I am so scared please help.

[Kara of Canada]

I forgot! I have used the treadmill many times with no issues. I even wear winter hats, which some say you shouldn't. No issues. I hope for lots of snow this year and lots of nice cold weather! For some good winter adventures with my new dog!! Penny is her name! 

[Mitchell]

@Renachelw seems MED-EL liked your initial post, they quoted part of it on facebook to advertise the forums just a few minutes ago!

[hadron]

@Renachelw 419 Likes! You are a star.

https://www.facebook.com/story.php?story_fbid=10155625647124882&id=299269394881

[MED-EL Moderator]

On 9/11/2017 at 6:42 AM, Renachelw said:

Hello, thanks everyone for your kind replies

I am less than 15 days away from my surgery, and I really hope that life will be much better after switch on.

I used to be a really talkative person 7 years ago before I lost my hearing, but sadly nowadays I am too afraid to speak up. 

If all goes well, I might even challenge myself to a retail job (I always wanted to try but I'm afraid customers would get impatient talking to me.)

Is being implanted on one side good enough to hear conversations like a hearing person? What about TV and movies? Any single sided implant users here? 

I'm also looking forward to starting school next year (I stopped for 3 years, now i'm behind all my peers  )

Also, any tips on how different life would be, and what I can or cannot do?

I read somewhere that people get shocks on their implant while using a treadmill. Is this true?

I also really wanted to learn contact sports like Muay Thai or MMA all my life, but I read that I should not risk any head injury. Would like to ask if this is the end of my dreams? Lol.

Thanks again  

 

Hi again,

I'm glad to see you've been able to get some great support here from the HearPeers Community . It's also great to read about what you're looking forward to with improved hearing! I spoke to our Product Management team here at MED-EL HQ, and they don't see any increased risk for CI users when using treadmills. Electric shock may occur for normal-hearing people as well, for example when wearing plastic shoes and touching a non-grounded/unearthed metal object. For cochlear implant users, our audio processors have respective measurements included to prevent any damage from electric shock.

Regarding MMA, it is important to protect your implant from sources of direct impact. We recommend to avoid contact sports that might result in severe blows to the head or give continuous pressure on the implant, since this could damage the implant. There are many MED-EL CI recipients who do a variety of high-action sports, from fencing, to soccer, to diving, to motocross!  Where necessary, they use helmets, WaterWear, and wearing attachments to protect their internal implant and keep their audio processor safe and secured. When choosing a helmet to protect the implant site from any blows, make sure to choose one of high quality. It may need to be modified to meet your individual needs, but this should only be done by a professional. You can read some of the stories of other CI recipients who play sport over on the MED-EL Blog, and we also share some tips for playing sport with a CI .We always recommend to speak with your local MED-EL Representative for specific advice and support for contact sports.  Let me know if you need their contact details and I'll send them through. 

Hope this information helps!  Wishing you all the best for the exciting journey ahead and don't hesitate to continue to reach out with any questions.

Kind regards,

Leigh

HearPeers Support Team

[Renachelw]

Hi everyone. Oops, I thought I replied but seems like i did not haha.

Anyway my surgery got postponed till indefinitely. I am still very scared tho...I kind of cant accept the fact that I will have to live with something inside my head that I cant remove for the rest of my life. Kind of makes me feel..idk. Not whole anymore. 

Would like to ask how does the implant feel inside your head? Do you constantly feel like, there's something under your skin, or something heavy in your head?

I am not so concerned about the processor as it is removable. I am just afraid that I will be able to feel the device inside me and feel horrible and irritated that I cant remove it. Do you feel any sensation when the processor is not attached? Or does your scalp feel different, like harder or anything? 

Also, do CIs cause headaches? 

Lastly, I also do have more questions. I might go back to schooling next year in April or August. 

I didn't really do well for my 'A' levels, but I might still be able to get into a uni (of not my choice lol). The problem is, I haven't really decided what I want to do in life. 

I am afraid that due to my hearing loss, I wont be able to hold jobs that require talking on the phone, or face to face convo..

What courses do hard of hearing students normally take, and what jobs do they normally take on after that? 

Thank you  

 

 

 

 

[Mary Beth]

Hello again @Renachelw!

I have had my CIs for 2.5 years so far.  I do not feel the internal implants.  It does not feel like something is in my head.  I can feel part of them if I rub my hand on my scalp where they are located.  When I wash my hair, I do not even notice them.  My head feels completely normal whether the processors are on or off.  At first, I was aware of the magnet connection but just like wearing glasses before you know it you do not notice them at all.

 

My CIs do not cause headaches.

