My Pre Op !

I had my Pre Op appointment yesterday and I admit I was at first nervous - but I ended up becoming a positive experience.

My lovely daughter Marissa came with me for support and although we had a bit of a roller coaster journey on the bus from the journey ( we fell over going up the stairs on a Double Decker!!) he arrived to the centre very early .

I lost my pre op appointment letters- probably put them somewhere safe knowing me - so prior to my journey i made a phone call via text relay  - for those of you who don't know what is its a way deaf people can communicate via the phone without the need to listen in the UK. I have a piece of equipment called a text line which is a text phone - from this i type in a prefixed number 18001 and then add the phone number i need to call. This then rings up an operator who is based at a call centre who has a text phone and headset so they can speak on my behalf. Amazing eh? it changed my life having one - it can be lenghty at times and also cause problems to go via an automated message - my husband comes in very handy to help me when i struggle. I have enclosed a picture of my textlink 9100 below and also a link explaining text relayhttp://www.textrelay.org/ for those interested .

The CI centre were brilliant and reprinted all my forms and pre op notes for me which was there for me on arrival and a huge relief.  I was really early and they managed to fit me in for my first appointment which was very kind of them.

I was warmly welcomed by Nicki one of the centres hearing therapists who i have seen on my prior visits she began by asking how i was and how i was feeling - I replied i was feeling OK and very excited -  I think at this point i have gained alot of knowledge abt the implant and had now put my fears aside. She then set up a camrecorder on a cute tripod. It was explained to me that they needed to record me making sounds using my speech. The purpose of this is to have some sort of record of me before and after i am implanted. They then can see if there would be any improvement in my speech in a years time. Wow, what a clever idea ! 

I was at first given two paragraphs to read abt a St Bernard's dog! Once this task was completed I then was asked to make a series of noises! Here's what she asked me!

N: Now Lisa i want you to make a noise like you would when you are pushing a wardrobe a proper groan or grunt!

so you can imagine me trying to pretend  to groan and grunt as best as could - my daughter was in fits of laughter and trying not to look at me especially when i was asked to repeat it louder and louder! I must of sounded like a pig - grunting for its food!!! I nearly died ha ha!

The next exercise was to go ummmmmmmmmm like you would when a doctor would check your throat out!! and a really low groan was included too.

The hardest exercise was to imagine i was jumping of a Cliff and go from high to low pitch ! I did struggle with this but tried my best and was asked to repeat by going up and down and up again..

It sounded so bizarre doing this exercise but i look forward to the very next year after to see improvement - it will be very interesting for me to see again!

Nicki then kindly showed Marissa the implants and explained how they worked - whilst i completed a questionnaire about my speech - i found this helpful as it made her feel included and also will help her to understand about the operation i am abt to have.

I then told Nicki about this blog so maybe i will have another fan who will read this - but i wanted  to also thank Nicki for her help her patience and time - it takes alot of dedication to do the job she does and also has been a real support - i really believe that this has helped me to feel so calm abt the operation I am abt to have tmrw.- am i werid!?

My Pre Op appointment

Whilst waiting to see Mr Pringle ( my surgeon) I was talking to my interpreter abt how positive i was feeling and how lucky i was to have him do my operation, a lady interrupted and told me abt her son who is 14 months old he was deaf from birth,she and her husband too were pleased that they had the same surgeon as me. I really wish them well and admire her as she had only been learning sign language for 2 weeks and was really doing well, also its such a big operation for me and very brave that they have decided to implant their son - I know that they have made the correct decision and it will really

help the future of their child. Its becoming popular for children this young to be implanted in both ears now. I cannot comment much abt this as i don't know enough about children who are implanted but I do know something if i had the same opportunity I'm sure my parents would of grabbed it too!

I then proceeded to see Mr pringle and he asked me if i had any questions abt the operation, im usually a terrible worrier and tend to ask loads of questions!! but he was great - i was thinking of having my hair braided beforehand but he advised me that  he didn't recommend it and he wouldn't shave any more hair than needed - this put me at ease being in his care- hes such a lovely man and takes the time to explain things carefully as he can without the use of terminology which does make a difference.

