Going for Cochlear Implants
In my tab attached to this blog you will notice "CI Journey". This tab contains the updates on my journey to getting my first implant. Since I haven't been blogging as much, life can get busy for this single mom and even I need to take a break from cyberspace as it can get a bit overwhelming.
For those of you who read my blogs, I am a single hard of hearing mom who is becoming late deafen. I originally lost my hearing at the ripe old age of four - the age of language development - due to an "unknown" childhood illness. Since then I have been wearing hearings aids for a good 25 years now. I did not go to any special schools growing up. I had to deal with regular schools- trust me they had no idea how accommodate a hard of hearing student. Keep in mind, when I started Pre-K it was 1987-1988 before the ADA (American Disabilities Act) of 1991 came into play.
I can't say I gained many friends during my childhood. It was not easy to tell if the other kids were just being nice to me or using me to impress their friends (being made fun of) or just not interested in having me as a friend. Friendships that I see last from those times with my peers, I can't say 100% that I have that. Yes, being like literally the only hard of hearing kid in my school, played a huge role in how I connected with everyone around me. I felt more understood by the adults who understood where I was than my peers who worried about fitting in, making friends, and trying to impress their peers that they too can be just like those who are "cool". I took life a little bit more serious because I had to work hard to understand not only my surroundings but "fit" into the "hearing world's" ideal image. So yes, I did not quite feel like myself growing up.
I did not see myself going far in life because of conversations I heard as a young child. Some spoke of low expectations from me because my hearing loss was gradually going to get worst as I got older. It made me feel bad of course, but I decided to do something about that. I worked hard in school and did my best to get good grades. I started to accept responsibilities and learn how "hearing" people got things done. I watched how many interacted and noticed the "why" in the cause and effects of many situations. I learned that while I may not be able to hear the whole world, my eyes became my ears. My eyes soon made me a watcher of all things around me. Not bad, right? Well, anyhow, I founded myself being a loner and befriending the ones many did not want to be bothered with. I learned of their stories and why they were they way they were. I did not judge them for I understood the feeling of being judged by others. I accepted those for who they were and allowed them to grow and become confident in everything they did. Of course I made a few good friends, but as they say, time can pull us apart and lead us into separate directions. Indeed, time did.
On the family end of things, it was not "easy". I did not know who was who in my family, I was so confused. I got cousins, but couldn't make the connections. And to be honest, I'm damn near 29 years old and just learning about my family tree. I wished I could have heard who was who growing up. But I guess everyone got the impression I understood them with my hearing aids on, when that was sooooo not the case at all. All I did was just nodded in agreement when I was spoken to, when in all reality I did not understand one word. I was just being polite in my own ways. Now as an adult, I felt like I lack on my family side because of the fact I did not know who else was remaining in the whole family altogether, so naturally I just felt alone after my mother passed. My father was not around and my grandma only had guardianship of me til I was 16. Technically, at 16 I was just learning how to handle my own medical, banking and more, even though I was still living at home. Mind you, I was balancing out my grandmother's checkbooks years before I even turned 16. So I had some practice in the real life area of life. Hence, the reason why I appeared to be more matured. Now that I am learning who is who, I feel a bit better but still feel like I missed out on a lot of good relationships with my cousins. I do not blame them for they did not know, but life can get busy and sometimes families, especially big ones, can't keep up with everyone. Thanks to facebook, I am connected to old friends of the family and family members.