 

My CIs have made it soooo much easier to hear.  I can speak on any phone, Hear at meetings and in groups, etc.  So in that way, my implants have expanded my opportunities.

 

There are successful deaf and hard-of-hearing people in many, many different careers.  

Are you able to meet with any CI users nearby?

[Megan L.]

Hi @Renachelw!

Sorry to hear you are still scared.

I’ve had my implant for a year and don’t feel a thing. At this point I’m sure it’s become one with my head ? I can feel a slight bump when I touch that spot but nothing noticeable. I can also feel the magnet snap into place when I put the processor on. Also, I’ve never gotten any headaches from the CI.

Do whatever your passion is! Don’t let your hearing loss hold you back and don’t let it make you afraid. You can do whatever you want in any field with or without a CI!!!

I will add that my CI has drastically improved my life and made every day things easier for me. I have no regrets ? 

[stream2525]

I which hospital are you getting your Implant? Who is the surgeon? What processor will you have ? 

[Renachelw]

Thanks @Mary Beth and @Megan L., i feel more assured now. Hopefully I will be able to get used to it.

@stream2525, I'm from Singapore and will be doing my surgery here in a public hospital. I'm sorry but I cannot disclose the identity of my surgeon here.  

As for my processor, I am still unsure. Looking at Rondo as well as Cochlear's Kanso. 

I might eventually end up using Cochlear as it is the more popular option here. 

If I do, I am sooo going to miss this medel community here  Seems like Cochlear doesn't have such a wonderful forum where I may easily reach out for help. sigh. 

 

[stream2525]

Is your hearing in the profound range? 

[Mary Beth]

No matter which company you choose, you can stay active here.  We can’t help with processors that aren’t Med El but we can support you on your journey and help with aural rehab.  Wishing you the best.

[MED-EL Moderator]

5 hours ago, Renachelw said:

Thanks @Mary Beth and @Megan L., i feel more assured now. Hopefully I will be able to get used to it.

@stream2525, I'm from Singapore and will be doing my surgery here in a public hospital. I'm sorry but I cannot disclose the identity of my surgeon here.  

As for my processor, I am still unsure. Looking at Rondo as well as Cochlear's Kanso. 

I might eventually end up using Cochlear as it is the more popular option here. 

If I do, I am sooo going to miss this medel community here  Seems like Cochlear doesn't have such a wonderful forum where I may easily reach out for help. sigh. 

 

Hi @Renachelw, it's lovely to see you on HearPeers again! I can definitely understand this is a big decision-making time for you, and I'll try to help where possible. A lot of people find it helpful to talk specifically with others from the same country about their experiences. If you like, I can put you in contact with our MED-EL Representative in Singapore, Eros Lomboy, who will be able to offer you support and information. Eros may also be able to connect you with some other cochlear implant recipients in Singapore so that you can discuss their experiences in detail with them.

Additionally, we recently shared the story of Talia from Singapore who uses a MED-EL cochlear implant and plays music. There are also countless examples of people who get MED-EL hearing implants, and are able to return to work or take up studies because of improved hearing. For example you can read the experience of Scott and how his implant helped him in the workplace.

We recommend to stay in close contact with a hearing specialist when discussing what options could be best for you, and Eros can also connect you with a hearing specialist in your local area.

I will send you through Eros's contact details in a private message. Don't hesitate to continue reaching out with any additional questions or concerns!

Kind regards,

Leigh

HearPeers Support Team

[MED-EL Moderator]

Hi @Renachelw,

Just a little more information which may assist you ....

Regardless of which CI brand you are leaning towards going with, this blog post on important questions to ask your surgeon may be helpful for you: https://blog.medel.com/10-questions-you-shouldnt-miss-asking-your-cochlear-implant-surgeon/

Kind regards,

Leigh

HearPeers Support Team

[Renachelw]

Thanks everyone for your support

I am also wondering if there is such thing as overuse of CI? Like, will it be possible to lose hearing again because of overuse of the hearing nerve? 

For instance, if I were to use the CI to stream music directly to the processor, and I listen to music a lot, will it cause any harm in the long run? 

Also, yes @stream2525 my hearing is in the profound rage... actually it beyond profound lol. Hearing aids dont really help. I'm barely even on the graph haha. 

 

[Mary Beth]

I listen to music with my CIs all the time.  No problem.

[Renachelw]

@Mary Beth That's great to hear, seems like I was worried for nothing haha. Thanks

Anyway, I have registered myself with my local silent club as a volunteer, hope I'd be able to tutor some kids soon or help in any way I can  I can't Sign but I will still try my best haha. 