I left feeling positive and today had all my work colleagues wishing me good luck- I've managed to pack my hospital bag - I'm all ready to go!- I shall be having my operation tomorrow afternoon so please say a prayer for me. i shall update you on my return and look forward to being back home as soon as I can.

I also want  to thank everyone for their support, kindness and for following me in my personal journey if you get time say a prayer for me - im truly blessed to have you in my life - Love Lisa xxx

Myths and Facts abt CIs

I was talking to an old deafie friend the other day and when i told her i was going to have my CI - she looked at me in horror and began with a list of worries  - much of this is lack of awareness and sadly being told in the deafie world so i hope the following helps:

*MYTH: A Cochlear implant will give you cancer  *Reality:   I know many C.I wearers and this is simply untrue - i have a friend who has had herimplant for nearly 20 years and is still just as healthy and doing well

*MYTH : Cochlear Implants fix or cure deafness *Reality  Cochlear Implants do not cure or fix deafness. They provide an improved perception of sound, but anybody with a Cochlear implant, no matter how much they benefit from it, will tell you that they are not "cured" or "fixed". When the speech processor is turned off, there is no sound.

*MYTH : The operation is brain surgery and the implant will go into the brain * Reality: The electrodes go into the Cochlea (Part of the inner Ear), not the brain. At no time is the brain uncovered, exposed, touched, or probed, the Neurelec implant I am having is embedded under the scalp not the skull. However if you you are having a ABI which is called Auditory Brain Stem implant this will be inserted close to the brain- these are usually for people who have vestibulocochlear nerve damage please look at link for further info as im not really sure how they work : http://en.wikipedia.org/wiki/Auditory_brainstem_implant

*MYTH: The cord for the Cochlear Implant comes out of  the neck * Reality: No cords come out of the neck, or any other part of the body. The internal portion of the Cochlear Implant is completely separate from the external part.

*MYTH: After someone gets a Cochlear Implant, they're immediately able to hear normally and talk on the phone. *Reality: Results are not straight away, and as mentioned above, vary from individuals. It takes time for the brain to learn to understand and process these new sounds, some of which may not have ever been heard before.

*MYTH: People with Cochlear Implants are only able to distinguish environmental noises, not comprehend speech. *Reality :This is dependent on a number of things. Some get little more than an improved awareness of environmental sound. Some are able to comprehend speech without lip-reading.The implant is usually designed for speech but there is an on going project at present at my CI centre in southampton to research how music can be intregated into the listening process.

*MYTH: Can someone who has an implant hear on the telephone?  *Reality:  Again this is down to individual for some this is not always possible - it depends on the varying degree of knowledge of sound prior to being implanted - some centres are providing training for this.

*MYTH: You can hear perfectly once implanted * Reality: For the most part, people report hearing a robotic sound or “Mickey Mouse” (if they’re lucky). It may take a month or two or three to start really understanding speech. People often have to engage in therapy. The audiologist will usually send “homework” home with the implantee. Remember, if you haven’t used that part of the brain in years, it can be a long process for you to adapt.

*MYTH: The internal piece erodes later in life. *Reality:The internal component is made with titanium, which does not corrode

*MYTH: I will be unable to do sports such as swimming with the implant? *Reality: You shall be able to swim - as the implant is internal -  your processor will have to be removed, however it is advised that if you are doing extreme sports that you are aware of the risk that it could result in head injury and damage the implant so most people tend to avoid this- if however you decide to do so a helmet maybe required in some sports -its always best to check with your centre for advice on this.


DISCLAIMER: many of these facts are as a result of what  i have asked - i have tried to answer these as carefully i can - however I would advise individuals to ask the centre you are abt to encounter the assessments and implant with for further information as i am no expert.