School was my favorite in terms of academics. I also participated in outdoors and indoors track and cross-country. I participated in the arts- music, performance and visual. I learned about four instruments - clarinet, viola, piano, and harmonica. No wait, five instruments if you count hand-bells. So how does someone with hearing aids hear their own music? Practice in a room by yourself and you learn that the count, the tempo, and sounds all merge together with the right count. Music may be a challenge, but reading music and understanding it, is a gift in itself. Many I know played by ear, learning to read music does not come easy to many, it can be a challenge at times but once you learn the basics, no problem at all. It just flows through you and within you. Just recently I learned of a deaf drummer, two actually, and I hate that I am bad with names and recalling them, but they are both females and from what I gathered, been around for a while now. They are both well-known for how well they have mastered the art of percussion. Following the vibrations of sounds is an art in itself. If I was ask who would be a better listener, the deaf or the hearing...my answer would be the deaf. To educate you, I will try to find the link to these two drummers I learned of recently myself. Having a disability, does not mean no one is capable. It just means many of us who have a "disability" have to learn new ways of doing things to stay "functional" in this society and we are capable of succeeding just as much as someone who does not have a disability. Overcoming obstacles we face, is a huge success in itself. It's not about getting a title, its about breaking down barriers and being the ones who fought for it. Its about being treated as equals and letting the world know, "Yes We Can!" On the individual level though, I would take it to heart because I did not do it just for me, I knew I would also be a good influence in how people view a hard of hearing individual. No one is ever the same, but when you share your stories, you feel more connected to those within the same community of the hard of hearing(hoh), deaf, and the "in between". The best part is, no matter what your background is, everyone is embraced. :)
Since I am becoming late deafen, meaning I am losing all of my natural hearing remaining with my hearing aids. I decided it is now a good time to get my first implant while my son (who is four) is still young. Technically, I am functionally deaf. I can hear a little bit with my hearing aids, but without them I am considered deaf. I have never really been exposed to the deaf population up til now and so I will feel a bit left out when I do come into contact with those who grew up mastering ASL. It can get a bit overwhelming when you try to communicate but knowing a few who understand the transitioning is very helpful. Its like there will always be someone who can understand exactly where you are. Which remind me, I got to shoot a few people an email!
There are three companies who make Cochlear Implants (that I know of). They are : Advance Bionics, Cochlear Americas and Med-El. The technology in all of them are all geared towards the same concept - To offer those with sever to profound hearing loss another chance at hearing again in a new way. I have spent the last six to seven years, researching and reading up on all of the implants. Let me tell you, this is not a decision to take lightly, it is one that requires understanding of the process and the pros and cons to getting an implant or implants. You must also understand what is required of you and of those who will be involved in the process. So really, it is a decision that requires a lot of thought and researching.
While the technology is amazing today, involving all the cochlear implants, its almost impossible to decided which one is more promising than the other. However, to make it simple for me, I decided to go with an implant that not gives me only control over the programs, but access to fit into the type of lifestyle I lead, which is a very physically active lifestyle. Plus, I love to listen to music again so the ability to plug into a mp3 player (which I never really owned in my life). There are two companies who offer what I want, but only one can be chosen. Since I am not big about swimming or being splashed at or on, waterproof appeals to me but at the same time it doesn't. Water resistance implants are based on a rating system. I will add that in, the rating system as I look it up again. It was explained to me by five people, a few of them implant users themselves. So really I got to read it again to make sure I get it right in this piece, so check back in to check out the update of this specific blog.
So what is the process that I have gone through so far? Well, first you have to make sure your insurance is going to cover the cost of the implants altogether. I would suggest you call your insurance company and ask what is their guidelines for getting the implant(s) and what is required of you to do. Also you want to make sure your insurance covers the rehab aspect of it, which occurs after the surgery and activation. On the three company's websites, you can google them (I will add them at the end as well), they will have a link to look up the speech and hearing centers that work with their products. Also, if interested, look up to see if there is a local Implant Group, attend to their meetings and find out as much information as you can. Because I learned my original insurance, which I loved, did not cover the entire cochlear implant process in the Buffalo, NY area (yet. I hope they changed it) but covered the the rehab in Rochester, NY, I had to switch my insurance unfortunately. With a new insurance company, meant changing up my primary doctor and a few others, another pain in the behind I say. But I needed the insurance to cover everything in Buffalo, NY since I do not own a car to be traveling back and forth between Buffalo and Rochester, NY. That would have been too much. So definitely start with your insurance company first. Second, go to the companies websites check out their customer services and what they offer to those who cannot financially afford the implants. There are programs, based on location of course, that would help off-set the cost on the families or individuals who have been approved to be a great candidacy for receiving the benefits of the implant(s). I noticed with the programs, they are not offered everywhere and you really have to do your research to find them. The companies also have financial assistance available as well and are willing to work with your insurance company. You want to assure the relationship you have with your insurance is a good one.
