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Implant & switch-on


Toni Anne
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So, a week ago I had my right sided implant along with sinus surgery.  I had switch on Thursday which saw me hearing "something" in my right ear after 23 or so years.  I have had a couple of set backs from both procedures which has left me feeling pretty yuck & unmotivated especially (to be honest) as I was hoping for more from switch on.  I know first & foremost, I need to allow myself the time to recover from the surgery & the set backs but somehow, among my family of 7, I have lost the place of priority - perhaps I should have stayed in the hospital as I seemed pretty important then lol!  In all seriousness, I am in need of advice & any tips to make this cochlear implant journey as successful as possible.  Cheers :)

 

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Your body has been through a lot. I had 3 1/2 weeks between surgery and activation.  I'm not sure I would've been ready for activation at one week.  Give yourself time to recover.

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I had a rough surgery also. I had four weeks to recover. So take it slow do only what you can handle. Forget about everyone else and everything else. When you're feeling better look at our aural rehab forum. There you will find some great resources. It took me about 21 days to feel perfect again. 

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Hi Toni Anne, like you  I was activated in a week after my first surgery. Could hear not so much until the first mapping. And according to my test results, I had not a big progress until 3 months post surgery mark despite I saw noticeable improvements in my speech comprehension ability. That my implanted ear was only about 10 years out of service (not 23). So, I am sure you will be fine soon. Just don't worry and practice any way you find suitable for you. Tomorrow is a week since my second CI surgery and another activation day. Have no idea how it is going to work this time. Hope it will better as this time it will be my working ear. Will see.

Please, like Kara advised, look at our rehab topics that can give you some ideas about rehab training. And if you have some specific questions, we are here to help.

 

Best of luck and chin up :)

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  • 1 month later...

I have had my sonnet on for 9 weeks and honestly so far it has really been a challenge. I get the bubbling so strong that it just wipes out any clarity I might get with speech. I was adjusted or mapped as we call it each week for the fist month now its once a month. I am good at home with wife but outside in meeting or something like that its impossible and frustrating. They tell me can take up to 6 months to year just interested in others experience. The implant ear is my left one and i have hearing aid in right.

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Hi Richard,

 

My CI experience did not begin with speech in either ear.  Right started with static and beeps and left started with marimba and a whale song.  Smile.  I found that doing lots of aural rehab each day really helped my brain figure things out.  Check out our topic on aural rehab for tips.  Hang in there.  It takes time but for most of us, it also takes practice (aural rehab).  

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Hi Richard you were talking about outside and in meetings. Well in meetings a Bluetooth neck loop with a removeabke mic will help there to block out background noise. Did u receive a Quattro 4.0? 

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Mary Beth & Kara:

I thank you both for responding. I just needed to hear from others what they experienced. I admit I have been practicing enough but  I will certainly do it now. Kara I just opened the Quattro 4.0. This is just what I need thank you for your advise. I only wish both of you continued success. I will keep in touch.

 

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Your welcome Richard!! Keep up the good work!! Remember practice, patience and perseverance. It's our motto. The three Ps. 

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  • 1 month later...
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Toni,

how are things going with your hearing journey? Hoping things have been improving

 

adam

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  • 1 month later...

Richard, you are the first person I have seen referring to "bubbling."  Glad I am not alone!  I have been describing speech as having a background bubbling sound for months.  It's like a vat of bubbling oil in the background of speech!  Seems like the volume has to be "just right" on the TV or the bubbling is too distracting to understand the speech in front of it.  If I crank up the tv volume high enough, the bubbling is still there but I can more clearly hear the speech.  I pretty much have to be sitting in front of the tv to hear anything over the bubbling.  If I walk into the kitchen (5 steps away from the TV) I can forget it.  It just sounds like static & a bubbling noise.  I have been activated for 6 mths in 1 ear.  The other ear I have some very low tone hearing but it was pretty much useless before I received the implant in my other ear.  I hear people say they can hear people yell upstairs to them.  I can't imagine this!  I can't hear people sitting right behind me speaking.  I know it's relatively early in the process & my audiologist says I am already hearing better than some ever hear with an implant.  We have determined it may be a matter of perception for me.  I had almost 100% hearing in my ear then suddenly lost it.  So I guess I am comparing the very good natural hearing I had very recently to the hearing I now have with the implant.  Adjustments have been made to my maps but we can't seem to get rid of the bubbling & I end up going back to the map I've been using for some time & test well with. (If only the real world could be like the sound proof booth!!) I've convinced myself I just have to realize this is going to be my "new normal" & it's not going to be like my natural hearing I had not so long ago.  I listen to lots of audio books on my ipad & my audiologist says I am certainly practicing & training as I should.  Lots of unknowns but even if it never gets better, it's still a miracle.  Richard, has the bubbling gotten any better for you?  Anyone else experience this??

