Checking in on Nikki

[Mary Beth]

Hi there!

You are missed. Smile. The early months after activation are the most challenging months for many users as they work to adjust to the sound from their CIs. Just want to let you know that we are all here to help and that we miss you on the board.

Mary Beth

[Cara Mia]

Nikki, I miss you, too. Have not contacted you personally just because I don't want to seem invasive, but I think about you often. How are you doing? What are you doing? Come to chat with us.

[Hila]

Hi guys,

Hope you are all well! Thanks for checking on me!

Last Wednesday was my four weeks follow up. Boy, did this month seem like a YEAR!

It's been extremely challenging journey.

This is a breakdown of my rehab:

1. Activation plus first two weeks: initial set up and four maps that are essentially the same, but progressively louder : nightmare! Too quiet, couldn't hear a thing let alone understand anything, couldn't imagine getting through the day w/O my trusty hearing aid. worked with AB Clix and made some progress, but none in real life situations. I tried to deal with only CI but it brought tons of faustration.

2. Two week follow up : my audiologist checked and found I was not able to hear anything on two high range electrodes. I was a bit disappointed that I can't hear those sounds. I got four more, progressively louder, maps. I resumed working on my Clix just to find out i am back to square one. Everything sounded robotic again and there was an added chainsaw effect that was constantly present. Things got crazy at work and I just had to find a way to be positive and continue. Luckily I had support from people I met here and some people I have in my life. This is not taken for granted. Took my HA off only for training and still did extremely poorly with speech

3. Four week follow up -a breakthrough! I was psyched to find I am hearing sounds that I did not hear before at work. That was the morning before the appointment and this really lifted my spirits as I realized I hold the key to independence in my hands and this is extremely important to me. My Audi did hearing tests and I am where I need to be with sounds except the higher range, but it,s still work in process, right? I was only wearing CI during the appointment and she made some changes and turned these two electrodes and assigned those ranges to others. I don't really know what to think of that. But after all her voice sounded more round, my music sounds better and most important I walked out hearing speech without my little HA addiction. I think now I have the volume I needed all along. This month was so challenging and I still am exhausted

So this is an update, I have been thinking about all of you and I will definitely try to keep you posted and catch up on your process too.

Please comment, if you can, with anything that might be on your mind, reading my post. I'd truly appreciate it!

[Mary Beth]

Hi Nikki,

I have one electrode turned off on my right side due to a sound quality issue with that electrode. No problems at all. The sounds shifted onto other electrodes. I know someone who has several electrodes turned off due to his cochlea structure and he does great. So no worries about two electrodes being turned off. I now it sounds like it's a bad thing, but it's not .

It's very promising that you noticed improvement right away with this map. That is a great sign.

Just keep plugging along. It will improve over time but it improves in bursts, so don't get frustrated when. You are in between those bursts.

Thanks for the update.

[Ivana Marinac]

Hi Nikki,

 

The most important is that you feel that you finally feels that you have keys of your independence in your hands... When you feel down, you just need to remember that everything will set on its place - you (and people who surrounds you) need to have patience AND perseverance. This mantra is not a temporary advice - this is a marathon but even the most efficient runners need their cheerleaders. Please bear this in mind.

Also, what you are experiencing is also change of your neuroplasticity - your brain relearns how to listen and to process what is happening to you: it is also crazied with latest happenings: give it a credit...;P

[Mary Beth]

Yeah our brains really get a workout! They deserve to get tired and have a break when needed. Go neuroplasticity go!

[Hila]

While I'm at the point where I feel confident it'll get better, unfortunately my husband feels like getting the implant wasn't worth it. When I was in the stages of decision making we researched online and he came across a video of someone listing all his reasons why it was a mistake. My husband gets frustrated pretty quickly when I can't keep up with what he's trying to tell me. I had to tell him it will get better eventually. Today I'm wearing my CI only and can understand speech. It's not easy or ideal but I'm not wearing my HA and I feel it's a huge process. I told him he can read here many stories of people that are happy with their choice. If some of you can list one reason why they are happy with their CI, it'll be cool.

