.
Now have three more appointment dates!
One on Monday 12th June for a hearing test and speech assessment; one for another consultation with the consultant and one for a counselling session with a lady I knew from way back in the 1980’s when I first lost my hearing. Life is funny sometimes.
Bad news from the insurance – they will not cover the cochlear implants. Why are we paying all this money?! We will appeal but must be prepared to fund it ourselves.
Tomorrow is my speech assessment. This is crucial as a cochlear implant is only considered if it will give you better hearing than you already have! I confess I am nervous about this. How will I do? It’s strange to be wanting my hearing test results to be bad. Well what will be will be. I will know tomorrow, possibly.
Monday 12th June
With not a little apprehension I went for my speech assessment with an audiologist who was like no one I had ever met before! She was very patient and kind but also very professional and knowledgeable. I had my hearing test which was different to those I normally have. I had to press the control button when I heard a sound and keep pressing it until the sound stopped. This confirmed an earlier assessment that I had very little hearing in my right ear and not that much in my left ear. She then tested my hearing aids. She inserted a small wire into my ear and put my hearing aid in as well. I didn’t have to do anything the machine checked that my hearing aids were set up correctly, which they were, and then measured how much they could help me. Despite my hearing aids I was still failing to hear because of insufficient hearing.
She told me that I would definitely benefit from a cochlear implant in both ears. I wasn’t sure how I felt at this time. In fact she said the implant would transform my life! OH if that could be true.
Then I had the speech discrimination test. For this I had to sit in front of a large loud speaker box and say what I could hear. NO LIPREADING!!!! This was quite difficult. I wasn’t sure if what I thought I was hearing was correct. For instance I wasn’t sure if I heard clown or crown but I thought I had heard “funny face” in the sentence so I decided it was “the clown had a funny face”. I have no idea if I was right! Listening with my right ear was very difficult.
At the end the consultant told me that it was remarkable how I deduced what I had heard but she didn’t say if I was right or wrong! She also told me that I had 10% conversational hearing in my left ear and 1% conversational hearing in my right ear. I knew my hearing was poor but I hadn’t realised it was so low as that. I was very emotional for a moment and burst into tears. It didn’t last long but I was bit subdued for a while. It is one thing to know you have poor hearing but when you find out exactly what you can or can’t hear it does make you wonder how you manage. LIPREADING mainly.
She said she would recommend that I go forward for the implant programme.
I spent some time reflecting upon this information and found the few people I have told about it very supportive.
No time to be pessimistic!!
I had another appointment with my consultant surgeon. He tested my balance. Some of the tests were weird. First I had to stand still, close my eyes and put my hands together as though in prayer. I had to stay like that for about 2 minutes. I could feel myself swaying sometimes. Next I had to walk in pigeon toes towards the consultant. I haven’t done this since I was a child at school. we used to pick our teams using this. I couldn’t do it with my shoes on so tried without shoes. Not too bad!!
Last one. I had to face forward towards the consultant, close my eyes and march and clap at the same time, again for about 2minutes. I felt that I was doing really well with this. When I opened my eyes I had turned towards my left. It was so weird!
The last test involved lying down and having cold water put into first my right ear and then my left. The consultant explained that he would be watching my eyes. They would be moving from side to side. He said I might feel as if the room was spinning but it wouldn’t last very long. I had no sensation of my eyes moving whilst I lay there and it wasn’t so bad. This was repeated for my left ear.
Afterwards the consultant told me that in my left ear the balance was quite good and in my right ear I had some damage to my balance but it was still OK.
My right ear had the least hearing and balance so this is the one to receive the cochlear implant. He would recommend me to have this and my husband and I agreed we would like me to go ahead with it as soon as possible.
Friday 16th June
I had a counselling session. The lady who came to see me was someone I knew from way back in the 1980’s when I first lost my hearing. She Helped me to learn to recognise what I was hearing then and she will be doing this again when I have had my implant. She also explained to me what the cochlear implant consisted of, what it looked like and where the various pieces would go. She had to tell me that there were risks but that they were slight. Once the implant is inserted there is a 4 to 6 week period where you don’t have any hearing in the implant ear. This is to give the implant and your head a chance to settle before the cochlear is switched on. Once the implant is switched on the hard work begins. You have to learn to recognise what you hear and to understand that you are hearing sounds that you probably haven’t heard for years. Quite a daunting thought. It is likely that you might find everything too noisy at first. Your implant is retuned to give you the maximum benefit but to enable you to hear comfortably. It can be tweaked later. After the explanations came another test. This was a word recognition test. It was very difficult and I couldn’t even make a guess at many of the words. She said we would do the test again when I have had my implant and compare the results? Food for thought! So all tests completed and now to wait for a date.
My insurance have repeated that they will not pay for this implant as my hearing loss is a chronic illness and as such is not covered under my plan!
Well if that’s the case I will just have to pay for it. This means so much to me – to be able to hear friends and family, especially my young grandchildren, would be so wonderful. We all have to make choices and I have always chosen to buy my hearing aids rather than a new car or other things. What will be the next event????
Wednesday 21st June
Visited my GP as I have had a sore throat and would like to get rid of it before my vaccination. Gargles and mouth wash prescribed. Some of this could be caused by my inhalers.
Thursday 29th June
Menigitis vaccination. This is to prevent you getting meningitis during the operation, which is classed as major surgery.
Well it is done – I’ve had my vaccination so am now ready for anything.