Now that the insurance aspect of it is done, it is time for the referral process. This is when your primary doctor writes up a referral for a Cochlear Implant Evaluation, which in my case meant meeting up with an ENT (Ears, Nose and Throat) doctor before getting the referral for my Hearing and Speech Evaluation for determining the candidacy for cochlear implant(s) from the ENT doctor. Keep in mind this is the step I had to do, in accordance to how my insurance company worked. Plus, its a slow process with my type of insurance so it does tend to drag out a bit. It took a few months to schedule an appointment with the Speech and Hearing Center in Buffalo. This was due to unexpected events happening on both sides. However, I eventually got the Hearing and Speech Evaluation done and was approved to go forward by the ENT doctor.
Now I will meet with the ENT doctor at the Women's and Children's Hospital ENT Clinic, August 15th, 2012. I believe what I should be expecting is a script to get the MRI/CAT scan done. I am hoping that this is also a day when I can find out when the surgery will occur. I have not been good at retaining information spoken to me in a while, so I know someone mentioned to me, after they got the go-ahead they had the scans and the surgery scheduled within weeks of each other. Like I mentioned earlier, I have to do things according to my insurance's guidelines. Health insurance can seriously be a pain here in the USA. I like how the UK and Canada has a universal system. Everyone is covered. At least two countries in this world know how to treat its people and care for them, in my opinion of course.
I am hoping September will be the month of the surgery as I am aiming to be bilaterally implanted by the time I turn 30 next Halloween 2013. It is my goal, to get my life back on track by hearing once again. Being able to communicate and do it without struggling so much. I will struggle in the beginning during the rehab process because the brain must be re-trained in learning how to recognize sounds again from a new technology. Some people can hear right away, some take time. Every individual is different, so no one person is going to have the same experience with the implants they have chosen. You may hear similar experiences, but you'll learn everyone's hearing ability is different. I have not mentioned the company I have chosen to go with yet, but when I do it will be when I get activated.
I'm not nervous as this will be surgery number four for me. I had three surgeries in less than a year right after my son was born. Crazy, right? But I'm good and healthy now. I'm not a worrier for it drives me nuts. I will gather those who want to help and send out the guidelines to them based upon what I know they will do and assume and correct them in the process. Mind you, I will always remind anyone, "I'm a big girl and I can handle myself well." Meanwhile, its easy to look at me and my tiny frame and be like, "How does she do it?" It's all tied into having faith and trusting that God got you.
Knowing what you are heading into and getting yourself into, can help relieved the stress and worries of something going wrong. Like with any surgery, there is always a risk. Knowing who is performing the surgery and meeting the patients who had them can also be a great way of becoming comfortable with their expertise in the field. So, breath and relax. I may be a single mom, but I won't let it stop me from anything. If I can improve my chances in life, I can improve my overall situation as well. It may take some work, but I am willing to go the distance. Like any former competitor in the field of runners, we understand what it means to really go the distance. "No pain, no gain," a motto many athletes are familiar with and some even live by it. Yet, this motto can have its downside if you don't pay attention to any warning signs of potentially fatal complications brought on by intense training or any health warning signs that could prevent injuries or worst. Which it is why the motto, "Play it Smart" sounds much better.
So I will end this blog here and add in the links to the companies I have listed.
Cochlear Americas
Advanced Bionics
Med El
Buffalo Implant Group - This is the group I am a member of.
Buffalo Hearing and Speech Center - This is where Cochlear Implant patients go to, most of them according to my knowledge.
The IP Rating Explained - this will explain how water resistance the Cochlear Implant is.
I will try to add the links to my page so everyone can have an easier access to them. Have a great day!
