CI Journey: What it's like a year and a half later
As I have been trying to play catch up, life tends to get busy and obviously I'm still trying to catch up. I am usually responding or answering questions among others on FB in regards to the CIs (Cochlear Implant(s)) and HAs (Hearing Aid(s)) but I know I haven't really been on much. So my apologies.
I was having issues with my nine and a half year old computer and it kept crashing on me. So when I started to response or work on a blog or tweet or to even try to type up something in the Cochlear Community - my computer went hay-wired on me! So it has been very frustrating to not be able to participate fully but to do so here and there. Now, I have a working refurbished Dell tower, which I honestly didn't want to put out the money for, but since I do graphic designs on the side for friends who want me to help them out and I also write - I needed my programs to be fully functional and uninterrupted. I've only had it for a few days now, so here hoping that I can be able to do what I need to be doing.
As I have been reading questions commonly asked on social media and in the Cochlear Community (yes, I followed the topics trending), my goal in this blog is to contribute my response to them.
When it comes to activation, go in with LOW EXPECTATIONS! Yes, it's a great time to be excited and to received a new way to hear sounds again, but everyone WILL NOT HAVE THE SAME RESULTS! Depending on how long you have been in the sever to profoundly deaf hearing range, that will most likely determine how long it will take you to learn how to recognize sounds again. Now, there are some people who say they were able to recognize speech right away - now keep in mind when they say "speech" it's HOW it sounds to THEM may be robotic at first but not quiet "normalized" yet. Is it possible to recognize speech? I say yes, but it really does depend on the individual. Not everyone will have the ability to pick it up right away, but in due time speech will come and when it does, it will take some getting use to and over time along with each mapping appointment sounds will become more "normalize." So do not become discourage if sounds and speech are not coming in right away. DO NOT COMPARE YOURSELF TO OTHERS! This is YOUR JOURNEY and it will require that you be PATIENT and UNDERSTANDING of YOURSELF. So be GOOD to YOURSELF and cut yourself some slack if you are struggling.
At my activation (which I did not record), the only thing I could hear was a clap. I couldn't hear speech or any other sounds during my activation appointment. To be honest, I went in with LOW EXPECTATIONS as I was told and I was not disappointed at all. After doing research for six years (yes, six), before deciding on the CI, I knew that once the surgery was done, the brain would have to readjust itself to the new technology simulating the cochlea's electrical signals to the auditory nerves. What many fail to realize is that any kind of implant that sends electrical signals to a vital organ in the body requires an adjustment period and close monitoring. Because of our individualistic biological make-up, it is expected by professionals to see different results across the board in different people. Yes, it also means they are aware of similarities and differences in each individual patient that they see and treat. So, when I say cut yourself some slack if you're are struggling and comparing yourself to where others are in their CI journey, remember some may have been hearing for a long time and suddenly loss all their hearing, some may have been wearing their CI for a lot longer then you and some just may have a struck of luck if anything. But you will get there!
When it comes to getting the best out of your CI, work closely with your audiologist and CI Team. Let them know how you are hearing, what you are hearing, what is working and what isn't working - let them know any concerns you may have in your listening environments because they are such a great resource in offering tips and advice in how to navigate the world of constant sounds. So don't give up if you are three months post-activated! It took me four to six months to get used to hearing speech at 65% and I'm still working on it because I don't have all the time in the world to listen to audiobooks or listening activities. In all reality, I have to rely on my natural environment as a single mom. I'm either out running errands, meeting up with good friends, young and old, catching up with chores and helping my son do his PHONICS which is perfect for me since he pretty much is teaching me the sounds I'm not hearing! LOL but it's such a unique experience for me because my son can read words that go up to the third grade level and his reading skills are phenomenal! He will be entering first grade in the fall of 2014! So I am a very proud mama! He is a hearing child and my CODA/KODA.
Now you gotta be able to take the cue from yourself to know and accept your limits. You will also learn how to explore beyond those limits and push the sound barriers away. Listening can take a lot out of you and if you are not careful, sounds will not be as clear if your brain gets too tired. So yes, you will probably find yourself taking breaks from time to time from the CI to give your brain a rest. I will push my limits when I feel I can do so without draining myself completely. So don't be hard on yourself in the beginning if you are taking frequent breaks. I had to take breaks because I wasn't used to the magnet just yet, plus I was a bit sore around the incision site - I had to keep readjusting the magnet to find the right "comfort" so that it didn't
bother me so much, it took some time. I also have very thick hair, so anyone with thick hair will understand the struggle with the magnet and always trying to constantly find a "comfortable" zone to rest the "headpiece" aspect of the processor. I also took breaks due to frequent headaches and migraines. Now naturally, I suffered from headaches and migraines growing up and it intensified in the early part of my CI journey so I was careful about how long I wore my processor and how much time I spent "ACTIVELY" listening vs. just naturally listening. It is important that you know your listening habits and be aware of how you are listening because it can help out a lot when it comes to describing HOW you are hearing with your CI.
