At last, today was the day to go back to the SOECIC and have my implant switched on and connected to my processor....I was feeling a bit nervous, very excited and slightly emotional about it all, not to mention having had the strangest dreams the past few nights!
So, we arrived nice and early and got talking to a few people while we were waiting, one was a lovely lady who was back for her 1 year follow up and she could do nothing but rave about her CI, so she made me feel very hopeful in that it is a long journey yet but it is definitely worth it all as it all settles down and progresses.
I went in to one of the hearing test rooms with my Mum, Mike and a lady called Mary, who also had a student sitting in with her.....the computer was fired up and the tuning in started. One by one she was setting different levels as to how I found various noises comfortable, this was really strange to have some kind of sound back in that ear, but was quite hard too to know what was too loud or too soft for every day. Anyway, we worked through all 22 electrodes and then she turned it on....all of them together and wow! it was mad......so loud and high pitched beeping and shrieking, so it was all a bit much and was making me wince so it was turned down and some electrodes were turned off for now and it left only 7 switched on!
To start with I did feel disappointed that it was all just beep beep beep, but knew from expectation reviews that everything is gradual and it takes a LOT of getting used to to get these beeps to make any kind of sense and feel normal. So the device was set and I was told that hopefully more should be added on Friday when I go back again and it will have settled down for me. As I type this 7 hours after, all I am hearing still is beeps for different sounds - it is hard work and if i'm honest, it is driving me a bit mad, but I need to stick with it and let my brain do it's thing.
After the tuning session there was rehab with Nicola and that was quite funny, I had to try and pick out different syllables with words she was saying or how many times she was saying a word.....so she was sat there going 'Baa' or 'Baa Baa' or 'Baa Baa Baa' and without looking I had to guess which one she had said....I couldn't hear the actual word but just had to pick up how many she was saying....sounds so simple but as this is going back to totally retraining my brain, I did have to concentrate a lot - I felt like I was at infant school!
Nicola also then moved on to words and I had to point to which one she had said (without looking at her) e.g . Disc, Disco or Discotheque. All of these tests went well and as expected at this stage so I felt happier after that.
Then it was time to head out in to the big wide world....beep beep beep!
I was taking my Mum home in the car as Mike went in to the office straight after and as I was driving, she phoned my Dad and although I clearly couldn't hear words, I could tell she was talking and when.
Then, as I turned the car in to their lane I heard a tick tick (in beep format!) and realised I could hear my indicator! so I was grinning stupidly when we got to the house, it felt daft with something so small but I haven't heard that in years. Then at my parents house my Dad phoned the home phone from his mobile and I heard it ring!! Mad, we all just giggled and grinned and I left there feeling very happy.
I then got home and logged on for work and all afternoon it has been beeps while I type or click my mouse, or the door blows in the wind....all very, very strange as I can't work out what the beeps are unless I know I am doing something but the main thing is that there is sound.
I have been phoning the home phone from my mobile a few times too and I can hear it ringing from the kitchen :-)))
This has been quite a tiring day what with the tuning, rehab and working again for the first time since the op, but all for good reason and hopefully there will be lots of updates to this blog over the next few weeks as I hear various things and get stupidly excited ;-)
Monday, 9 August 2010
Thursday, 22 July 2010
Post-Op & Something from the Apple Shop??
On Wednesday, I was back at the SOECIC for my post-op appointment with my surgeon Mr Hellier.
All went very well, the sutures were removed, as was the dressing inside my ear, it felt lovely having all of that taken off and Mr Hellier was very pleased with how it had all healed up.
But....bless him! he was SO disappointed about me getting the blood clot, he just kept apologising....I am his first 'clot' ever! I know it wasn't anything he did or didn't do, it was just one of those things, so he was very sweet about it all.
I was given the go ahead to wash my hair, gently! I must not rub around the implant or scar area because of the clot, so yesterday morning I was so, so careful doing that.....It did feel lovely afterwards though after 16 days of no washing and dry shampoo!
So, all is going very well from that side of things, it is just the clot now that I have to recover from and take my time with.
After this appointment, I then had an IT training one. I was given my box of goodies and everything inside it was explained to me how it is all going to work.
I was gobsmacked! The case is huge and all shiny and white with a silver 'cochlear' symbol on the side of it - it really does look like we have been to an Apple shop and made a very expensive purchase! It is really heavy too.
Inside were so many boxes containing all of the bits and pieces....the processor itself, batteries, chargers, the remote control, accessories, different coloured covers, earphones, microphone, adaptors for TV.....the list goes on and on - there is a lot to learn !
I was hoping that evening that Mike and I could play hunt the implant in my head by using the magnet on the processor, but I have to keep it away until my 'switch on' as it is all still healing.
All very exciting stuff now and I can't wait until I go back for my first tuning session - this is going to be on Monday 9th August, so not too long to wait now at all :-))))
My leg doesn't feel too bad at all now, so hopefully things are moving in the right direction there. Still have to have twice weekly blood tests, so today i'm off to see the nurse again for the next one....wish me luck!
All went very well, the sutures were removed, as was the dressing inside my ear, it felt lovely having all of that taken off and Mr Hellier was very pleased with how it had all healed up.
But....bless him! he was SO disappointed about me getting the blood clot, he just kept apologising....I am his first 'clot' ever! I know it wasn't anything he did or didn't do, it was just one of those things, so he was very sweet about it all.
I was given the go ahead to wash my hair, gently! I must not rub around the implant or scar area because of the clot, so yesterday morning I was so, so careful doing that.....It did feel lovely afterwards though after 16 days of no washing and dry shampoo!
So, all is going very well from that side of things, it is just the clot now that I have to recover from and take my time with.
After this appointment, I then had an IT training one. I was given my box of goodies and everything inside it was explained to me how it is all going to work.
I was gobsmacked! The case is huge and all shiny and white with a silver 'cochlear' symbol on the side of it - it really does look like we have been to an Apple shop and made a very expensive purchase! It is really heavy too.
Inside were so many boxes containing all of the bits and pieces....the processor itself, batteries, chargers, the remote control, accessories, different coloured covers, earphones, microphone, adaptors for TV.....the list goes on and on - there is a lot to learn !
I was hoping that evening that Mike and I could play hunt the implant in my head by using the magnet on the processor, but I have to keep it away until my 'switch on' as it is all still healing.
All very exciting stuff now and I can't wait until I go back for my first tuning session - this is going to be on Monday 9th August, so not too long to wait now at all :-))))
My leg doesn't feel too bad at all now, so hopefully things are moving in the right direction there. Still have to have twice weekly blood tests, so today i'm off to see the nurse again for the next one....wish me luck!
Tuesday, 13 July 2010
Ooops! correction!
Just been advised by Mr J to update my blog - the Warfarin is to control the clot rather than thin my blood......the injections are to thin my blood.
Silly me, the downfalls of being not only deaf, but blonde too ;-)
Silly me, the downfalls of being not only deaf, but blonde too ;-)
Blood Clots & Needles
So......yesterday didn't turn out like I expected!
