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Hello !! From a wet & damp Spain!!


Tracey_66

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Really pleased to have come across this forum, as I was looking for friendly advice.:)

I was born partially deaf because of German Measels, but in April 2016 my hearing suddenly went in my right ear, by November my hearing turned for the worse in my left ear. To the point I have something like 5-10% hearing at the moment.

I am currently going through the assessments for CI, I have already have had the MRI and CT scans and have just finished three auditory assessments this week the final one was the ABR. I am now waiting to hear from the next consultant as to what happens next!! I don´t think I´ll get a reply that quickly especially with Christmas on its way. More than likely in the New Year.:unsure::(.   From what I could find on the internet about my next consultant, it appears that he deals with more middle ear problems..........

SOooo, now waiting in limbo. :(.

 

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Tracey,

 

Welcome to the group.  I had progressive hearing loss as well and have been implanted for 1 year 8 months in my right ear and 1 year in my left ear.  I love my CIs!  Best of luck on your journey.

 

Mary Beth

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Thank you! Mary Beth!! Nice to know that someone else has have had the same problem. So glad that your CIs you just love!!

 

Tracey.

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Hi Tracey!

Welcome to the club ? I lost part of my hearing as a child from chicken pox and finally got an implant to survive at work. I was implanted October 18th and switched on November 11th ? It's been a journey unlike anything I've ever experienced! So many sounds!!!

The people on this forum are incredibly helpful and supportive - ask all the questions you need to. 

Best of luck on your journey! Keep us updated ?

*Megan

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Hi Tracey,

Nice to meet you. Wish you have a happy busy holiday season so your waiting is not so haunting. At some point of my life I have started thinking that everything is coming in our life at the right time despite our expectation and prognosis :)

I surprise to hear that Spain can be wet and dump. Always think about your country as a place that is full of sunlight, passion, and joy.

You are already on your CI journey... At the beginning of that. When it progresses it is more and more thrilling :) 

Good luck!

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Thank You to Cara Mia and Megan L!!  Nice too meet you both!!

I live in an area where I am surrounded by mountains , although nothing like those in America or Canada. Woke up this morning to a major leak in my bedroom, carpet soaked.......Flash floodings down on the coast. So could do with that famous Spanish sunshine to dry things through!!!

Tomorrow will have to have a look on the roof, not sure what I am going to find....:o

Fingers crossed I hope to progress closer to getting a CI. This year alone has been an unwelcomed distraction. Loss of work, and the creative side of me seemed to have disappeared. It would be sooo nice to get back into the swing of it all again and create some artwork.

Definitely will keep all on the forum updated. :)

 

Tracey

 

 

 

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Oh no! I'm so sorry to hear you got flooded Tracey. Your mountains still sound pretty, as I heard Spain is ? Would love to visit your country one day! 

Sending you best wishes and good luck moving forward with your CI, holiday, and everything else ?

I am a creative too! Art, fashion design, and photography are my loves.

Definitely keep us updated!

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Hi Tracey, welcome to forum. We live in same country but what you say we are something far. I watched on TV the weather are really bad arround Málaga last weekend.

 

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¡Hola! Valentin! Nice to meet you!. Thank you, so pleased that I found this forum!.

As for the bad weather that we have had, well, so glad that it stopped... I live 40 minutes away from Malaga. Thankfully, the weather seem to be better today, at least the weather forecast looks a lot drier for the rest of the week....

Regards

Tracey

Malaga.

 

 

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Hi and welcome! I have had one implant for one year now! I felt much the way you do now before implantation. I was depressed and couldn't hear well at all. Couldn't use the phone couldn't listen to music or radio shows. Had to rely on captions for tv. But all that has changed!! I can talk on the phone now I can listen to music again! So best of luck with your journey!! 

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Hi Kara!! Thank you!!   I know I will have to be patient, I´m not sure how much more of the assessments I am going to need. It seems I have been referred  to another ENT Consultant. So will have to wait and see in the New Year what is going on.

 

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The 3 Ps. Patience practice and perserverence. They will serve you well on this journey. ''Tis a long and bumpy ride!! 

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  • 1 month later...

Happy New Year!! Hope everyone had a good time over Christmas and New Years celebrations.

Well so far I have an appointment for the 24th January, but I´ve still not seen who the consultant/surgeon is, or what I will be getting, CI or BB. The appointment is for an HVV General, I have no idea what this is. If anyone knows please let me know!! 

 

 

 

 

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Hi Tracey!  I do not know what those letters stand for but good luck at your appointment!

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Happy New Year to you too Tracey! Good luck at your appointment. You'll have to fill us in on the details ? I'm curious too as to what HVV stands for! 

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Hello Tracey - from Croatia, ;)

Just a quick note, if I have understood you well - you are bilaterally hearing impaired to the extent that BB would not be an efficient solution unless just one ear is not involved.

If you had just single-sided-deafness, you might be able to use BB -but with 2 ears..., :huh:

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Happy New Year Ivana!!

You are right, I have recently become bilaterally impaired, ( in the last two years), but so far the audiologists are looking only at my left ear as that has some hearing  to use ( amazingly), they said that the right ear was not of interest.....

I would love to know, how on earth do an audiologist work out from an audiogram what would be the best option to go for !!!

 

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Sorry, Ivana, Just realised that I had missed a bit in the last post:blink:. What I meant was what would be the best option to go for CI or BB.