I also wear a hearing aid in my left ear. So for those who are Bimodal (CI/HA users), it will all boil down to balancing how you hear sounds. Now, for me, I wear both all the time. In the beginning, after I got my CI, I wore my CI by itself only in the house. But when I went out I wore both. Now because my son's voice is high pitched, I am kinda forced to wear my hearing aid because high frequencies are not my comfortable frequencies to deal with and never has been. So if you figured, yes, during my mapping session my high frequency is nearly shut off but it's "up" just enough to tolerate it comfortably. So yes, you do have to make sure your mapping is comfortable for you and for some of us, like myself, we gotta work on developing a "tolerance" for high frequencies which I will say isn't easy as I have been mostly deaf to those for years! It really does make a different where you are comfortable and where you struggle in terms of frequencies. So do not get discourage, it is bound to take some getting used to and it won't happen overnight, but its like learning how to build something for the first time and your brain is like that, as an adult it may take some time because everything starts to slow down at one point or another, but you gotta be PROACTIVE about it.
What I like about wearing the hearing aid is being able to retain the bass for sounds. The CI does take some getting used to, especially with music. What I love about my CI is that I can use my audio cables to connect directly to my computer and other devices to listen to music, whereas I would have to wear a headphone big enough to go over my hearing aid (without it squealing) to listen to music. Once upon a time I was a music student so I have experience in playing hand bells, clarinet, viola, harmonica, piano, and singing. Who says you can't learn music because you are hard of hearing? You CAN learn music and my secret was learning the counts and if you got the counts right, the music would flow very smoothly. When it came to singing, I learned through vibration and listening closely to how notes were sung and "mimic" them. There are clever ways to learn sounds, you just gotta get creative! Find what works for you!
Overtime, everything will come together and when it does, you will probably not even notice you are wearing your CI at times. I know on some days, when I am listening with ease it is because I am well-rested and alert. On the days I am struggling, I may be down on my last human battery in terms of energy, but I just accepted the fact that I will always have my good and bad days, regardless.
When it comes to medically related issues, such as experiencing soreness, redness or residual stitches around the incision site - PLEASE, PLEASE, PLEASE CALL YOUR SURGEON! DO NOT JUMP ONLINE TO GET ANSWERS! Many of the group administrators on FB have posted several times in their groups to not ask medically related questions because no one in the group is medically qualified to give a proper diagnose or advice. If you are unsure of the issue being medical or not, do not be afraid to call your surgeon's office to ask the nurse on-call. They are medical professionals who know your medical history better and they can automatically tell you what to do next vs. going on FB or other sites for medically related answers that could be misleading and dangerous even. While I understand, there are some people who have to take a long drive to see their surgeon or ENT specialist, it is very important that you understand that no one wants to be held liable for giving you the wrong medical advice online and so when everyone tells you to call your surgeon, DO IT! It may not be anything serious, but it's better to be safe than sorry later. For me, because I was sick all winter this year, I had to call my ENT specialist who is also my CI Surgeon because I was dealing with constant back to back sinus infections and it was affecting how I was hearing with my CI ear. I didn't go online for answers, I contacted my audiologist via email first and she told me to call my ENT doctor to make an appointment to make sure it was nothing serious. Then I posted about my ongoing medical experience online and stated how I was working with my primary, my audiologist and my ENT doctor to ensure everything went smoothly. But I must say, it's nice to be able to actually hear speech once again and sounds in a pleasant manner. When you got head colds, sinus issues, and the flu - fluid is bound to build up in the ear causing sounds to be muffled either way. So it's always good to turn to the medical profession FIRST! So do not get offended if no one wants to give you medical advice online...use common sense to know that only your surgeon, your primary and your audiologist know your medical history better and it's better for them to help you recover and seek the proper treatment for your overall well-being. Everyone cares for each other online - but we do not want to hear or see poorly given medical advice get taken seriously and end up with a poor risky result. So for your own good, anything medically related refer to your medical team who know your medical history. If you are just asking to seek a second opinion on something and you want to know where you can find another good audiologist or ENT specialist in your area - then I can see that being within reason enough to ask for another doctor or specialist in your local or nearby area. Make sure you also check in with your insurance company as well, as they may also be able to help you locate another doctor, audiologist or even an ENT specialist for your needs.