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Hi Travel,

 

Can you describe the bubbling a bit more?  Is it a low frequency sound (bass kind of sound)?  Are you using a Sonnet processor?  Did you also receive a Rondo processor?  If so, is this bubbling sound the same in both the Rondo and Sonnet?

 

I can tell you that I am able to have conversations from other rooms and from upstairs/downstairs with my CI.  However everyone's experience varies.

 

You are right that it is much more important how we function in our real lives than how we test in a sound booth.

 

Are you able to understand speech in your daily life without visual cues from people (not the TV or radio but actual people)?

 

Are you able to hear in the telephone?

 

Sounds like you are doing aural training with audiobooks.  Are you just listening or also following along with the text?  

 

If yiu explain a bit a bit more about what is easy for you to understand and what is difficult, maybe we can suggest some training activities that may help.  Or are you understanding most things but just not liking the sound quality?

 

by the way, welcome to the group.

 

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Thanks for the welcome!  I have a Sonnet only.  The best way I can describe it is a rolling, bubbling noise in the background of all speech I hear.  I've tried to isolate it to high pitched, low pitched, women, men's voices but it's with all speech -- in person or on tv.  I guess at times it just sounds like base feedback coming back at me after I hear the speech. If I am close by the person speaking, I can typically make out everything being said but if I move a bit away from the person it's just incomprehensible static.  Another way to describe it is kind of like a bee buzzing type of noise (vibration type noise) when I am not relatively close to the person. Originally my audiologist thought my brain was still just adapting to hearing with the implant & speech would start to sound more normal.  But as time went on & my test scores in the sound booth indicated I was hearing & understanding speech, then the latest hypothesis was just that my perception is different than someone who has had progressive loss & bad hearing for years until they finally received the implant & then it sounds pretty good to them because they are going from bad to much, much better.  The thought in my case is I went from great hearing not so long ago & then when I got my implant I really notice it sounding not so great to me!  I hate to think that this is as good as it will get.  My Dr at my 6 mth follow up said it can improve up to 2 years out.  I am just wondering if I will ever hear without the rolling, bubbling noise in the background.  I've really not noticed any improvement with that along the way.  Telephone--definitely much harder but I can do ok on speaker phone.  Have been trying to make myself listen with the handset but the volume is just too low for me to accurately hear that way.  (I'm the one asking about the Bluetooth cordless landline phone).  The aural training with audiobooks.... I have the actual book in front of me that I follow along while I listen.  I've actually been wondering if I should try listening without following along in the actual book to see if that would help.  I have had numerous issues with the hardware since I received it & I have received replacements of pretty much everything.  But the new equipment has not changed how anything sounds to me.  Any thoughts or suggestions would be much appreciated.  As I have searched this site, I was disheartened & surprised to not see anyone else reporting it sounding like I am experiencing.  I do realize everyone is different & maybe I'm expecting too much??  Also, please don't get me wrong, I am so thankful for my implant & will continue to be even if I don't experience any additional improvement.

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I tend to believe there are ways to improve what you are experiencing.  For many Sonnet users,  the bass electrodes have needed to be turned down a bit.  I would suggest trying that with your audiologist to see if it helps.  It is important to do aural training that is auditory only too.  Check out our topic in aural rehab for many ideas.  You are in the US, correct? Check out the image guided CI MAPping study at Vanderbilt.  If it was me, I would explore options to reach a better sound quality.  Many sudden deaf members in our FaceBook group are reporting great sound quality.

 

The group is called

Med El Cochlear Implant Discussion Group

 

Check it out and post your question there as well to hear other sudden deaf experiences with CI sound quality.

 

Good luck finding a solution.  I wish you the best.

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Yes, I am in the US. Thanks so much for your information, Mary Beth.  From your own experience & in corresponding with others, do you feel speech can sound pretty clear & natural with the implant or do you think it's common to hear as I do with the implant?  I just don't know what to think anymore.  I have wondered if I just am expecting too much from the implant & never corresponding with anyone else who has had one has left me kind of in the dark. But different posts I read on this site lead me to believe things could maybe be different.  Before I received my implant, my Dr. predicted I would like it so much I would want to have my other ear implanted.  This couldn't be further from the truth.  With the sound quality I currently have, I can't imagine ever wanting my other ear implanted. I've gotten a little beaten down by the experience & having my audiologist suggest it's just a matter of perception since I suddenly lost my hearing.  Everyone there tells me my testing results indicate I am doing great & at 6 mths I am hearing better than most with implants ever hear.  I was finally trying to convince myself that I was just going to have to accept this & realize it's as good as it gets.  I guess I will finally have to break down & sign up for Facebook! -- yes I am one of the few holdouts who never joined.  Gasp!!  Please feel free to share any other thoughts.  It is so nice to know there is a group out here I can correspond with.  Thanks again!