Learning to use speech

I was diagnosed deaf quite late, which explains why my acquisition of speech and learning was so behind, I had to catch up and with the help of my hearing aids.Wearing hearing aids wasn't always straight forward to begin with as i was very young and  disliked putting them in my ears so a teddy bear and fake hearing aids on him to show me how cool he was wearing them put me at ease - when i realised I could hear better and I then became confident putting them in.

A speech  therapist began visiting me at home before I attended Penhale preschool nursery which had a local unit for deaf children attached - (these were called PHU Partially hearing Units and specialist teachers were there to teach deaf children to use the Aural approach ( using speech)).  I did begin to catch up. My  mother- Margaret was the one behind my learning to acquire sounds and letters, she never gave up and always made sure i repeated sound to sound( still does now ha ha!). Various tools were used  - books, toys pictures and the balloon.

I can vividly remember holding a balloon up to my mouth in some of my therapy lessons at school and being told to feel the sounds vibrating through my hands and being rewarded for each noise i got correct . It was a very frustrating time in my life - but I thank my mother for her determination. I was lucky as i did have some residue hearing to work with and as my speech improved so did my interaction and i was then weaned and placed in a normal classroom within school with the hearing children on a full time basis.   

This was probably an old method used in the 80s and as far as im aware is not used today - one thing i learnt from this balloon technique was that it made my sounds very nasal and it wasnt until later in life i realsied sounds can from other parts of the body by tummy and use of breathing techniques..

Part 2 - The diagnosis to my deafness

As i moved each marble I also looked at the lady who was testing me in the other room through a window, my Mother quickly raised this - Mrs Stallard the lady, then quickly pulled the curtains. I then restarted the marble game again!  I remeber feelin insecure then, unaware of what was going on. She called my mother aside and told her the news. 'Lisa is showing a hearing loss of moderate to severe - shes quite bright actually as I can se she was watching my actions and copying in line with my movements. I knew she was deaf the minute I met her - she gave me an empty expression - which most deaf children do'.

The diagnosis of my deafness - part one

I've had some good news and recently recieved a email and letter for my operation date - but forgive me for not telling you the exact date yet, all I'm going to say is its in July - I don't want to jinx it ha ha! Im soo excited cant believe its finally happening at last!! 

Meanwhile I thought id tell you the story how i my hearing loss was diagnosed.

Today most baby's on average are tested at 6 weeks old - usually whilst they are feeding and tiny leads are attached to the head to look at brain patterns sounds make- this would be identified via a computer screen- I only know this as my daughter was tested from birth - she passed with flying colours! We didn't know if my hearing loss was genetic?!

In my case and 70s era we didn't have the technology for this - so it was identified by a health visitor in a milestones record card in which a series of simple tests were done on regular intervals- i think a majority of babies then had a rattle shaken by them as one test. I was one of those that simply wasn't picked up.

I do remember living in naval quarters - a maisonette on top floor - which had a landing and running up and down it screaming at the top of my voice because i could not hear my voice and i suppose it was my only was of expressing myself - i must of drove my parents insane!! - I never spoke then - only two words 'Orange' and 'Mummy'. My mother was quite concerned and on taking me to the doctors - was told I was simply 'Slow- shes an only child may grow out of it' . At this point my brother was born and I regularly went to pre school/nursery.

It was there that a vigilant nursery worker 'Marion'  who had hearing difficulties herself (she had a perforated ear drum from playing her trumpet!) started to notice something wasn't quite right and identified my deafness.

She called my mother aside when she collected me and asked her to observe the last game of the very next day. The next day she gave each child a  noisy toy eg drum, rattle stick xylophone - lined us up facing  the wall  - and asked us to use the toy to repeat the sound she made and turn around. On two accounts - i never responded and on the third attempt - i think my Mother must of showed signs of relief. She quickly made a doctor appointment who then referred me to a hearing assessment clinic.

I remember sitting down in a room with lady looking through a window and being  told to remove a marble of a solitaire board

 I remember this so well as the colour of the marbles intrigued me -  i wanted to keep them afterwards !!

continued part 2