If you wish to write about your experience with a medical issue, please use a disclaimer to let others know this is your own personal experience and that it does not apply to everyone. You are just writing to inform others of your experience in hopes that someone can learn something new from it and possibly explore the issue further.
So I will end this with be patience and kind to yourself. This is a journey and it's not a race. I will be going back to the testing booth in September 2014 to find out where I am with my speech discrimination. I have had my fair share of frustrations and amazement but by the end of the day it's all a constant learning experience and it's one that I take in strides. Like life teaches us, so does our hearing journey. Peace!
I was having issues with my nine and a half year old computer and it kept crashing on me. So when I started to response or work on a blog or tweet or to even try to type up something in the Cochlear Community - my computer went hay-wired on me! So it has been very frustrating to not be able to participate fully but to do so here and there. Now, I have a working refurbished Dell tower, which I honestly didn't want to put out the money for, but since I do graphic designs on the side for friends who want me to help them out and I also write - I needed my programs to be fully functional and uninterrupted. I've only had it for a few days now, so here hoping that I can be able to do what I need to be doing.
As I have been reading questions commonly asked on social media and in the Cochlear Community (yes, I followed the topics trending), my goal in this blog is to contribute my response to them.
At my activation (which I did not record), the only thing I could hear was a clap. I couldn't hear speech or any other sounds during my activation appointment. To be honest, I went in with LOW EXPECTATIONS as I was told and I was not disappointed at all. After doing research for six years (yes, six), before deciding on the CI, I knew that once the surgery was done, the brain would have to readjust itself to the new technology simulating the cochlea's electrical signals to the auditory nerves. What many fail to realize is that any kind of implant that sends electrical signals to a vital organ in the body requires an adjustment period and close monitoring. Because of our individualistic biological make-up, it is expected by professionals to see different results across the board in different people. Yes, it also means they are aware of similarities and differences in each individual patient that they see and treat. So, when I say cut yourself some slack if you're are struggling and comparing yourself to where others are in their CI journey, remember some may have been hearing for a long time and suddenly loss all their hearing, some may have been wearing their CI for a lot longer then you and some just may have a struck of luck if anything. But you will get there!
When it comes to getting the best out of your CI, work closely with your audiologist and CI Team. Let them know how you are hearing, what you are hearing, what is working and what isn't working - let them know any concerns you may have in your listening environments because they are such a great resource in offering tips and advice in how to navigate the world of constant sounds. So don't give up if you are three months post-activated! It took me four to six months to get used to hearing speech at 65% and I'm still working on it because I don't have all the time in the world to listen to audiobooks or listening activities. In all reality, I have to rely on my natural environment as a single mom. I'm either out running errands, meeting up with good friends, young and old, catching up with chores and helping my son do his PHONICS which is perfect for me since he pretty much is teaching me the sounds I'm not hearing! LOL but it's such a unique experience for me because my son can read words that go up to the third grade level and his reading skills are phenomenal! He will be entering first grade in the fall of 2014! So I am a very proud mama! He is a hearing child and my CODA/KODA.
Now you gotta be able to take the cue from yourself to know and accept your limits. You will also learn how to explore beyond those limits and push the sound barriers away. Listening can take a lot out of you and if you are not careful, sounds will not be as clear if your brain gets too tired. So yes, you will probably find yourself taking breaks from time to time from the CI to give your brain a rest. I will push my limits when I feel I can do so without draining myself completely. So don't be hard on yourself in the beginning if you are taking frequent breaks. I had to take breaks because I wasn't used to the magnet just yet, plus I was a bit sore around the incision site - I had to keep readjusting the magnet to find the right "comfort" so that it didn't bother me so much, it took some time. I also have very thick hair, so anyone with thick hair will understand the struggle with the magnet and always trying to constantly find a "comfortable" zone to rest the "headpiece" aspect of the processor. I also took breaks due to frequent headaches and migraines. Now naturally, I suffered from headaches and migraines growing up and it intensified in the early part of my CI journey so I was careful about how long I wore my processor and how much time I spent "ACTIVELY" listening vs. just naturally listening. It is important that you know your listening habits and be aware of how you are listening because it can help out a lot when it comes to describing HOW you are hearing with your CI.