I'd been feeling a pain in my left calf muscle since Saturday afternoon, kind of like it was pulled or torn but didn't think too much of it, but when it was still sore on Sunday and I got to thinking about how I hadn't actually done anything to aggravate it and then remembered the risks of thrombosis after surgery, then I though it would be best to get Mike to call the Dr's first thing on Monday morning and have it checked out.
So, very impressively, Mike managed to get me in to the Dr's for 9:30 yesterday and after being checked out, my Dr sent me straight to the hospital where I had ultrasound on my legs and they found the clot - drat!
From there, I then was wheel chaired to another part of the hospital for treatment and once there I had 3 test tubes of blood taken for testing and then the most painful injection ever in my stomach to thin the blood. I was then given a whole new load of meds and needles, along with a booklet of info about it all/
Basically, every day now for the next week, a nurse will come to the house to inject me in the stomach and take blood and then later that day I have to take Warfarin to thin my blood - I will have to take this for 3 months and will have loads of visits to the Dr's over the next few months.
I will also have to carry a card with me that lets people know I am taking this, in case something happens and for e.g. I cut myself, my blood won't be clotting as normal.
All a but rubbish really and it feels like a set back as I am not feeling too bad otherwise with my CI and it seems to be improving little by little each day, but now it is even longer that I have to sit still, feet up and do nothing - argh!
But I do know that I am very lucky to have had this checked out and treated and hopefully disperse the clot before it moves and does any damage, which I only know too well can be fatal.
When I got up this morning my leg felt worse and a lot tighter, but after taking my pills for my CI, it felt a little better....the nurse came and saw me and injected me about an hour ago - my poor tum is going to be like a little pin cushion after all this :(
I'd been feeling a pain in my left calf muscle since Saturday afternoon, kind of like it was pulled or torn but didn't think too much of it, but when it was still sore on Sunday and I got to thinking about how I hadn't actually done anything to aggravate it and then remembered the risks of thrombosis after surgery, then I though it would be best to get Mike to call the Dr's first thing on Monday morning and have it checked out.
So, very impressively, Mike managed to get me in to the Dr's for 9:30 yesterday and after being checked out, my Dr sent me straight to the hospital where I had ultrasound on my legs and they found the clot - drat!
From there, I then was wheel chaired to another part of the hospital for treatment and once there I had 3 test tubes of blood taken for testing and then the most painful injection ever in my stomach to thin the blood. I was then given a whole new load of meds and needles, along with a booklet of info about it all/
Basically, every day now for the next week, a nurse will come to the house to inject me in the stomach and take blood and then later that day I have to take Warfarin to thin my blood - I will have to take this for 3 months and will have loads of visits to the Dr's over the next few months.
I will also have to carry a card with me that lets people know I am taking this, in case something happens and for e.g. I cut myself, my blood won't be clotting as normal.
All a but rubbish really and it feels like a set back as I am not feeling too bad otherwise with my CI and it seems to be improving little by little each day, but now it is even longer that I have to sit still, feet up and do nothing - argh!
But I do know that I am very lucky to have had this checked out and treated and hopefully disperse the clot before it moves and does any damage, which I only know too well can be fatal.
When I got up this morning my leg felt worse and a lot tighter, but after taking my pills for my CI, it felt a little better....the nurse came and saw me and injected me about an hour ago - my poor tum is going to be like a little pin cushion after all this :(
Sunday, 11 July 2010
The worst part is over!
Back home :-))))) and I am so pleased to be here.
I went in to hospital on Monday and got settled in, had some food and unpacked. Was feeling surprisingly calm if a little emotional after opening some cards and then Mike having to leave me at 8pm as we didn't think he would be allowed back in first thing before I went for my op as it is outside of visiting hours. But, all in all not too bad at all and slept pretty well considering what was about to happen.
Woke up early and still felt strangely calm, was nil by mouth so wasn't allowed anything at all and was then asked to go and have a shower...when I got back, Mike was there which was just brilliant and made me so so so happy.
I got changed in to my lovely surgery gown and here is a pic of me modelling it ;-)
Mr Hellier, my surgeon, came and checked on me and drew an arrow on the left handside of my neck to make sure that the implant was put in the right side
As you can hopefully see, I really did feel so calm about it all.
Then Patrick, a male nurse said it was time to go to Theatre, so I walked down there with Mike, until we got to the point where he wasn't allowed to go any further, it was so hard saying goodbye to him, but I was just so pleased to have seen him again before going in.
I then went through to a waiting area prior to my anesthetic and lay on a bed while lots of questions were asked....it felt a little like a conveyor belt as each person went in, we moved up in the line. Then it was my turn and I was wheeled through to an area just outside of the operating theatre, I remember loads of kids stickers on the ceiling and walls and remember thinking how my godchildren, Jack & Lucy would like them, then it was time for the drip to go in my arm and a needle in my hand for the drugs I would need....then off we go.....I can't remember anything else until four hours later and being woken up in recovery.
Now, this really was the worst part of it all, I felt terrible and just couldn't get back to sleep. I had a blood pressure monitor on my arm that was inflating and squeezing every couple of minutes, plus some thrombosis preventing wraps on my legs that were constantly inflating and squeezing and it was all making me feel really queasy. My head was so sore, the compression bandage was so tight, my throat really hurt, I could taste the anesthetic and I was dying for a drink.....oh, and my ears were ringing like they had never rang before. I was just lying there thinking what have I done!!
But! after an hour and a half I was back at my ward and moved in to my bed where I slept until 4pm and that is when Mike and his Mum arrived. Initially I was pretty groggy, but I sat myself up and the more we were talking to each other the better I felt and within an hour or so, I felt a bit more okay about it all....I could drink again then and also ordered my tea.
My bandage was so tight though that I was already really looking forward to getting that off as I felt like I was just frowning at everyone.
We opened all of our anniversary cards and they stayed with me until visiting time was over at 8pm.
I then had a visit from my lovely friend Liz who is a Sister at the General and she came and saw me after her shift.
After this I still wasn't feeling too sleepy and so read for a while until lights out at 10:30.
Only to be woken at 11pm for anti-biotics, then again at midnight for blood pressure, pulse and temp....then 2:30 for blood pressure etc and at 5:30 too, then 6am for more anti-b's. I think apart from all of this I may have slept okay.
The Weds I was expecting to feel really tired and sleepy but I wasn't too bad at all, I knew I had an x-ray so I think I was keeping myself awake for that. I was collected for this at just after 2:30 and it all happened quite quickly and I was back at the ward by 3:15 where my sister was waiting for me armed with Lucozade, magazines and chocolates :-). Then it was a lovely, steady stream of visitors....Paul, Liz, my Mum & Dad, Mike, Sheila and Kev - I was totally spoilt with lots more cards and presents.
Then a later lights off at 11pm and I was just wanting to go to sleep and wake up knowing i'd becoming home the next day - I couldn't wait.
I woke feeling really tired and after having my pills, the nurse came and took my compression bandage off.....oh, the relief!! I could feel my forehead moving back in to place, it just felt so nice.
I was then told I would be allowed to go home in about an hour after getting a discharge letter and a massive supply of pills for the next week or so.
I texted Mike and by the time I showered carefully from shoulders down, got dressed and packed, he was there and it was time to go.
It felt so strange walking out of the hospital and in to the car, but I was so pleased to be going home.