I can start:

1. I can hear more birds and the timer :-)

[Ivana Marinac]

I will pass your asking from the obvious reason, but - why is your husband disappointed? Does he understand that a CI is not a plug&play device?

You're still at the beginning of the path - like life is not a movie of an hour and half, like that rehabilitation of hearing is not switching on and off. 

[Hila]

He feels we communicated better when I wore HA and I don't think he understands the added benefit of a CI. I explained to him it's not like putting on a pair of glasses. I guess he's just short tempered and impatient and can't practice patience and perseverance if he is incapable of those. He did apologize for what he said but I know this is how he feels because it's not the first time he expressed his frustration. I know I'll keep improving and I'm hoping to see more benefits in the future.

[Sandy]

Nikki, it's great that your hearing is improving and to quote Adam, "it's a marathon, not a sprint." One day your husband will have the WOW moment, when your responses are no longer having to concentrate on every word and your response is automatic.

2). I can hear the wind in the trees.

[Mary Beth]

Nikki,

I could list numbers 3-100, but I'm not sure it will change your husband's mind unfortunately. I'm sorry you do not have his full support and help on your journey. Please reach out to others and build a support team. This is a journey that is best taken with others. Know that we are all here to listen and support from afar. You may want to reach out to other Med-El users in your area. You can ask on the FaceBook page.

[Hila]

Hey girls, thanks for the encouragement. Thankfully I have amazing co workers - their eyes sparkle when I tell them my wow moments. I still don't know what the future holds so I wanted to get some examples from you. The sound of the wind through the leaves is definitely worth living for. I also cannot wait to go to the water with waterwear and be able to communicate with my husband when we're out kayaking. Maybe then he'll see the advantage :-) :-) I truly hope so. I know it's also partially my fault because I normally just take care of business myself but here I realized I need the people around me to make it a successful journey. I'm diving in. Thanks for being here, guys.

[Mary Beth]

Hearing your cat purr

[Hila]

They usually do that on my face/neck/treachea, so maybe hear them purring from afar is a better target.

[Kara of Canada]

The "bird concerts" there are so many birds right now that I can hear them all singing now!! Never before so crisp and clear. Nikki my husband didn't support me in my decision either. But the improvements it has given me like I can now talk on the phone. I haven't don't that for 5 years. He asks me now when I am getting the next one done! I had some major issues with my surgery so that was hard for my husband. But he is on board now he even figured how to put it on me and turn it on! I had a seizure a while back he put it in after so I could hear him. When things get further along hopefully your husband and friends will have no regrets. Keep us posted!

[Cara Mia]

Nikki, I am so glad to hear from you. Reading you posts I could see a lot of myself some time back. I noticed that the changes in my speech understanding have some discreet leap when, initially, it seems that nothing happens despite how hard you practice. Then, suddenly, you get your skills advanced.... So, it is kind of a transformation quantity into new quality. After I got it, I just do what I should without setting any goals and terms. And I believe that our brain needs some rest from time to time to sort and reorganize all that we pushed it to take.  You know, after downloaded updates the system has to be reset and restarted.

Sometimes I allow myself to do nothing for rehab, just do happy things and sleep as much as I want. that helps.

 

I cannot name just one reason why I am happy with my CI. It is my life changer for good. Now I am enjoy a lot of things that I couldn't before (a very long list including birds, kitchen appliances, water, wind, etc). I got a lot of my confidence back which is very important for me. And  I feel more independent now ( I looked like that but I didn't feel it for many years). I am becoming a different person, and I like that new person more.

 

I also had (and have) some hard time with my husband. After activation it was disappointment that a miracle of "plugging in" didn't happen, then frustration over me disappearing in my "rehab studio" instead of spending time with him. Now, I don't know what, but I think he is afraid that my growing independence diminish his role in my life..... Sometimes it hurts, sometimes I can find pluses from our "situations" - just go outside to listen to birds not to listen what is better not to let him to say me. Hung the second feeder for hummingbirds, out dogs spend more time in a forest, bought the fancy shoes for summer, managed to handle my last mapping alone....

