To Infinity and Beyond! From Surgery to Activation

Okay.  Surgery is over and you now heal and wait.  Since this was my first surgery of any type, ever, my very first reaction was relief that it was over and all went smoothly.  I’m very fortunate to have generally great health and the first few days of not feeling well were hard to take.  The anesthesia caused some nausea for me and I felt pretty unsteady.  Okay, but moving slowly and carefully.  Getting up and down from a sleeping position was uncomfortable. And I slept a lot, which I think contributed to good healing.  I was lucky to have my husband close by, since he works from home, and I do not have anyone else relying on me for care.  After about a week I was feeling myself again.

Once I felt well enough to venture out I was immediately struck by my increased deafness.  Prior to the surgery I had some residual hearing in that ear, about 20%.  Surprisingly, the loss of this hearing was really noticeable, especially when I was in noisy environments.  It felt like a blanket was over my head.  Communication relied heavily on lip reading. That was kind of scary and bummed me out a bit.  I looked for reassurance by reminding myself this was temporary.

The small amount of usable hearing in my right ear, not much maybe 30%, helps anchor me in the familiar and reduce the anxiety over increased deafness.  It’s such a reminder of how quickly cut off from the world we become with no hearing.

I work full time and decided to take off the period of time between surgery and activation, including a week or so post activation.  I wasn’t sure exactly when activation would be but my surgeon had a general rule of about 4 weeks recovery after surgery so I used that as a guideline.  My rationale was that communication would be too challenging and stressful.  Rather than try to tough it out, and frustrate both myself and my coworkers, I decided to take a break.  In retrospect, this was a good move.

A week after surgery I visited the surgeon for a post-op check up.  The incision was still healing and a bit sore.  Some bruising and some numbness at the top of my ear and at the incision site itself.  I also had some numbness on the left side of my tongue, sort of like the after effect of a burn from hot pizza.  The surgeon was pleased with the healing and said it all looked normal.  She also said the numbness should subside over the next couple of months.  (The numbness is pretty much gone 1 month after.)  Funny thing about seeing the surgeon was that I got a little bit emotional.  Now that’s my nature for sure but I was still surprised.  Again, I think it was relief that it was over and all my pre-surgery fears proved to be unfounded.

Ready to Schedule Activation

Because I was very motivated to “get the show on the road” I asked to get activated as soon as possible.  The surgeon ok’d activation for me at 3 weeks post surgery.  From other CI recipients I’ve heard waiting periods from as short as one week to as long as six weeks.  For me, I don’t think I would have wanted to go any earlier because the area would have been too tender.  Even so, the scar is still a bit sensitive and there’s some soreness but not bad.

The next day after the visit to the surgeon, I contact the audiology department and they scheduled my activation date for a couple of weeks out.  The exact date happens to fall on my birthday.  I take this as a good omen and one very exciting birthday gift!

Waiting and Connecting With Others

I tried to occupy myself with other things while I waited.  I was sooo curious about what the activation experience would be like and how I’d do with the implant.  I was lucky to have support of other implant users and I tried to take advantage of that, both via online forums and a local BEA chapter meeting.  Even though in person communication was more challenging I really loved seeing other recipients and hearing their stories such as:

• A young boy, about 9 years old, who was implanted as a baby.  He’s wants to find out how he can get the new Neptune waterproof processor so he can go swimming and hear at the same time.
• An older gentleman, in a wheelchair, who was recently activated and is trying find out about aural rehabilitation to make more progress with his CI.
• A young woman, born profoundly deaf, who now uses bilateral CI’s and can hear her Mom from another room.
• A man, who had a CI device that failed, and had to have another surgery to re-implant one.  He’s doing great and has nothing but good things to say about the implant vendor.
• A middle aged woman who had sudden total hearing loss and now uses bilateral CI’s and you would never know it.
• A couple of people who are candidates and trying to decide on which vendor to choose, surgeon, where to have it done, insurance questions, etc.
• A Mom whose impaired hearing suddenly took a nose dive.  Trying to simultaneously cope with the traumatic effects of the hearing loss, while continuing to work, take care of a family and arrange for CI surgery as soon as possible.
• Several grandparents whose greatest post-activation joy is that they can now hear and communicate easily with their grandchildren.

I am reassured by the stories I hear.  I’ve yet to encounter one recipient who regrets their decision.  One of the most common comments I hear is, “I wish I had done it sooner”.

I also adopted a new mantra to help me through the waiting period, “patience and faith, patience and faith…”  As I naturally lack much in the way of patience this is challenging for me.  I’m often referred to as a go-getter.  My understanding, so far, of the implant experience is that while there is some amount of go-getting much of outcome and progress is at a pace that I cannot dictate. Again, patience and faith.

Another critical lesson I’m learning through the implant experience is the importance of reaching out, asking for help, connecting with others in your situation.  This is true for dealing with the effects of hearing loss in general as well as the unique aspects of the CI journey.  I can’t emphasize this enough, even if I’m feeling in a bit of a funk, talking it out with someone else, sharing my concerns and celebrating my successes is so helpful.  It also feels good to give back when I can from where I’m at in my own personal journey.

About me: I have sensorineural hearing loss in both ears.  Left ear slightly worse than the right.  I was diagnosed at about age 8 and I’m 51 now.  Hearing loss runs in my family. Since the progression was very gradual, I was able to acquire speech normally and function at a high level.  I never used hearing aids and I rely heavily on lip reading.  It got to the point where I was struggling too often to communicate and the cochlear implant was my only option for better hearing.

Barbara Johnson