The Hospital that I go to, seem to do Medel CI and Vibrant Sound Bridge. Also Cochlear Americas CI only. I managed to find this out through searching the "nearest clinic" to where I live, on both Medel & Cochlear Americas website. The BB is an option in another province.

They seem to think it is a middle ear problem, although I´m not sure. My Mum had German Measles/ Rubella, when she was pregnant with me, which makes me think it is also an Sensorineural problems as well. So mixed? As for Otosclerosis, there is no known history myself or family. All very confusing. As for my audiogram and tests, they look like a bad school report!!!:D:lol:

If a stapedectomy is recommended I would be so disappointed :(; by this April, it would be two years of doctors/specialist appointments from the time I first saw a consultant who mentioned CI. 

At the moment I still have a few more appointments to come, maybe I´ll get to find out sooon!! :)

 

Edited by Tracey_66
missed information.
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Hi Tracey, 

I don't think I have commented on your post.  Welcome to the community!  I'm sure that, by now, you have already learned for yourself what a wonderful community this is. :-)

I was born deaf in my right ear (it's hereditary - goes back at least four generations), and noticed hearing loss in my left ear at the age of 12 or 13.  I was implanted in the right ear on January 7, 2015 (yeah - hard to believe it has already been two years since my first cochlear implant surgery).  It was amazing to be able to hear out of that ear for the very first time.  It soon became my dominant ear. Then, in June of last year, I had my left ear implanted.  What a blessing it is to be able to hear!  I'm hearing better than ever before.  I hope that you will experience a lot of WOW! moments in your journey.

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Hi Tracey, 

it can be a bit confusing. The best thing you can do which it looks like you are already doing is to educate yourself. Do a lot of research and ask a lot of questions. Please let us know how things are going

Adam

 

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  • 1 month later...

Hi everyone!!

 

Really am sorry not been in touch recently.

Just been so busy. Not just with work but also with hospital appointments.

To Megan L. I found out that the HVV General, was an abbreviation to the hospital in name and that it was just a recap appointment of things so far.

Sooo, after more appointments some missed either to the consultant or the post!! I have had an appointment slip which came two days after when I should have gone!!!. Since then have received an WhatsApp appointment for today.....Great. Get there, and it is the first time that a really good friend,neighbour of mine and I, actually got  to see  the implant and processor. Guess what It is Med-el!!! I just had no idea how small they both were. My new consultant, was very keen that I should have the processor colour near to my natural hair colour ( at this moment going grey!!).

As I have had an MRI scan in 2015, she now thinks that I should have another one, just in case there has been changes since the last one and also if it showed any changes to  the bone structure, then it would mean no cochlear implant.

Later this afternoon, I then had to go for another hearing appointment this time with my hearing aids which I´ve not worn in the last two years, they are of no help what´s so ever. The idea was to try and get them cleaned up and reprogrammed for my left ear which has v. little hearing left.

So in her mind ( the consultant) thought that it would be good alongside the cochlear implant which would be for my right ear......Except when at the hearing aid appointment, the specialist there, really couldn't do much to the hearing aids which are of 8yrs for one and 6yrs for another..... He could only recommend that I needed the most powerful one to have some sort of hearing function and at a price of 1,400 euros, that is a lot of money. He did add that it would be best to trial before buying for 90 days, and from the audiogram he did think that with the hearing aid that he had in mind, it just might not work, However, he has to be seen to be trying to get a result .

Which is not good news for the consultant, as she was reluctant for me to have the cochlear implant surgery, without some added (temporary) help hearing wise. Interestingly, she mentions that (if) with a hearing aid in left ear , after two years with  the implant, the hearing aid would become obsolete and that just with the one implant,  have really good hearing......

So that is how far I am at the moment. I have an appointment for the 10th of March, which would be a review of the comments from the hearing aid specialist, and then what to do next!!

.

 

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Thanks for the update! Here in the u.s they will test you without your hearing aids and with best aided condition. If they find a hearing aid that will work, usually they will opt for that over surgery. If you get no real benefit from hearing aids, they will move forward with the CI. 

Pin my case, it was bad enough that they told me after the soundbooth that hA's were not an option. 

Keep us updated

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Hi Tracey!

Good to hear from you! Hope you have been well ?

Sounds like you are moving along. Getting a more recent MRI is a good idea. I had one not too long before I got another scan for the CI - I wanted to be extra sure everything was good!

As for the hearing aids they are expensive ☹️ If you are getting a CI, maybe hold off on getting a new HA so the trial period isn't wasted. My audiologist suggested that to me as my current HA is 5 years old. I only wear the HA here and there, not all the time now ? 

Please do keep us updated on your progress! Sending you good luck for a successful visit on the 10th!

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Thank you all !!

What is scary is that as the hearing aids are old and are out of date, technology wise, they are not worth anything as part exchange even.. So basically they either end up in the drawer  gathering dust, or in the bin. What I don´t understand, why is there not some sort of recycling programme, at least they would be of use still.

Just read the report from the audiologist to the consultant , that they recommend a month (not 90 days) with a ultra power hearing aid....just to see if it would be of any benefit at all, even though that the hearing aid proposed would struggle to come anywhere near my hearing levels seen on the audiogram!!!. The audiologist does not have high hopes.... but then you just never know.

Come next appointment will have to see what the consultant thinks!!

 

 

 

 

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There are so many steps involved in this journey even before the surgery happens.  Sure hope you get a surgery date soon and can begin your CI experience.

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