I was greeted by a sleepy but excitable Dylan and as instructed I made a little fuss of him but not too much and then washed my hands straight away - poor boy must have been wondering what on earth has been going on these last few days.
Mike was just absolutely brilliant and made me sit and not move or do a thing, he has just looked after me brilliantly - an absolute star!
I had lots more cards waiting for me and then had a visit from my bro and sis-in-law, my Mum & Dad plus a friend, Jim came round later on as well.
I wanted to see how my scar looked and how much hair had been shaved off so some pics were taken and I was a bit shocked at the amount of hair....the scar looks very neat though.
So, it is just great to be back home and am feeling a little better as each day goes on. I have been utterly and totally spoilt by all my family, friends, my work and even Mike's work too which was a very lovely surprise - our house is looking like a beautiful flower shop right now.
Will log off for now as this has taken ages to do and i'm really starting to feel tired and want to feel up for my next lot of visitors - my gorgeous godchildren, this afternoon so will finish up here but hopefully back soon with more updates as everything progresses from here.
As I have titled this one, the worst is over and it really does just feel like everything now is just going to get better and better.
I went in to hospital on Monday and got settled in, had some food and unpacked. Was feeling surprisingly calm if a little emotional after opening some cards and then Mike having to leave me at 8pm as we didn't think he would be allowed back in first thing before I went for my op as it is outside of visiting hours. But, all in all not too bad at all and slept pretty well considering what was about to happen.
Woke up early and still felt strangely calm, was nil by mouth so wasn't allowed anything at all and was then asked to go and have a shower...when I got back, Mike was there which was just brilliant and made me so so so happy.
I got changed in to my lovely surgery gown and here is a pic of me modelling it ;-)
Mr Hellier, my surgeon, came and checked on me and drew an arrow on the left handside of my neck to make sure that the implant was put in the right side
As you can hopefully see, I really did feel so calm about it all.
Then Patrick, a male nurse said it was time to go to Theatre, so I walked down there with Mike, until we got to the point where he wasn't allowed to go any further, it was so hard saying goodbye to him, but I was just so pleased to have seen him again before going in.
I then went through to a waiting area prior to my anesthetic and lay on a bed while lots of questions were asked....it felt a little like a conveyor belt as each person went in, we moved up in the line. Then it was my turn and I was wheeled through to an area just outside of the operating theatre, I remember loads of kids stickers on the ceiling and walls and remember thinking how my godchildren, Jack & Lucy would like them, then it was time for the drip to go in my arm and a needle in my hand for the drugs I would need....then off we go.....I can't remember anything else until four hours later and being woken up in recovery.
Now, this really was the worst part of it all, I felt terrible and just couldn't get back to sleep. I had a blood pressure monitor on my arm that was inflating and squeezing every couple of minutes, plus some thrombosis preventing wraps on my legs that were constantly inflating and squeezing and it was all making me feel really queasy. My head was so sore, the compression bandage was so tight, my throat really hurt, I could taste the anesthetic and I was dying for a drink.....oh, and my ears were ringing like they had never rang before. I was just lying there thinking what have I done!!
But! after an hour and a half I was back at my ward and moved in to my bed where I slept until 4pm and that is when Mike and his Mum arrived. Initially I was pretty groggy, but I sat myself up and the more we were talking to each other the better I felt and within an hour or so, I felt a bit more okay about it all....I could drink again then and also ordered my tea.
My bandage was so tight though that I was already really looking forward to getting that off as I felt like I was just frowning at everyone.
We opened all of our anniversary cards and they stayed with me until visiting time was over at 8pm.
I then had a visit from my lovely friend Liz who is a Sister at the General and she came and saw me after her shift.
After this I still wasn't feeling too sleepy and so read for a while until lights out at 10:30.
Only to be woken at 11pm for anti-biotics, then again at midnight for blood pressure, pulse and temp....then 2:30 for blood pressure etc and at 5:30 too, then 6am for more anti-b's. I think apart from all of this I may have slept okay.
The Weds I was expecting to feel really tired and sleepy but I wasn't too bad at all, I knew I had an x-ray so I think I was keeping myself awake for that. I was collected for this at just after 2:30 and it all happened quite quickly and I was back at the ward by 3:15 where my sister was waiting for me armed with Lucozade, magazines and chocolates :-). Then it was a lovely, steady stream of visitors....Paul, Liz, my Mum & Dad, Mike, Sheila and Kev - I was totally spoilt with lots more cards and presents.
Then a later lights off at 11pm and I was just wanting to go to sleep and wake up knowing i'd becoming home the next day - I couldn't wait.
I woke feeling really tired and after having my pills, the nurse came and took my compression bandage off.....oh, the relief!! I could feel my forehead moving back in to place, it just felt so nice.
I was then told I would be allowed to go home in about an hour after getting a discharge letter and a massive supply of pills for the next week or so.
I texted Mike and by the time I showered carefully from shoulders down, got dressed and packed, he was there and it was time to go.
It felt so strange walking out of the hospital and in to the car, but I was so pleased to be going home.
I was greeted by a sleepy but excitable Dylan and as instructed I made a little fuss of him but not too much and then washed my hands straight away - poor boy must have been wondering what on earth has been going on these last few days.
Mike was just absolutely brilliant and made me sit and not move or do a thing, he has just looked after me brilliantly - an absolute star!
I had lots more cards waiting for me and then had a visit from my bro and sis-in-law, my Mum & Dad plus a friend, Jim came round later on as well.
I wanted to see how my scar looked and how much hair had been shaved off so some pics were taken and I was a bit shocked at the amount of hair....the scar looks very neat though.
So, it is just great to be back home and am feeling a little better as each day goes on. I have been utterly and totally spoilt by all my family, friends, my work and even Mike's work too which was a very lovely surprise - our house is looking like a beautiful flower shop right now.
Will log off for now as this has taken ages to do and i'm really starting to feel tired and want to feel up for my next lot of visitors - my gorgeous godchildren, this afternoon so will finish up here but hopefully back soon with more updates as everything progresses from here.
As I have titled this one, the worst is over and it really does just feel like everything now is just going to get better and better.
Sunday, 4 July 2010
The day before
I haven't been very good at updating this recently - i've been meaning to for a couple of weeks now, but one thing or another keeps getting in the way.
But.......as tomorrow is the day I go in to hospital for my op on Tuesday, I thought it was about time I did.
So, about a month ago I was given a provisional date of the 6th of July, which is a date very familiar to me, it is our wedding anniversary. But nothing was definite, or at least until all the paperwork came through 2 weeks ago confirming the date and advising that I would be going in to hospital the day before....so all very romantic - hospital food for me and dinner for two for Mike and the dog!
But it is all very exciting if a bit scary!
Since our last appointment as a group, myself, Paul and Kim have been keeping in touch and updating each other of our progress. Paul was given a date of 30th June but Kim was still yet to hear....and then a week ago Friday she was told a slot had come up at the QA for her for the 2nd July, so the 3 of us are all being implanted within a week, but all at different hospitals and with different surgeons, Paul was at the Nuffield and I am at Southampton General.
Have had a couple of updates from Paul and he is recovering well and has had his compression bandage removed which he said felt lovely.....he has been feeling very tired though.
