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Post surgical experience


Mary Featherston

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So I'm working my way through the week here and wondering if what I'm experiencing is typical.  I've not had a huge increase in tinnitus in the implanted ear (but then I had pretty serious tinnitus already).  I also don't have significant pain anymore, five days after surgery.  But....I do still have swelling and a weird awareness of the implant sitting there under the skin on my head. 

Was this something that you experienced CI peeps had happen also?  How long did it take before that went away and it just felt like your head again?

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I think this varies greatly from person to person.  For me, swelling was minimal.  I did not have a sensation of the implant being in my head unless I touched the area or laid on that side.  After awhile I could lay on that side without any problem at all.

I have read reports from other people of various degrees of awareness of the internal implant.  Some people described it as feeling like a stone was in their head.  People reported that this all improved with time.

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Thanks, @Mary Beth - I thought that must be the case.  I have EIGHT appointments now, one post-surgical with the doctor, six with the audiologist and one with someone who's supposed to help with aural rehab.  I'm hoping the snow melts quickly so the driving into the city isn't too bad.

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What kind of schedule does your CI center use for activation and MAPping?

My center did this.....

activation- leave with 4 MAPs to work through in one week

1 week later- leave with 4 MAPs to work through in one month

1 month

1 month

1 month

3 months

6 months

 

Every CI center does this a bit differently.  I was able to add more MAPping appts when needed.

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Good question - bear in mind that I haven't had the first yet so I can't speak to the MAPs.  But I have activation on 5/9, a second appointment with the audiologist on 8/15, a third on 5/30, then on 6/20 I have the aural rehab person and the audiologist, 7/16 audiologist 8/7 audiologist and 11/7 audiologist.

Looks a little more compressed than your schedule.

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Pretty similar MAPping schedule.  Looks like your center adds one extra appt in on 05/30....

activation

1 week

1 week- this is the additional appt

1 month

1 month 

1 month

3 months

 

Looks like a great schedule.  You will be amazed at how fast things change in the beginning.  Getting excited?

 

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Oh, @Mary Beth, I've BEEN excited.  I come here and talk to you folks, I talk via instant message to a friend in Canada with a CI and I impose on all my hearing friends too.  :-) 

Such a big deal.

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Smile.  I know you are excited @Mary Featherston.  Smile.  I remember it well.  Can’t wait to follow along on your journey.

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The thing is, I've been struggling to function longer than I think I needed to.  I was working with an audiologist who just basically got me into new hearing aids every five years or so, but I can't talk on the phone and I don't hear in meetings and never mind noisy restaurants.  So when that audiologist went out of network I got a referral from my primary care doctor and had my hearing retested and this new audiologist was amazed that I hadn't considered CIs before.

I'm not angry with the guy, but I do think that I missed out on quite a lot the last 5-10 years.  So yeah.  I'm ready for this!

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This is my schedule. I will ask about it as it seems small for someone in a study. 

B2410C54-7C50-45CC-964E-A37A5FD4BF84.png

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I'm Mary E of southern California.  I had CI surgery on April 2nd and, because my other ear has no hearing at all, I have been joyfully deaf and will continue to be so until I get that first appointment with my audiologist on May 8th.  I don't mind being deaf or not driving (because it's so unsafe to drive while deaf), and even the new tinnitus I acquired since the surgery does not really bother me.  I look forward to working my brain as hard as I can to improve my hearing once I get it back, and the surgeon told me I will have almost normal hearing.

The only question I have is, I have met a couple of CI people who have lived with the CI for many years, and they aren't doing nearly as well as I thought they should.  I wonder if I'm being overly optimistic?  They seem to be where I was when I wore my hearing aid before starting to lose my hearing, and I certainly wonder...?

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Congratulations @Mary Elgab!

 

Which processors did you choose?

 

There are different levels of listening abilities with CIs dependent on several factors.  All we can do is devote ourselves to aural rehab and take our own journey as far as we can.  Your CI audiologist will play a huge role in your experience.  Wishing you the best.

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Hi @Mary Elgab@Mary Beth is correct, there are too many factors to predict what level of hearing you'll achieve, but your attitude is great.  From everything I've heard (I'm awaiting my first activation too) the more you work at it the better your results will be, within the limits of your physical abilities.  So go you!

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Hi @Mary Elgab  nice to meet you! I too am awaiting activation. Since this is my second implant I will dive into aural rehab and do the best I can to get the best results. I love listening to music and audiobooks. I will likely start with AB CLIX since it worked will for me last time. Best of luck guys! 

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Hi @Mary Featherston, @Mary Elgabhow exciting your first CI! 

@Mary Featherstoneveryone's reaction to surgery will be different and even your own ears can react differently.  My left ear was done first and I experienced a lot of swelling inside, so much so it felt like I had water poured into my ear!  It took about 4-6 weeks for it to completely disappear.  My magnet site was also really sore on that side so I was expecting exactly the same thing to happen to my right ear.  Imagine my surprise when my right ear completely breezed through it no problems at all!   I have tinnitus in my right ear only and that did flare up a bit after surgery but once I was switched on it calmed down again.  

@Mary Elgab how well you do will be up to you and what you are happy with.  It is a journey full of ups and downs and your desire to overcome the downs will influence your outcome.  If you had normal hearing before going deaf there is no reason why you can't have a brilliant result if that is what you are after.

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Thanks, @Leisa.  I have a lot of soreness around the ear and the implant but spoke (well, okay, my husband spoke) to the doctor and she is not worried, said I'm doing fine.

It is getting better, just slowly.  or so it seems, after all it's only a little over a week now!

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Hi everyone! I had my second CI surgery April 13 and am just now feeling up to discussing it. My first CI, it took two full weeks to feel “normal” again. This time around, the pain isn’t so bad it’s the dizziness that’s bothering me. Dizziness brings on nausea then?.  I was hoping this surgery wouldn’t be so bad as I knew what to expect from the first one. Until activation day, May 2, I guess I will just take it easy. 

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@Jackie Erickson, I'm sorry you're not feeling well.  But as you've clearly already decided, well worth the short-term ill-effects!  I've just been whining about head pain and having a protracted discussion about various pain relievers with some friends on Facebook but all in all it's a small price to pay if I can get some hearing back.

Best to you, I hope you feel better soon!

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Hi @Jackie Erickson sounds like your on the mend. You too @Mary Featherston  I have no pain anymore. I can’t taste sweets to the full extent but no pain so I can’t complain. Keep up the good work! We will need it once we’re activated. 

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On 19/04/2018 at 10:47 AM, Mary Beth said:

Pretty similar MAPping schedule.  Looks like your center adds one extra appt in on 05/30....

activation

1 week

1 week- this is the additional appt

1 month

1 month 

1 month

3 months

 

Looks like a great schedule.  You will be amazed at how fast things change in the beginning.  Getting excited?

 

3 weeks after surgery I have Activation day, then:

2 Days

1 Week

1 Week

3 Weeks

4 Weeks

3 Months

6 Months

9 Months

12 Months

 

 

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1 hour ago, Kara of Canada said:

Hi @Jackie Erickson sounds like your on the mend. You too @Mary Featherston  I have no pain anymore. I can’t taste sweets to the full extent but no pain so I can’t complain. Keep up the good work! We will need it once we’re activated. 

The surgeon explained to me why I can lose my taste or have facial paralysis temporarily. It is amazing what they can do in surgeries nowadays. Good to not having pain anymore.

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