Considering CI - Looking to Connect with Similar Patients

[Kristi]

Hello,

I am currently considering cochlear implantation and am hoping to talk with some people with similar histories.  I am currently in my 40's and have bilateral sensorineural hearing loss , sloping from moderate to profound.  I have had lifelong hearing loss, but didn't get hearing aids until college.  Since that time, I have had gradual progressive loss, to the point that I have recently been told that I qualify for CIs due to my speech discrimination falling to about 50%.  I currently have an Esteem implanted hearing aid on one ear and a traditional aid on the other.  As I have some (albeit poor) hearing capacity, I am concerned about losing my residual hearing,  as well as the possibility of not responding well to the CI and ending up worse (or no better) with regard to clarity of speech, etc.  I also work in the medical field, and have questions about the recovery process, if/when to expect to be able to return to work, etc.  I am hoping to connect with some of you who have gone through the CI process under similar circumstances.  I am just at the very beginning of this process - my initial consult with a surgeon hasn't even occurred yet, but I want to gather as much information as I can before making a decision.  

[Mary Beth]

@Kristi

 

Welcome to HearPeers.  We are a friendly group.  Feel free to ask questions.

I have shared my CI story and CI + music story online.  I’ll give you a link in case you are interested.  Feel free to ask questions.

 

wishing you the best!

 

[Mary Beth]

And here are links to more of my CI story

@Kristi

 

[Andrew42]

Kristi, I hestitate to respond because my experience does not go very far down this route. A little bit of background: nearly 80 with hearing aids in both ears for the last 10/15 years. Increasing inability to understand. Complete loss of music, ( v. Important emotionally). For reasons not germaine, decided to go for CI. Surgery. Faced with this weird decision that I, the non-expert had to decide with implant manufacturer to accept, I did a lot of non-technical research because I’m not technical. But this included one on one meetings with qualified engineers working for two of the main companies, Cochlear and Med-El. Whichever way you decide to go, I strongly recommend this step. I also recommend you research the experience of the hospital you choose and which manufacture they use most. They will tell you that the top manufacturers are all good and you can’t make a mistake. Right, perhaps, but they have more experience with one than another.

my surgery was a month ago. Activation next week. So that is far as my experience goes.

But: I think I have lost all residual hearing in my right ear. I also think I understand as much as I did before whilst using only one hearing aided ear. So, so far so good and activation can only be good because if it isn’t I’ll simply turn the CI off and whine to my surgeon!!
 

My surgery was simplicity itself. In hospital the day before, operation, one night more and home. But….No pain. Minor discomfort behind the ear, unable to sleep on the operated side for about a week, minor balance issues. That is all. I am retired but from the way I felt I could have gone back to work two days after surgery. 
 

I cannot tell the result, which naturally is what you want to predict. All I can say at this stage is what I’ve written. Plus, this Forum has lots of comments, advice and experiences. 
 

Good luck.

[Hicksy]

I’ve put my story on here a few times but it is much like yours, progressive hearing loss in both ears with the exception that hearing aids didn’t help me at all. Finally well past the point, I had to face the loss of my residual hearing, loss of music, etc… and took the plunge.

Recovery was a breeze but on activation day I learned I had indeed lost my residual hearing. A minor blow compared to the cacophony of sounds I could hear.

I’m coming up on five years in a few months. It hasn’t been perfect. I still need CC on the TV, find phones iffy depending on the voice, music is a lot better but a long way from perfect. But to compare to pre-implantation? Simply no comparison. Light years ahead now, couldn’t imagine going back, residual hearing or not.
Its a scary step to take but I’ve not regretted it at all. 

[Dianna]

Hi kristi, i was in similar position, i am now 65, implanted august, activated sep 10. Surgery was much easier than expected, kind of similar to having impacted molars removed but much less painful! I was up and around slightly unbalanced and tired about a week. I probably could have gone to work after a week.  I thought i had lost all residual hearing in the implanted ear but nope, my implant works well with the medel sonnet 2 eas which combines electronic and accoustic. I could hear conversation although it was a little micey sounding. Im at 2 months activated and my rehab scores are better than before implant. Its not perfect, but its so much better! I havnt added the hearing aid yet, but im doing well with ci ear and nothing on right ear that is 50 percent!

I am retired and no kids so i rehab every day and having the best time hearing new sounds all the time!

I cant wait to get a good hearing aid on the unimplanted side and see how big a jump to bimodal!

Ask away here there are experienced and tech folks here!

Welcome!

[Darlene Mac]

Hi Kristi!  It's a great idea to connect with other people with similar experiences before starting out on your cochlear implant journey.  Here's my story.  I lost most of the hearing in my left ear at the age of 7 due to mumps...sadly before vaccine for mumps was available.  I started wearing a hearing aid in that ear when I was 15 and did well with that until my late 20's when my hearing deteriorated until I needed 2 behind the ear aids.  As time passed my left ear just kept getting worse and worse until hearing aids were of no use.  I used to joke to my husband that that ear was good only for hanging earrings.  In 2012 I got my cochlear implant in my left - previously useless ear.  There were lots of appointments before I even met the surgeon, but the audiologists were amazing and very supportive.  They answered my every question and helped me understand the procedure.  The surgery was painless with a one-night stay in the hospital.  I had no pain post-op, but they offered pain meds if needed.  I was nervous about activation, which took place 6 weeks later - giving time for the incision to heal.  At activation, I could immediately hear little beeps.  It was my husband across the room texting.  My previously dead left ear was able to hear the beeps from his phone!  My team of audiologists and speech pathologists had warned me beforehand that things would sound 'tinny' for a while as my brain adapted. I had a couple of follow-up appointments with my audiologist to make sure the settings were just right for me. Unlike a hearing aid, you don't have to turn up your processor.  I don't even adjust mine at all, in any setting.   My surgeon - my hero! - told me I had some hard work to do to rehab, and he was right!  I did the rehab and listened to absolutely everything, and gradually the sound of voices became normal, sounds of nature, conversation, music...everything just got better and better with time. While it was a rewarding experience, rehab can be exhausting as your brain adapts to all the new sensory input.  It was important for me to rest and take care of myself so I didn't become overtired and frustrated.  It was an incredible journey; life changing for me.  I hope it helps, knowing that others have gone through this, starting with the question, 'Should I do it?'  This is a great place to ask questions and get support from folks who understand.  I wish you the best, whatever you decide to do! 🙂