Kim, I am waiting to hear, but I did go and visit her at the QA on Thursday when she arrived and she did seem nice and calm about it all and like me, just wants to get the op over with and start recovering.
Wednesday the 30th was also the day of my pre-op and Will Hellier is my surgeon which I was very happy about, not only have I known him over the years as my ENT consultant, but he is a very talented man and has carried out many CI operations - if you Google him you can see what an amazing career he has had so far. He also has nice steady hands :-)))
There were a few things discussed that left me feeling pretty down after Wednesdays visit - first of all that I would be in hospital until Thursday rather than Weds as first told, secondly that our holiday to the Lakes should be cancelled ......was hoping it was going to be okay to still head up there and recuperate, but Mr Hellier really didn't recommend it and then thirdly, due to the risk of infection, I am to try not to touch Dylan, my dog, as much as possible when I first come home. I think that is going to be near impossible on his part and mine.
But....as people keep saying and I keep reminding myself, all for good reason.
So - big day tomorrow and right now, I am not feeling too nervous. We have had a pretty busy week-end and loads of people have all been very lovely and wished me well.
Mike is cooking a yummy dinner for me tonight which I am looking forward to loads before my diet of hospital food starts!
I've been told to do absolutely nothing for 2 weeks and then try a few things gradually so will be back to update how it all went as soon as I am up and about again. :-)
But.......as tomorrow is the day I go in to hospital for my op on Tuesday, I thought it was about time I did.
So, about a month ago I was given a provisional date of the 6th of July, which is a date very familiar to me, it is our wedding anniversary. But nothing was definite, or at least until all the paperwork came through 2 weeks ago confirming the date and advising that I would be going in to hospital the day before....so all very romantic - hospital food for me and dinner for two for Mike and the dog!
But it is all very exciting if a bit scary!
Since our last appointment as a group, myself, Paul and Kim have been keeping in touch and updating each other of our progress. Paul was given a date of 30th June but Kim was still yet to hear....and then a week ago Friday she was told a slot had come up at the QA for her for the 2nd July, so the 3 of us are all being implanted within a week, but all at different hospitals and with different surgeons, Paul was at the Nuffield and I am at Southampton General.
Have had a couple of updates from Paul and he is recovering well and has had his compression bandage removed which he said felt lovely.....he has been feeling very tired though.
Kim, I am waiting to hear, but I did go and visit her at the QA on Thursday when she arrived and she did seem nice and calm about it all and like me, just wants to get the op over with and start recovering.
Wednesday the 30th was also the day of my pre-op and Will Hellier is my surgeon which I was very happy about, not only have I known him over the years as my ENT consultant, but he is a very talented man and has carried out many CI operations - if you Google him you can see what an amazing career he has had so far. He also has nice steady hands :-)))
There were a few things discussed that left me feeling pretty down after Wednesdays visit - first of all that I would be in hospital until Thursday rather than Weds as first told, secondly that our holiday to the Lakes should be cancelled ......was hoping it was going to be okay to still head up there and recuperate, but Mr Hellier really didn't recommend it and then thirdly, due to the risk of infection, I am to try not to touch Dylan, my dog, as much as possible when I first come home. I think that is going to be near impossible on his part and mine.
But....as people keep saying and I keep reminding myself, all for good reason.
So - big day tomorrow and right now, I am not feeling too nervous. We have had a pretty busy week-end and loads of people have all been very lovely and wished me well.
Mike is cooking a yummy dinner for me tonight which I am looking forward to loads before my diet of hospital food starts!
I've been told to do absolutely nothing for 2 weeks and then try a few things gradually so will be back to update how it all went as soon as I am up and about again. :-)
Wednesday, 12 May 2010
C I Surgery Video
One thing that I found really really interesting once I found the courage to watch it, was a video on YouTube that shows the surgery I will be going through when I have my implant operation.
So, for anyone who is curious and not too squeamish, here is the link:
http://www.tampabayhearing.com/VideoCochlearImplant.aspx
I promise it actually isn't too bad to watch and is very informative and you get to see how delicate yet major this operation is.
So, for anyone who is curious and not too squeamish, here is the link:
http://www.tampabayhearing.com/VideoCochlearImplant.aspx
I promise it actually isn't too bad to watch and is very informative and you get to see how delicate yet major this operation is.
Friday, 7 May 2010
Right Back To The Very Start
So, this is my very first post on my blog.
I have never created one before but thought that now I have a big YES to have a cochlear implant I would keep a record of the very exciting journey I am about to begin.
Up to this point I have been keeping a diary from the day that I had my first assessment appointment and so I have decided to copy this in to my blog and backdate it to earlier in the year.
The reason I have decided to start this is because on going through my assessment, I have had lots of questions and wanted to know of other peoples C I experiences, and by reading other C I user's blogs, it has helped me a lot with making certain decisions along the way. By keeping my own blog, not only will it be somewhere to keep track of everything as it happens, and let my friends and family keep up with it all, but perhaps I may be able to help somebody in the future with a decision along part of their own C I journey.
Happy reading and lets go back to February of this year:
Saturday 20th Feb 2010
A bit concerned about finding the South of England Cochlear Implant Centre (SOECIC) building on Tuesday due to the vast number of buildings on the university campus where it is located, so Michael (my hubby) drove Dylan (my dog) and I there so we could look at parking and find building number 19 - it was actually not too complicated at all.
Lots of construction work going on and parking could be fun once the uni is open, but will be leaving at 9am to get there and park in plenty of time on the day - roll on Tuesday!
Sounds stupid, but was good to show Dylan where I will be going for all of this...Michael will obviously be spending a lot of time there with me too.
Tuesday 23rd Feb 2010
First appointment today for the whole assessment period. Picked up my mother-in-law (Jan) to come with me as Michael couldn't make it due to my appointment day being changed last minute and my parents are away in Cornwall. We set off at 9am as planned and typically got there really early and parked without problem as there is a coned off parking area for the SOECIC.
We went in and funnily enough we were the first people for the 10am appointment. Gradually others turned up and we got chatting to one guy, Paul and it turned out it was his first appointment too and would be in my introduction group, he lived locally as well.
Four of us were called for by Nikki, the hearing therapist and as well as myself there was also a much older lady, Editha and then a guy called James who I would say is around 10 years younger than me.
Nikki took us to another room and in the corner sat a lovely lady called Fiona and she was our typist, which was great as everything that was said would come up on a big screen at the front of the room so we could keep up with everything.
We were given an overview of what to expect throughout our assessment, who we would meet, info about the staff and some history about the SOECIC.
I was already feeling a little emotional to finally be there, so when Nikki started talking about expectations, I got a bit watery eyed, which she spotted - yikes!!
After this, she passed around the ear processors and the internal implant pieces from the four different manufacturers they use - they are from Australia, U.S.A, Austria and France.
I had taken a look at some websites before today and liked the look of the Cochlear Nucleus the best and when I was able to see it and feel it for real it confirmed my opinion.
I have been calling it my iEar as it is in white (optional) and it is the smallest and seemingly the most advanced of them all.
Of course though if this does all go ahead then I will speak with my surgeon in case there is any reason why I should not have this make of implant.