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Travel, I saw my audiologist 3 weeks ago raised my volume on my implant its horrible it worst than before and I am coming up on 5 months its so bad now I often really have to take it off. I am going on the 27th to see her to adjust this again just can't unfortunately get this implant to work at all for me just so much noise from it bubbling etc just overrides any good it might be doing. This is really frustrating. I do pretty well on the med el excercises but on outside or if there is any bit of noise disturbance and even sometimes not I just can't pick up on voices with any clarity. I will let you know how I make out on my appointment.

 

Richard   

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Travel,

Since we are confessing.......I only joined FaceBook for that group!  Totally worth it!  

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Hi guys! I have a friend who has an implant also. She has had many difficulties with hearing with her implant. She had her whole processor replaced at 8 months and she finally got better sound quality. So don give up. She suffered from much background noise and was almost giving up. It also requires much aural rehab. So work hard!! Best of luck. 

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Richard, Thanks for your reply.  I'm so sorry you are experiencing the bubbling background noise as well & it doesn't seem to be getting better.  Believe me, I know how frustrating it is & it sounds like yours is even worse than mine.  Please keep me updated after your appointment.  I certainly hope they are able to make an adjustment that helps.  Unfortunately, so far the mapping changes the audiologist has tried for me have not helped & the audiologist seems to be at a loss other than the suggestion that it's my perception.  I have really started to doubt myself, my expectations, etc.  Very discouraging. 

Kara, thanks for sharing!  Everything I've previously read on this site has seemed to be so positive that I've been thinking.... How can I be the only one experiencing this??!  Can feel so alone in the journey.  I have done LOTS of rehab from the start & continue to.  I've been wondering if I should schedule an appointment with a different audiologist that might have some other tricks up his/her sleeve to try.  I don't want to offend my current audiologist, but really this is such an important part of my life!

 

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Richard, I am really hoping you can get things worked out. I know you must be frustrated.

 I had something similar happened to me. It was with the higher pitch electrode 12. The sounds of even taking silverware and dishes out of the dishwasher it was to the point that it hurt. We ended up turning off electro at 12 for a little while until my ear Could get used to the new sounds and that I was hearing. Eventually we turned it back on and slowly started to turn it up to where it should be. Everything now is fine but I did take a little time. Try to have patience.

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Travel

 When I first got activated, everybody's sounded like cartoon characters. Other things sounded totally different than I remembered. It did take some time for things to settle down. Eventually things started to sound more normal but again I had to work hard at it and be patient.  My second implant was completely different that activation. Everybody sounded like a robots and everything sounded synthesized. It was totally different from the first activation. Things seem to progress and much quicker the second time than the first. I hope you guys can get things figured out soon and start seeing some progression. I think a eventually you'll really enjoy it and be thankful that you made the right decision. 

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Med-El has regional CAMs who are audiologists who help our clinical audiologists.  You can ask your audiologist to schedule an appt for you when the CAM can attend.

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  • 3 weeks later...

Richard,

I'm curious how your appointment went on the 27th.  Was your audiologist able to make any adjustments that helped the bubbling?  I'm still dealing with this & am still very frustrated.  I did visit a different audiologist & she said if it's just that the brain hasn't adjusted to the implant yet, usually it's adjusted by this point.  I'm coming up on 7 mths.  She was unable to do anything to help it in the mapping.  She said it could be the brain still trying to adjust or possibly a hardware issue.  I have had hardware issues & have pretty much everything changed out once or multiple times.  The bubbling persisted in all cases.  The last processor seemed less bubbly, however, the speech was much more muffled so I made the determination that the non-muffled speech with bubbling was better than the lesser bubbling & muffled speech & sent the less bubbling processor back.  However, now I am doubting my decision.  Curious how things are going for you.  Sending best wishes your way.

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Hi Travel & Adam:

 

I had her do adjustment for the bubbling on the 27th without adjusting the volume and she turned off she tells me 10 11 & 12 still have bubbling heavy but I seem to be adjusting somewhat but yet jury is still out. I am seeing surgeon on the 23rd for my 6 months since surgery so I will speak to him about this and I will ask him if its not possible that the electrode might not be faulty to some extent or moved out of placement can happen from time to time. Adam, audiologist had told me she had turned off 12 a few months back. I am sorry I haven't responded to either of you sooner. I hope everyone finds improvement your all so good. We are all in this together. Travel we both need to keep the faith Adam is doing it others also this is tough no doubt so challenging.

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At one point in the past my audiologist turned off electrode 12 as well but I found it made speech very monotone for me so I never really used that mapping.  She did turn it down some in my other maps.  I just don't understand what's up with this bubbling.  I was hoping you had found some relief, Richard.  I will be anxious to learn what your surgeon has to say.  Please keep us updated.  It certainly is a very long journey.  I hope we look back on it a year from now & the bad portions are only a distant memory!  Thanks for the update & know that I am hoping for much improvement for you!

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