I deal with that our hard periods by involving him more in my rehab despite his resistance (when I can), share my good and not so good moments. And I take everything easy, I know that some day he will feel bad over some things he told me. And humor - it helps a lot. But sometimes I think that one more word and I go off like a real drama queen then counting to ten...... It is temporary

 

Ok, last your month was like a difficult year, the next month probably still will be long but promising, then you will get not a just good serving bionic ear but the wings growing out of your back. Everything's gonna be all right! My warmest wishes 

[Mary Beth]

Cara,

What a beautiful post written by one who has/is walking in your shoes Nikki. Thanks for sharing. These CIs do send our loved ones on journeys of their own too.

[Ivana Marinac]

He feels we communicated better when I wore HA and I don't think he understands the added benefit of a CI. I explained to him it's not like putting on a pair of glasses. I guess he's just short tempered and impatient and can't practice patience and perseverance if he is incapable of those. He did apologize for what he said but I know this is how he feels because it's not the first time he expressed his frustration. I know I'll keep improving and I'm hoping to see more benefits in the future.

 

 

Nikki - 3P or patience, practice and perseverance is not just a mantra, there is a physiological explanation for its results. 

For instance (although this is a complex explanations): http://jonlieffmd.com/blog/how-does-neuroplasticity-work or https://www.quora.com/What-is-neuroplasticity-and-how-does-it-work

[Ivana Marinac]

Cara,

What a beautiful post written by one who has/is walking in your shoes Nikki. Thanks for sharing. These CIs do send our loved ones on journeys of their own too.

 

 

Excellent post by Cara and you both...

This is life - any change has to initiate - another change. It is a cascade of events. Whether this will be only good or mixed bag of feelings, it's up to us: human touch as The Boss would say: 

 

These are all human feelings. I also had a part of that in my life - still have. Some famous fights were started just because my boyfriend and I didn't understand each other mutually at that certain moment. Have a faith! That little tiny unphysiological process we can't explain but yet we appreciate. We even invoke it...

[kbetz63]

Hang in there Nikki. I know it's rough. When they turned on my right CI all I heard was squeaking noises, felt like everyone was Mickey & Minnie Mouse. Not a happy camper, but music was my therapy and wow, did it help.

Today I get my left CI turned on, and while I'm anxious and least I know that eventually I'll hear clearly. Just time, baby steps and loads of patience. You'll get there!

[Hila]

Hi girls..

This is going to be short because I am at work, but I couldn't wait to THANK you so much for your sweet responses and your openness,  

Cara - Big HUG - you have won the poetic message award in my book.  Don't ever hesitate to write me to my e-mail - you are not invasive :)

Mary Beth, Sandy, Ivana and dear Kara, I am taking all you posted right in ,  Thanks for sharing your thoughts,  

Today, I am more optimistic than ever.

walking around, initiating talks with people whenever I feel it clicks right.  I take it as it comes, I hope this is all within the normal function of the CI+brain Combo.  

[Hila]

Kristine, Hi! Music is also my therapy and if I go along with cartoon and R2-D2 sound effect, let me recommend the 80's electronic music- hehe- the CI just could not make "Shake the disease" sound much different :)

[Hila]

Hang in there Nikki. I know it's rough. When they turned on my right CI all I heard was squeaking noises, felt like everyone was Mickey & Minnie Mouse. Not a happy camper, but music was my therapy and wow, did it help.

Today I get my left CI turned on, and while I'm anxious and least I know that eventually I'll hear clearly. Just time, baby steps and loads of patience. You'll get there!

KRISTINE! GOOD LUCK on your activation today!  Looking forward to hear your impression

[Mary Beth]

Best of luck Kristine!