Then we had a chance to ask questions and this was a really interesting part. We found out that in an ideal scenario it would on average be 4-5 months from the assessment start through to the operation.
The whole meeting was a very, very beneficial start and I came away feeling very positive.
Jan said her head was buzzing with all of the information.
Some of the group went on for further appointments, but that was it for me for the day and I return on Thursday for 2 more. Hopefully the same people in the group will meet up again throughout the process.
Thursday 25th Feb 2010
A day of lots of tests and lots of questions. Michael was able to come with me this time and it was good for him to see where it is all happening, meet others being assessed and of course, meet the lovely members of the team too.
My first appointment was for hearing tests and after doing the usual kind of test I would have at the ENT, I then had to do further tests with speakers sending noises in to the room. Michael was there for this and was given a pair of headphones to wear as the sounds would be too loud for him, but he could still heard everything through the headphones, whereas I hardly heard a thing, without headphones!!
After this I had to do some lipreading tests and this was really hardwork, it was a totally expressionless guy reading out all sorts of sentences and I had to repeat back what he had said if I could make any of it out. Some I could repeat whole sentences, others, the odd word and for some nothing at all. Then another 24 sentences were shown, this time with sound and I had to do the same thing again.
My results showed that I got 25% just lipreading and 29% with the sound so only a 4% increase and this shows how much I totally depend on lipreading.
I also had a test (pressure) on my middle ear and this showed as absolutely normal, so at this point, Sarah the audiologist said that she felt that a C I would really benefit me - I was very good and didn't get watery eyes when she said that :-)
After all of the hearing tests, I then had a communications assessment appointment with Nikki and another lady who I think was called Claire. This is where loads of questions were asked about my hearing, what I had to do to cope, my experiences and the support I have had through my life with school, college, work and of course family and friends. I was also asked if I had noticed any difference in my speech since my hearing had deteriorated as much as it has.
Michael was also asked a lot of questions too.
Other things I was asked were things like how do I make appointments, wake myself up in the morning etc., what did I expect from getting a C I. What do I miss and what have I stopped doing - I mentioned concerts and also feeling very little confidence in social settings, especially when the people are unknown to me.
It was all good though and again, I left feeling very positive as Nikki also said the same as Sarah earlier and that it looked like I was going to be a suitable candidate for a C I.
I felt totally worn out after all this and went home and had a snooze and cuddle with the dog :-)
Monday 1st Mar 2010
Today was my meeting with Mr Hellier, who I know from my appointments at the ENT. It was a lot more questions, this time on the medical side of things, about my history, when I have tried aids etc. I was also given a lot of info about the op and what to expect. It is a 3 hour operation and I would probably have a one night stay and then be signed off work for at least 2 weeks...I shouldn't be in too much pain but I will be given anti-biotics and won't be allowed to drive for a little while. I was also told I wouldn't be able to run for at least 2 weeks, perhaps longer.....gulp!!! but to be expected I suppose as it is head surgery I need to recover from.
Mr Hellier also went through all of the risks associated with the operation, all very slight risks but they have to let you know, these include loss of balance, loss of taste and numbness on the side of your face, although if these do occur they do tend to go over a short amount of time.
Although everything is still very positive following this appointment, Mr Hellier did keep saying 'we need to say if you have the operation and not when,
It is still early days yet, but Mr Hellier has confirmed my way of thinking that all is good, but I have to remember that this may turn out to not be the answer for me, and this could be their decision or mine.
Tuesday 9th March
I had my pheumococcal vaccine against meningitis today at my local doctors. It did not hurt at all, although my arm may get sore later or I may feel groggy or feverish.
I also had my next batch of appointments through the post today so that is something to look forward to in a few weeks. This will be lots more hearing tests, a device info meeting and also a user group meeting where we meet other C I users who will talk to us about their experiences.
Wednesday 10th March
Ouch!! my arm is hurting so much and it feels like it has been kicked by a horse. It hurts where the injection went in, but also my entire upper arm, on to my shoulder and my armpit - it has a red ring mark around my arm too.
I have also felt tired today and generally feeling bleurgh and this led to me feeling pretty down as I left work and feeling sorry for myself, the first time since the assessment started....but I think I have to put this in to contrast of a very hectic week-end just gone where I ran lots, and I just don't like going from being so full of energy to feeling pathetic.
I came home to some paperwork and questionnaires from Hampshire C C and I guess this links in with the funding application, so I have completed everything and will be sending it off first thing in the morning - can't have any delay there!
Wednesday 24th March
Back to the SOECIC today for 2 appointments, both were hearing tests. The first session was a repeat of all those I had before to make sure there is a consistency, so it was the usual beeps test with the headphones on, then without and then with aids in one at a time. The results came back as before.
Then it was the lipreading video again with Mr Personality :-) Michael had to turn himself away this time so he wouldn't get the giggles! Results for this one were also very similar to last time 27% compared to 28%. After this one it was another speech test where some sentences are spoken out of a big speaker and I was to repeat them back, but for this one I couldn't even hear any sound, let alone what anyone was saying.
From here we then moved to another room for further tests and this was the one where I could just sit back and did not have to do anything, no buttons to press or words to repeat - lovely.
I did however have to have 3 wires stuck on my head and 2 in my ears! I must have looked quite a picture. This was a long test and they pick up the electricity of sound recognition in my brain (apparantly there is one in there ;-)). Nicky the audiologist was very lovely and patient and while she was preparing my skin for the wire pads to stick on, she said it is just like having a facial! I just had to sit back, close my eyes and let the machines do their thing. Nicky also said to me the results showed that a C I is looking to be suitable for me - fingers crossed.
Friday 26th March
A very, very good day today :-) It was really informative and I felt like I learnt a lot. Today I had Michael and my Mum with me.
The device meeting was first of all and this was a group session with Roberta - who like all of the staff at the SOECIC was very lovely and very easy to listen to and understand which was hugely assisted again by the speedy typing of Fiona to give us captions at the front of the room - a godsend!
Paul and James were in the group again, so it was good to see them, but there was no Editha, but another girl called Kim.
Roberta gave us a lot of information about each device and she passed every one around, the internal and external parts so we could have a feel and try them on if we wanted to. She was brilliant and answered all of our questions.
I am still very set on the Cochlear Nucleus one - the iEar !! It's proper name is the the CP810, sounds like something from Star Wars, which my godson will definitely approve of!
If my MRI scan goes well, I would then have my one-to-one with Nicky which would be my expectations meeting and choosing the device, so I will get to have a play around with them again which is good as although we could today, I was conscious of other people in the group waiting to look at them.
Afterwards, we had the user group meeting and I had really been looking forward to this one most. I had a long list of questions all ready, which Fiona laughed at and said she wanted to be out by 5 :-)
So, 2 ladies came in with Nikki, Sue and Lesley - Sue also had her husband with her which was great for Michael as it gave him chance to hear from his side of things (I got watery eyes when I wrote that the first time as I have been so lucky to have all of the love and support from him and everybody else).
Anyway.......Sue's background was that her deafness occurred suddenly 2.5 years ago after a fall - her implant was fitted 6 months ago. Lesley was quite similar to me really in that she started to lose her hearing around 20 years ago and it gradually got worse and worse, she admitted she had totally lost her confidence so it was great to see her sat there today talking to a group of us. Lesley had her implant 2.5 years ago.
