Meningitis, cochlear implant

[vickylou36]

I lost my hearing to both ears through meningitis. i had a cochlear implant operation and it was switched on 3 weeks ago 13/06/14. I would like to hear other peoples experiences of hearing loss after meningitis also anybody who has a cochlear implant. how as it affected you.

[Tucker71]

Hi vickylou, hope ur feeling a bit better, I'm Claire and only came out of hospital 3 half weeks ago with bacterial meng, I too am totally deaf with tinnitus very loud 24/7 , I'll start of by saying I'm sorry I can't offer u no advice but I'm so eagerly searching for some answers myself and it looks like I mite be fitted with cochlear implants and ( guessing) and just wanted to no how much of an improvement it's been from total deafness? And do u no of any thing to help hear the TV as I'm stuck in doors all the time, it's the only thing I think would help me escape for a bit, as if I be honest I'm not coping well at all, I'm very very depressed.

I'm sorry I can't be of much help but I woul love to hear how ur getting on......much love Claire

[vickylou36 in reply to Tucker71]

Hi Claire,

I am sorry to hear about your situation but i promise things will get better. I am still suffering from the affter affects of the meningitis but the improvments from the early days in huge. When i first came out of hospital after the meningitis i spent hours in front of the tv i watched all the series of 24 and prison break in about 2 weeks lol, using subtitles which is anoying at first but after a while you get used to them all the family have them on now. I had my cochlear implant operation at the begining of may and was swithched on 6 weeks later. At first it sounded like everybody was on hellium but that settled quite quicky and iver the last 4 months changes are happening all the time i can even sometimes forget i am deaf because it sounds so normal to me now. It is still very hard to hear in noise but it is getting better everyday. There where times i would cry with frustration at my hearing loss and meningitis and wonder why it happened to me but this is not as often now. I do get deppresed but this is also less often, but this is normal you have been through an emotional roller coaster and it will take time and patience to get through, i have to keep reminding myself of this. I still struggle with my balance 7 months down the line and get tired very easily i also have trouble focusing my eyes when moving so am unable to drive, i also have not returned to work yet but am determined i will do. Have you been reffered to the cochlear implant centre they are very good and fast, my implant was fast tracked due to the damage to my cochlear i belive this is the norm with meningits. I live in Oldham so went to the Manchester implant centre and everybody who i met there where brilliant. Where are you from.? If you need any support i will help you any way i can, i am not sure how you private message on here but i will see if i can find out. Oh nearly forgot i have the cochlear nucleus 6 implant and i think it is an amazing piece of kit to go from totally deafvto the hearing world again is just amazing, it can be very tiring at first and lots of noises will anoy you but it does get better. I use a tv listener for watching tv but still have the subtitles on so i dont miss anything. Just remember it will get better. I hope all this helps. Xx

[vickylou36 in reply to vickylou36]

Also claire forgot to say, get in touch with your local social servces sensory team they mat be able to help with some equipment or at least let you try some, they have been very good with me. Have you also been intouch with meningitis now my dad got in touch with them for me and they where really good they came out to see me and explained a lot of things i didnt understand. X

[Tucker71 in reply to vickylou36]

Hi again Vicky, just got ed to ring sensory team, they can't help till I've had my ent appointment? God it seems no one wants to believe or help till they have got in in black and white that I'm deaf, also lady rang bac from menigitis helpline and she said the same, just a quick question I'd meningiis now( who ur dad rang) the same as the meningiis normal helpline? ....cheers

[vickylou36 in reply to Tucker71]

Am really sorry about sensory team i was in hospital 7 weeks so had my hearing tested while i was there. Im not sure who my dad contacted but if you look on meningitis now i know somewhere on there you can contact the person who works in your area dont understand why they couldnt help you because its not just about your hearing its about the meningitis to and thats what they are there for. Good luck it is hard but you will get there x

[Tucker71 in reply to vickylou36]

Hi vickylou, hope ur well, I just wanted to ask u a question, I went for hearing test and she said yes I need aids, I asked her would that mess up my chances of getting an cochlear implants, she didn't know, so what do you think? I'm of to the ent on the 17th and will ask them but I really hope it doesn't.

Thanx once again.

Claire

[vickylou36 in reply to Tucker71]

I belive you usually need to try hearing aids for 3 months to see if you get enough benefit from them. My case was different as i was not suitable for hearing aids as i am completely deaf and also the ossification, which is a boney growth in the cochlear was very bad so i was fast tracked. It was the ent consulatant who told me hearing aids wouldnt work for me. If you are suitable for a cochlear implant having hearing aids wont prevent you getting one its best to wait and see what ent say. Good luck let me know how you get on.

[Tucker71 in reply to vickylou36]

Arch thank you love. I'll let u no,cx

[vickylou36]

You are more than welcome i will make a note of your email and send you mine. The tv listener works with my cochlear implant but can also work with hearing aids on the t setting so if you get hearing aids a tv listener might work for you. I know that you can get them also with ear buds i use a neck loop think that just give you amplified sound so wouldnt have worked for me but if you speak to the sensory team at yourclocal social services they might be able to help with at least trying them to see if it works for you. All areas are different but in my area i got a smoke alarm and door bell from them which flash or i also have i vibrating pad under my pilliw so i know if the smoke alsrm goes off. I also borrowed a tv listener and a vibrating alarm clock but i need to purchase my own as my local social aervices dont supply them. They have left them with me to try for a few weeks to see if they are right for ne. They also left me a text phone as i cant use the telephone although i dont like using it it has come in handy when its a phonecall only i can make, a lot if companys etc wouldnt speak to my partner because things where in my bbc ame only. The text phone works by using an operater to type whatever is being said by the person you are speaking to. You really need to contact the sensory team. I would also contact your local PALS at your lical hospital see if they can assist in follow up appointments. I have had 2 upto now and also seen a nerologist, that said it woyldnt have happened without my family and my GP fighting my corner. It will get easier you just have to keep on fighting and take one day at a time. X

[Tucker71]

Hiya love, thanx again, I've bookmarked your messages so I can go back to them again and again, also to get ur ideas planted in my head! Eddie isn't realy as forthright as I was, he's very laid back so I have to push him to get things, not that he dosnt won't to help cause he really does, it's he dosnt like to bug people, but he's the one who will phone these people, I will let u no wat happens.

You mentioned you watched prison break, have you seen breaking bad? It's won awards and stuff, don't no if it's ur thing but I loved it, I watched it a while bac and was gutted wen it came to the end series, anyway I'm gonna get ed to ring social services sensory team now.

Thanx again, love Claire.