For those of you who read my blogs, I am a single hard of hearing mom who is becoming late deafen. I originally lost my hearing at the ripe old age of four - the age of language development - due to an "unknown" childhood illness. Since then I have been wearing hearings aids for a good 25 years now. I did not go to any special schools growing up. I had to deal with regular schools- trust me they had no idea how accommodate a hard of hearing student. Keep in mind, when I started Pre-K it was 1987-1988 before the ADA (American Disabilities Act) of 1991 came into play.
I can't say I gained many friends during my childhood. It was not easy to tell if the other kids were just being nice to me or using me to impress their friends (being made fun of) or just not interested in having me as a friend. Friendships that I see last from those times with my peers, I can't say 100% that I have that. Yes, being like literally the only hard of hearing kid in my school, played a huge role in how I connected with everyone around me. I felt more understood by the adults who understood where I was than my peers who worried about fitting in, making friends, and trying to impress their peers that they too can be just like those who are "cool". I took life a little bit more serious because I had to work hard to understand not only my surroundings but "fit" into the "hearing world's" ideal image. So yes, I did not quite feel like myself growing up.
I did not see myself going far in life because of conversations I heard as a young child. Some spoke of low expectations from me because my hearing loss was gradually going to get worst as I got older. It made me feel bad of course, but I decided to do something about that. I worked hard in school and did my best to get good grades. I started to accept responsibilities and learn how "hearing" people got things done. I watched how many interacted and noticed the "why" in the cause and effects of many situations. I learned that while I may not be able to hear the whole world, my eyes became my ears. My eyes soon made me a watcher of all things around me. Not bad, right? Well, anyhow, I founded myself being a loner and befriending the ones many did not want to be bothered with. I learned of their stories and why they were they way they were. I did not judge them for I understood the feeling of being judged by others. I accepted those for who they were and allowed them to grow and become confident in everything they did. Of course I made a few good friends, but as they say, time can pull us apart and lead us into separate directions. Indeed, time did.
On the family end of things, it was not "easy". I did not know who was who in my family, I was so confused. I got cousins, but couldn't make the connections. And to be honest, I'm damn near 29 years old and just learning about my family tree. I wished I could have heard who was who growing up. But I guess everyone got the impression I understood them with my hearing aids on, when that was sooooo not the case at all. All I did was just nodded in agreement when I was spoken to, when in all reality I did not understand one word. I was just being polite in my own ways. Now as an adult, I felt like I lack on my family side because of the fact I did not know who else was remaining in the whole family altogether, so naturally I just felt alone after my mother passed. My father was not around and my grandma only had guardianship of me til I was 16. Technically, at 16 I was just learning how to handle my own medical, banking and more, even though I was still living at home. Mind you, I was balancing out my grandmother's checkbooks years before I even turned 16. So I had some practice in the real life area of life. Hence, the reason why I appeared to be more matured. Now that I am learning who is who, I feel a bit better but still feel like I missed out on a lot of good relationships with my cousins. I do not blame them for they did not know, but life can get busy and sometimes families, especially big ones, can't keep up with everyone. Thanks to facebook, I am connected to old friends of the family and family members.