So, after hearing their history, Nikki prompted a few questions and then we all started to ask things too. I won't list them all, but the main thing is they have both had amazing and positive experiences and do not regret having the implants at all. Lesley is obviously further along and she feels she has about 90% of her hearing back!!! 90% is amazing and Nikki reminded us all that we are all different and that the average is around 30%.
they are both so happy with their implants and they now feel they are part of them - they told us a few funny things happening like getting tangled up in the washing line, or having a 2p piece stick to the magnet when taken off at the hairdressers and not being able to understand why it wouldn't go back on. I came away feeling very, very positive and was so impressed that neither were using the captioning screen to keep up with the conversation, they were talking to and listening to us like 'normal'.
Myself, Paul, James and Kim swapped email addresses so we can all keep in touch along our own journeys. A great day!
Monday 12th April
MRI scan today - wasn't too bad. There was quite a bit of waiting around before going in to the scanner and so Michael and I played i-spy in a room that virtually had nothing in it, it really didn't pass the time that quickly! hehe!
Anyway, finally went through had to remove some bits and pieces...jewelery etc. Michael was coming in to the room with me and so he had to do the same.
So, in to the scanner I go and I was told it would take around 30 mins, which came as a bit of a surprise as both Kim & Paul had both said it takes 5 mins (turns out this is for the CT scan).
A frame was put over my face which felt odd and very close and then I was moved in to the tube. The frame had a mirror on it and I could see Michael, it looked like he was sat behind me although he was at my feet end. I was worried that being able to see him that it might give me the giggles but once I was in there it all felt very real and serious. I had to keep so still I couldn't even smile or anything. It felt like ages and even with some earphones on it was a very loud knocking noise and as it got faster it made me feel a bit weird.
when it was finished we could go, so now I just have to wait for the results to get sent to the SOECIC and then hopefully have my one-to-one appointment with Nikki. Pathetically, I felt really tired after my scan which I was not expecting at all.
Tuesday 13th April
I heard from Paul today as he had his one-to-one appointment with Nikki and had to choose his device ready for if he gets offered the implant. He has changed his mind about the Nucleus as he has been told about some glitches and has now decided on Advanced Bionics. This was disappointing to hear but I spoke to somebody who I have recently found at work who has been implanted and is about to be 'switched on' and he was told the same but still went ahead and chose Nucleus - I am keeping in touch with him (also called Paul) and have my fingers crossed for him and his switch on and that he helps me stick with my decision too.
Thursday 29th April
Back to the SOECIC today for the final part of my assessment. This is the expectations meeting with Nikki and choosing my device ready for if I get offered the implant.
Before we went in to the room with Nikki, I was given a questionnaire to complete and this had a lot of questions on it such as 'if I have an implant would I expect to understand the difference between a man and woman's voice', 'would I expect things to be loud or uncomfortable'....just lots of questions really about what I have in my head that a CI would give me. Nikki then went through all of these answers with me and said there were no right or wrong answers but it was to determine I am being realistic about the end result. I think with a couple I had a little less expectation than is normal eg. 'comfort of noise level'.
After this I then had to sit at the PC and answer a load more questions, grading them between 1-100 on what I would expect from the CI, these questions as an example were things like 'being able to understand speech one-to-one', being able to use the phone', talking in a group'. Again, no right or wrong answers and I found this one a little more difficult as on answering I wanted to keep realistic but of course, nobody knows what the success level would be for me personally.
Then it was time to let Nikki know which make and colour of CI I had chosen. I immediately chose the Nucleus one as always intended and this was based not only on size, look and comfort but also the success that Paul (from work) has had with his so far since switch on.
http://www.cochlear.com/au/nucleus-cochlear-implants/nucleus5
When I told Nikki my choice, there was no mention of any problems with it so hopefully any glitches in the past have been sorted out.
I went for the device in black. Before the meeting I was undecided between black or charcoal, but when I saw the charcoal cover in front of me I didn't like it and it was a lot paler than it looks in the book. I was then asked to chose which ear, and I chose my left. This is because I am left handed so will hopefully make it easier to put on, take off etc. but also when I walk or run beside people, I feel better having them on my left handside, this is just a physcological thing now but is from before when my hearing was slightly better in my left ear. Also, Nikki mentioned it is a good choice of ear for when I am in the car driving....I can't even begin to imagine being able to have conversations with people in the car while I am driving!
So - that is it now, just need to wait for the team to have their decision meeting and decide if they are going to offer me the implant or not. Nikki did not know when this would be.
As always, I came away feeling positive but realistic that this could still not happen, and if i'm honest, if it is a 'no', I will be very, very disappointed.
Friday 30th April
At about 2pm today, an email popped in to my inbox from Nikki - so, deep breath and I opened it and was SO pleased to first of all see the words 'good news'! I have been offered the implant!!!!
I immediately burst in to tears at the relief of it all and the fact that this was the start of another new road to my implant that is definitely going to happen :-))))))
Absolutely brilliant timing as well as Michael had popped home on his way back from work so not only was he the first person I could tell, but also I could do it face to face, and of course blubbed some more.
I then asked him to phone my Mum & Dad, as they had to be the next people to know before I went and shouted it to the world and when he got through, it was my Mum and he said 'Mel has got an email to read out to you'. I wasn't expecting him to do that and so I tried to read the email and was blubbing again and found it really hard to get the words out - what am I like!!
Then I asked him to phone Jan as well and she is really excited for me too.
Phew!! what an emotional few hours.....lots of texting and messages from work and everyone is so happy and pleased for me :-)))
Wow!! this is really going to happen now - what a start to the bank holiday week-end!
Nikki has said the op could be mid June, but with going standby it could be sooner, or of course later..
I have never created one before but thought that now I have a big YES to have a cochlear implant I would keep a record of the very exciting journey I am about to begin.
Up to this point I have been keeping a diary from the day that I had my first assessment appointment and so I have decided to copy this in to my blog and backdate it to earlier in the year.
The reason I have decided to start this is because on going through my assessment, I have had lots of questions and wanted to know of other peoples C I experiences, and by reading other C I user's blogs, it has helped me a lot with making certain decisions along the way. By keeping my own blog, not only will it be somewhere to keep track of everything as it happens, and let my friends and family keep up with it all, but perhaps I may be able to help somebody in the future with a decision along part of their own C I journey.
Happy reading and lets go back to February of this year:
Saturday 20th Feb 2010
A bit concerned about finding the South of England Cochlear Implant Centre (SOECIC) building on Tuesday due to the vast number of buildings on the university campus where it is located, so Michael (my hubby) drove Dylan (my dog) and I there so we could look at parking and find building number 19 - it was actually not too complicated at all.
Lots of construction work going on and parking could be fun once the uni is open, but will be leaving at 9am to get there and park in plenty of time on the day - roll on Tuesday!
Sounds stupid, but was good to show Dylan where I will be going for all of this...Michael will obviously be spending a lot of time there with me too.
Tuesday 23rd Feb 2010
First appointment today for the whole assessment period. Picked up my mother-in-law (Jan) to come with me as Michael couldn't make it due to my appointment day being changed last minute and my parents are away in Cornwall. We set off at 9am as planned and typically got there really early and parked without problem as there is a coned off parking area for the SOECIC.