I also wear a hearing aid in my left ear. So for those who are Bimodal (CI/HA users), it will all boil down to balancing how you hear sounds. Now, for me, I wear both all the time. In the beginning, after I got my CI, I wore my CI by itself only in the house. But when I went out I wore both. Now because my son's voice is high pitched, I am kinda forced to wear my hearing aid because high frequencies are not my comfortable frequencies to deal with and never has been. So if you figured, yes, during my mapping session my high frequency is nearly shut off but it's "up" just enough to tolerate it comfortably. So yes, you do have to make sure your mapping is comfortable for you and for some of us, like myself, we gotta work on developing a "tolerance" for high frequencies which I will say isn't easy as I have been mostly deaf to those for years! It really does make a different where you are comfortable and where you struggle in terms of frequencies. So do not get discourage, it is bound to take some getting used to and it won't happen overnight, but its like learning how to build something for the first time and your brain is like that, as an adult it may take some time because everything starts to slow down at one point or another, but you gotta be PROACTIVE about it.
What I like about wearing the hearing aid is being able to retain the bass for sounds. The CI does take some getting used to, especially with music. What I love about my CI is that I can use my audio cables to connect directly to my computer and other devices to listen to music, whereas I would have to wear a headphone big enough to go over my hearing aid (without it squealing) to listen to music. Once upon a time I was a music student so I have experience in playing hand bells, clarinet, viola, harmonica, piano, and singing. Who says you can't learn music because you are hard of hearing? You CAN learn music and my secret was learning the counts and if you got the counts right, the music would flow very smoothly. When it came to singing, I learned through vibration and listening closely to how notes were sung and "mimic" them. There are clever ways to learn sounds, you just gotta get creative! Find what works for you!
Overtime, everything will come together and when it does, you will probably not even notice you are wearing your CI at times. I know on some days, when I am listening with ease it is because I am well-rested and alert. On the days I am struggling, I may be down on my last human battery in terms of energy, but I just accepted the fact that I will always have my good and bad days, regardless.
When it comes to medically related issues, such as experiencing soreness, redness or residual stitches around the incision site - PLEASE, PLEASE, PLEASE CALL YOUR SURGEON! DO NOT JUMP ONLINE TO GET ANSWERS! Many of the group administrators on FB have posted several times in their groups to not ask medically related questions because no one in the group is medically qualified to give a proper diagnose or advice. If you are unsure of the issue being medical or not, do not be afraid to call your surgeon's office to ask the nurse on-call. They are medical professionals who know your medical history better and they can automatically tell you what to do next vs. going on FB or other sites for medically related answers that could be misleading and dangerous even. While I understand, there are some people who have to take a long drive to see their surgeon or ENT specialist, it is very important that you understand that no one wants to be held liable for giving you the wrong medical advice online and so when everyone tells you to call your surgeon, DO IT! It may not be anything serious, but it's better to be safe than sorry later. For me, because I was sick all winter this year, I had to call my ENT specialist who is also my CI Surgeon because I was dealing with constant back to back sinus infections and it was affecting how I was hearing with my CI ear. I didn't go online for answers, I contacted my audiologist via email first and she told me to call my ENT doctor to make an appointment to make sure it was nothing serious. Then I posted about my ongoing medical experience online and stated how I was working with my primary, my audiologist and my ENT doctor to ensure everything went smoothly. But I must say, it's nice to be able to actually hear speech once again and sounds in a pleasant manner. When you got head colds, sinus issues, and the flu - fluid is bound to build up in the ear causing sounds to be muffled either way. So it's always good to turn to the medical profession FIRST! So do not get offended if no one wants to give you medical advice online...use common sense to know that only your surgeon, your primary and your audiologist know your medical history better and it's better for them to help you recover and seek the proper treatment for your overall well-being. Everyone cares for each other online - but we do not want to hear or see poorly given medical advice get taken seriously and end up with a poor risky result. So for your own good, anything medically related refer to your medical team who know your medical history. If you are just asking to seek a second opinion on something and you want to know where you can find another good audiologist or ENT specialist in your area - then I can see that being within reason enough to ask for another doctor or specialist in your local or nearby area. Make sure you also check in with your insurance company as well, as they may also be able to help you locate another doctor, audiologist or even an ENT specialist for your needs.
If you wish to write about your experience with a medical issue, please use a disclaimer to let others know this is your own personal experience and that it does not apply to everyone. You are just writing to inform others of your experience in hopes that someone can learn something new from it and possibly explore the issue further.
 | |
| Life is a journey and like life our hearing journey also has ups and downs. |
Comments
Post a Comment