Hearing loss has made me a very withdrawn person, i'm trying to integrate myself back into society, and also get to know more local deaf people and how they cope. Also since I can speak like a normal person, I feel like I might be able to help with deaf awareness.

Interestingly, I have learned from one of my club members that they refused to implant their young child due to risks, such as not being able to use AED in an emergency.

Is this true or just a misconception? I am now worried that there are other important info that I should've known but am not told.. anyone has any idea? 

[Mary Beth]

@Renachelw

 

The best pace to get accurate information about CIs is our CI centers.  My CI surgeons and audiologist explained everything to me thoroughly before I was implanted. There is a lot of misinformation about CIs.

 

Maybe it would be helpful for you to make a list of your questions and bring it along when you have an appt at your CI center.  I always bring a list of my questions along to appts.  Good luck!

[hadron]

@Renachelw Everyone responds differently with their CI. Some people understand speech and music with no problems like @Mary Beth and others have real difficulties. Your experience will be your own. It is good to hear the success of others and know what is possible but please don't rely on their success.

[Glenda]

I have tried finding another hearing aid that would work for me after my analog aid quit working after 25 years.  I have tried to find another aid that would work for me but no luck.  I am very scared as i feel i will never hear again like im used to with my aid.   People tell me to do CI but im so scared to do it as im a very hard person to work with and stubborn on any new challenges.  I have Tinnitus and wondering if that goes away after CI?

[Mary Beth]

@Glenda

I am sorry you are in such a frustrating position.  I remember that feeling very well.  By the time I decided to explore cochlear implants there just was no hearing aid that could help me function well.  I was lip reading and was so exhausted and so frustrated at the end of every day.

It may be helpful for you to explore cochlear implants at a CI center and learn more about them.  Then you can decide what is right for you.

Wishing you the best.

[Jewel]

@Glenda

Hello, sorry your HA died and that there is no HA that is powerful enough to help with your hearing loss. 

When I was told that Cis were my only option, I refused to accept it and I wasted money buying more powerful HAs over a 5 year period in the hopes that I could prove the doctors wrong. The HAs offered me little help. I still had to rely on lipreading mostly and I still couldn't hear over the phone. 

I finally decided to get a CI and I'm so glad I did. I hardly have to lipread anymore and I can usually hear over the phone with ease. 

My deaf relatives have seen how it has improved my life tremendously. However, they won't go for the CI for themselves. Some people are afraid of the unknown but nothing tried, nothing gained. Of course there are no guarantees with CIs, but it seems that most people make improvement in terms of hearing when they get CIs. So I encourage you to do your research and see what's best for you. Wishing you well on your journey. 

[Glenda]

Hi Jewel!  

 

Thanks so much for your input and caring.  I really appreciate it!

I do have a couple questions

Did you have any side effecfs from the surgery like loss of taste or metallic taste or face paralysis etx?  Thats what is scaring me the most and of course the unknown what it will sound like.  I am so picky about sound that it has to be clear sounding or i go crazy.  Have tried all aids and none came to what i am used to....also do you have tinnitus?

[Glenda]

Also..i was hoping that there would be a cure for hearing loss as i have heard there will be something in the near future so was thinking of waiting for that to try..like stem cell regeneration

[Megan L.]

Hi @Glenda

Sorry to hear that your HA died. I know that scary feeling all too well! I had 2 HAs before I got my left CI. 
 

CIs are life changing 😊 I have no regrets and it changed my life for the better. The thing that scared me was when my Audi told me that if I lose any more hearing, I’ve maxed out the most powerful HA on the market. That really made me consider getting a CI. Plus I had 0% discrimination in my left ear so I literally had nothing to lose. I also had tinnitus really bad in my left ear and the CI has tremendously helped that. But it does come back from time to time when the CI is off. 
 

As for side effects of surgery - I had terrible vertigo and nausea following my surgery and the day after. I had a slight metallic taste for a few hours and no facial paralysis. Everyone’s experience is different from surgery to hearing but it helps to know what is possible. 
 

And my surgeon at Johns Hopkins is conducting research and studies on hearing regeneration- one of the main reasons I chose him. I have nerve damage and stem cell would help me. Sadly, when I asked him when that might be available- he said at least 20 years ☹️ I’d like to think CIs are a good option until hearing regeneration is available! 
 

I wish you all the best! And please ask as many questions as you need 😊 There are a ton of great resources here on HPs

[Kylie]

Hi @Glenda

I had no negative side effects from the surgery. And like @Megan L. my tinnitus is gone when wearing my processor, but I occasionally notice it when I go to bed (though not very often.)