We went in and funnily enough we were the first people for the 10am appointment. Gradually others turned up and we got chatting to one guy, Paul and it turned out it was his first appointment too and would be in my introduction group, he lived locally as well.
Four of us were called for by Nikki, the hearing therapist and as well as myself there was also a much older lady, Editha and then a guy called James who I would say is around 10 years younger than me.
Nikki took us to another room and in the corner sat a lovely lady called Fiona and she was our typist, which was great as everything that was said would come up on a big screen at the front of the room so we could keep up with everything.
We were given an overview of what to expect throughout our assessment, who we would meet, info about the staff and some history about the SOECIC.
I was already feeling a little emotional to finally be there, so when Nikki started talking about expectations, I got a bit watery eyed, which she spotted - yikes!!
After this, she passed around the ear processors and the internal implant pieces from the four different manufacturers they use - they are from Australia, U.S.A, Austria and France.
I had taken a look at some websites before today and liked the look of the Cochlear Nucleus the best and when I was able to see it and feel it for real it confirmed my opinion.
I have been calling it my iEar as it is in white (optional) and it is the smallest and seemingly the most advanced of them all.
Of course though if this does all go ahead then I will speak with my surgeon in case there is any reason why I should not have this make of implant.
Then we had a chance to ask questions and this was a really interesting part. We found out that in an ideal scenario it would on average be 4-5 months from the assessment start through to the operation.
The whole meeting was a very, very beneficial start and I came away feeling very positive.
Jan said her head was buzzing with all of the information.
Some of the group went on for further appointments, but that was it for me for the day and I return on Thursday for 2 more. Hopefully the same people in the group will meet up again throughout the process.
Thursday 25th Feb 2010
A day of lots of tests and lots of questions. Michael was able to come with me this time and it was good for him to see where it is all happening, meet others being assessed and of course, meet the lovely members of the team too.
My first appointment was for hearing tests and after doing the usual kind of test I would have at the ENT, I then had to do further tests with speakers sending noises in to the room. Michael was there for this and was given a pair of headphones to wear as the sounds would be too loud for him, but he could still heard everything through the headphones, whereas I hardly heard a thing, without headphones!!
After this I had to do some lipreading tests and this was really hardwork, it was a totally expressionless guy reading out all sorts of sentences and I had to repeat back what he had said if I could make any of it out. Some I could repeat whole sentences, others, the odd word and for some nothing at all. Then another 24 sentences were shown, this time with sound and I had to do the same thing again.
My results showed that I got 25% just lipreading and 29% with the sound so only a 4% increase and this shows how much I totally depend on lipreading.
I also had a test (pressure) on my middle ear and this showed as absolutely normal, so at this point, Sarah the audiologist said that she felt that a C I would really benefit me - I was very good and didn't get watery eyes when she said that :-)
After all of the hearing tests, I then had a communications assessment appointment with Nikki and another lady who I think was called Claire. This is where loads of questions were asked about my hearing, what I had to do to cope, my experiences and the support I have had through my life with school, college, work and of course family and friends. I was also asked if I had noticed any difference in my speech since my hearing had deteriorated as much as it has.
Michael was also asked a lot of questions too.
Other things I was asked were things like how do I make appointments, wake myself up in the morning etc., what did I expect from getting a C I. What do I miss and what have I stopped doing - I mentioned concerts and also feeling very little confidence in social settings, especially when the people are unknown to me.
It was all good though and again, I left feeling very positive as Nikki also said the same as Sarah earlier and that it looked like I was going to be a suitable candidate for a C I.
I felt totally worn out after all this and went home and had a snooze and cuddle with the dog :-)
Monday 1st Mar 2010
Today was my meeting with Mr Hellier, who I know from my appointments at the ENT. It was a lot more questions, this time on the medical side of things, about my history, when I have tried aids etc. I was also given a lot of info about the op and what to expect. It is a 3 hour operation and I would probably have a one night stay and then be signed off work for at least 2 weeks...I shouldn't be in too much pain but I will be given anti-biotics and won't be allowed to drive for a little while. I was also told I wouldn't be able to run for at least 2 weeks, perhaps longer.....gulp!!! but to be expected I suppose as it is head surgery I need to recover from.
Mr Hellier also went through all of the risks associated with the operation, all very slight risks but they have to let you know, these include loss of balance, loss of taste and numbness on the side of your face, although if these do occur they do tend to go over a short amount of time.
Although everything is still very positive following this appointment, Mr Hellier did keep saying 'we need to say if you have the operation and not when,
It is still early days yet, but Mr Hellier has confirmed my way of thinking that all is good, but I have to remember that this may turn out to not be the answer for me, and this could be their decision or mine.
Tuesday 9th March
I had my pheumococcal vaccine against meningitis today at my local doctors. It did not hurt at all, although my arm may get sore later or I may feel groggy or feverish.
I also had my next batch of appointments through the post today so that is something to look forward to in a few weeks. This will be lots more hearing tests, a device info meeting and also a user group meeting where we meet other C I users who will talk to us about their experiences.
Wednesday 10th March
Ouch!! my arm is hurting so much and it feels like it has been kicked by a horse. It hurts where the injection went in, but also my entire upper arm, on to my shoulder and my armpit - it has a red ring mark around my arm too.
I have also felt tired today and generally feeling bleurgh and this led to me feeling pretty down as I left work and feeling sorry for myself, the first time since the assessment started....but I think I have to put this in to contrast of a very hectic week-end just gone where I ran lots, and I just don't like going from being so full of energy to feeling pathetic.
I came home to some paperwork and questionnaires from Hampshire C C and I guess this links in with the funding application, so I have completed everything and will be sending it off first thing in the morning - can't have any delay there!
Wednesday 24th March
Back to the SOECIC today for 2 appointments, both were hearing tests. The first session was a repeat of all those I had before to make sure there is a consistency, so it was the usual beeps test with the headphones on, then without and then with aids in one at a time. The results came back as before.
Then it was the lipreading video again with Mr Personality :-) Michael had to turn himself away this time so he wouldn't get the giggles! Results for this one were also very similar to last time 27% compared to 28%. After this one it was another speech test where some sentences are spoken out of a big speaker and I was to repeat them back, but for this one I couldn't even hear any sound, let alone what anyone was saying.
From here we then moved to another room for further tests and this was the one where I could just sit back and did not have to do anything, no buttons to press or words to repeat - lovely.
I did however have to have 3 wires stuck on my head and 2 in my ears! I must have looked quite a picture. This was a long test and they pick up the electricity of sound recognition in my brain (apparantly there is one in there ;-)). Nicky the audiologist was very lovely and patient and while she was preparing my skin for the wire pads to stick on, she said it is just like having a facial! I just had to sit back, close my eyes and let the machines do their thing. Nicky also said to me the results showed that a C I is looking to be suitable for me - fingers crossed.
Friday 26th March
A very, very good day today :-) It was really informative and I felt like I learnt a lot. Today I had Michael and my Mum with me.
The device meeting was first of all and this was a group session with Roberta - who like all of the staff at the SOECIC was very lovely and very easy to listen to and understand which was hugely assisted again by the speedy typing of Fiona to give us captions at the front of the room - a godsend!
Paul and James were in the group again, so it was good to see them, but there was no Editha, but another girl called Kim.
Roberta gave us a lot of information about each device and she passed every one around, the internal and external parts so we could have a feel and try them on if we wanted to. She was brilliant and answered all of our questions.
I am still very set on the Cochlear Nucleus one - the iEar !! It's proper name is the the CP810, sounds like something from Star Wars, which my godson will definitely approve of!
If my MRI scan goes well, I would then have my one-to-one with Nicky which would be my expectations meeting and choosing the device, so I will get to have a play around with them again which is good as although we could today, I was conscious of other people in the group waiting to look at them.
Afterwards, we had the user group meeting and I had really been looking forward to this one most. I had a long list of questions all ready, which Fiona laughed at and said she wanted to be out by 5 :-)
So, 2 ladies came in with Nikki, Sue and Lesley - Sue also had her husband with her which was great for Michael as it gave him chance to hear from his side of things (I got watery eyes when I wrote that the first time as I have been so lucky to have all of the love and support from him and everybody else).
Anyway.......Sue's background was that her deafness occurred suddenly 2.5 years ago after a fall - her implant was fitted 6 months ago. Lesley was quite similar to me really in that she started to lose her hearing around 20 years ago and it gradually got worse and worse, she admitted she had totally lost her confidence so it was great to see her sat there today talking to a group of us. Lesley had her implant 2.5 years ago.
So, after hearing their history, Nikki prompted a few questions and then we all started to ask things too. I won't list them all, but the main thing is they have both had amazing and positive experiences and do not regret having the implants at all. Lesley is obviously further along and she feels she has about 90% of her hearing back!!! 90% is amazing and Nikki reminded us all that we are all different and that the average is around 30%.
they are both so happy with their implants and they now feel they are part of them - they told us a few funny things happening like getting tangled up in the washing line, or having a 2p piece stick to the magnet when taken off at the hairdressers and not being able to understand why it wouldn't go back on. I came away feeling very, very positive and was so impressed that neither were using the captioning screen to keep up with the conversation, they were talking to and listening to us like 'normal'.
Myself, Paul, James and Kim swapped email addresses so we can all keep in touch along our own journeys. A great day!
Monday 12th April
MRI scan today - wasn't too bad. There was quite a bit of waiting around before going in to the scanner and so Michael and I played i-spy in a room that virtually had nothing in it, it really didn't pass the time that quickly! hehe!
Anyway, finally went through had to remove some bits and pieces...jewelery etc. Michael was coming in to the room with me and so he had to do the same.
So, in to the scanner I go and I was told it would take around 30 mins, which came as a bit of a surprise as both Kim & Paul had both said it takes 5 mins (turns out this is for the CT scan).
A frame was put over my face which felt odd and very close and then I was moved in to the tube. The frame had a mirror on it and I could see Michael, it looked like he was sat behind me although he was at my feet end. I was worried that being able to see him that it might give me the giggles but once I was in there it all felt very real and serious. I had to keep so still I couldn't even smile or anything. It felt like ages and even with some earphones on it was a very loud knocking noise and as it got faster it made me feel a bit weird.
when it was finished we could go, so now I just have to wait for the results to get sent to the SOECIC and then hopefully have my one-to-one appointment with Nikki. Pathetically, I felt really tired after my scan which I was not expecting at all.
Tuesday 13th April
I heard from Paul today as he had his one-to-one appointment with Nikki and had to choose his device ready for if he gets offered the implant. He has changed his mind about the Nucleus as he has been told about some glitches and has now decided on Advanced Bionics. This was disappointing to hear but I spoke to somebody who I have recently found at work who has been implanted and is about to be 'switched on' and he was told the same but still went ahead and chose Nucleus - I am keeping in touch with him (also called Paul) and have my fingers crossed for him and his switch on and that he helps me stick with my decision too.
Thursday 29th April
Back to the SOECIC today for the final part of my assessment. This is the expectations meeting with Nikki and choosing my device ready for if I get offered the implant.
Before we went in to the room with Nikki, I was given a questionnaire to complete and this had a lot of questions on it such as 'if I have an implant would I expect to understand the difference between a man and woman's voice', 'would I expect things to be loud or uncomfortable'....just lots of questions really about what I have in my head that a CI would give me. Nikki then went through all of these answers with me and said there were no right or wrong answers but it was to determine I am being realistic about the end result. I think with a couple I had a little less expectation than is normal eg. 'comfort of noise level'.
After this I then had to sit at the PC and answer a load more questions, grading them between 1-100 on what I would expect from the CI, these questions as an example were things like 'being able to understand speech one-to-one', being able to use the phone', talking in a group'. Again, no right or wrong answers and I found this one a little more difficult as on answering I wanted to keep realistic but of course, nobody knows what the success level would be for me personally.
Then it was time to let Nikki know which make and colour of CI I had chosen. I immediately chose the Nucleus one as always intended and this was based not only on size, look and comfort but also the success that Paul (from work) has had with his so far since switch on.
http://www.cochlear.com/au/nucleus-cochlear-implants/nucleus5
When I told Nikki my choice, there was no mention of any problems with it so hopefully any glitches in the past have been sorted out.
I went for the device in black. Before the meeting I was undecided between black or charcoal, but when I saw the charcoal cover in front of me I didn't like it and it was a lot paler than it looks in the book. I was then asked to chose which ear, and I chose my left. This is because I am left handed so will hopefully make it easier to put on, take off etc. but also when I walk or run beside people, I feel better having them on my left handside, this is just a physcological thing now but is from before when my hearing was slightly better in my left ear. Also, Nikki mentioned it is a good choice of ear for when I am in the car driving....I can't even begin to imagine being able to have conversations with people in the car while I am driving!
So - that is it now, just need to wait for the team to have their decision meeting and decide if they are going to offer me the implant or not. Nikki did not know when this would be.
As always, I came away feeling positive but realistic that this could still not happen, and if i'm honest, if it is a 'no', I will be very, very disappointed.
Friday 30th April
At about 2pm today, an email popped in to my inbox from Nikki - so, deep breath and I opened it and was SO pleased to first of all see the words 'good news'! I have been offered the implant!!!!
I immediately burst in to tears at the relief of it all and the fact that this was the start of another new road to my implant that is definitely going to happen :-))))))
Absolutely brilliant timing as well as Michael had popped home on his way back from work so not only was he the first person I could tell, but also I could do it face to face, and of course blubbed some more.
I then asked him to phone my Mum & Dad, as they had to be the next people to know before I went and shouted it to the world and when he got through, it was my Mum and he said 'Mel has got an email to read out to you'. I wasn't expecting him to do that and so I tried to read the email and was blubbing again and found it really hard to get the words out - what am I like!!
Then I asked him to phone Jan as well and she is really excited for me too.
Phew!! what an emotional few hours.....lots of texting and messages from work and everyone is so happy and pleased for me :-)))
Wow!! this is really going to happen now - what a start to the bank holiday week-end!
Nikki has said the op could be mid June, but with going standby it could be sooner, or of course later..
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