School was my favorite in terms of academics. I also participated in outdoors and indoors track and cross-country. I participated in the arts- music, performance and visual. I learned about four instruments - clarinet, viola, piano, and harmonica. No wait, five instruments if you count hand-bells. So how does someone with hearing aids hear their own music? Practice in a room by yourself and you learn that the count, the tempo, and sounds all merge together with the right count. Music may be a challenge, but reading music and understanding it, is a gift in itself. Many I know played by ear, learning to read music does not come easy to many, it can be a challenge at times but once you learn the basics, no problem at all. It just flows through you and within you. Just recently I learned of a deaf drummer, two actually, and I hate that I am bad with names and recalling them, but they are both females and from what I gathered, been around for a while now. They are both well-known for how well they have mastered the art of percussion. Following the vibrations of sounds is an art in itself. If I was ask who would be a better listener, the deaf or the hearing...my answer would be the deaf. To educate you, I will try to find the link to these two drummers I learned of recently myself. Having a disability, does not mean no one is capable. It just means many of us who have a "disability" have to learn new ways of doing things to stay "functional" in this society and we are capable of succeeding just as much as someone who does not have a disability. Overcoming obstacles we face, is a huge success in itself. It's not about getting a title, its about breaking down barriers and being the ones who fought for it. Its about being treated as equals and letting the world know, "Yes We Can!" On the individual level though, I would take it to heart because I did not do it just for me, I knew I would also be a good influence in how people view a hard of hearing individual. No one is ever the same, but when you share your stories, you feel more connected to those within the same community of the hard of hearing(hoh), deaf, and the "in between". The best part is, no matter what your background is, everyone is embraced. :)
Since I am becoming late deafen, meaning I am losing all of my natural hearing remaining with my hearing aids. I decided it is now a good time to get my first implant while my son (who is four) is still young. Technically, I am functionally deaf. I can hear a little bit with my hearing aids, but without them I am considered deaf. I have never really been exposed to the deaf population up til now and so I will feel a bit left out when I do come into contact with those who grew up mastering ASL. It can get a bit overwhelming when you try to communicate but knowing a few who understand the transitioning is very helpful. Its like there will always be someone who can understand exactly where you are. Which remind me, I got to shoot a few people an email!
There are three companies who make Cochlear Implants (that I know of). They are : Advance Bionics, Cochlear Americas and Med-El. The technology in all of them are all geared towards the same concept - To offer those with sever to profound hearing loss another chance at hearing again in a new way. I have spent the last six to seven years, researching and reading up on all of the implants. Let me tell you, this is not a decision to take lightly, it is one that requires understanding of the process and the pros and cons to getting an implant or implants. You must also understand what is required of you and of those who will be involved in the process. So really, it is a decision that requires a lot of thought and researching.
While the technology is amazing today, involving all the cochlear implants, its almost impossible to decided which one is more promising than the other. However, to make it simple for me, I decided to go with an implant that not gives me only control over the programs, but access to fit into the type of lifestyle I lead, which is a very physically active lifestyle. Plus, I love to listen to music again so the ability to plug into a mp3 player (which I never really owned in my life). There are two companies who offer what I want, but only one can be chosen. Since I am not big about swimming or being splashed at or on, waterproof appeals to me but at the same time it doesn't. Water resistance implants are based on a rating system. I will add that in, the rating system as I look it up again. It was explained to me by five people, a few of them implant users themselves. So really I got to read it again to make sure I get it right in this piece, so check back in to check out the update of this specific blog.
So what is the process that I have gone through so far? Well, first you have to make sure your insurance is going to cover the cost of the implants altogether. I would suggest you call your insurance company and ask what is their guidelines for getting the implant(s) and what is required of you to do. Also you want to make sure your insurance covers the rehab aspect of it, which occurs after the surgery and activation. On the three company's websites, you can google them (I will add them at the end as well), they will have a link to look up the speech and hearing centers that work with their products. Also, if interested, look up to see if there is a local Implant Group, attend to their meetings and find out as much information as you can. Because I learned my original insurance, which I loved, did not cover the entire cochlear implant process in the Buffalo, NY area (yet. I hope they changed it) but covered the the rehab in Rochester, NY, I had to switch my insurance unfortunately. With a new insurance company, meant changing up my primary doctor and a few others, another pain in the behind I say. But I needed the insurance to cover everything in Buffalo, NY since I do not own a car to be traveling back and forth between Buffalo and Rochester, NY. That would have been too much. So definitely start with your insurance company first. Second, go to the companies websites check out their customer services and what they offer to those who cannot financially afford the implants. There are programs, based on location of course, that would help off-set the cost on the families or individuals who have been approved to be a great candidacy for receiving the benefits of the implant(s). I noticed with the programs, they are not offered everywhere and you really have to do your research to find them. The companies also have financial assistance available as well and are willing to work with your insurance company. You want to assure the relationship you have with your insurance is a good one.
Now that the insurance aspect of it is done, it is time for the referral process. This is when your primary doctor writes up a referral for a Cochlear Implant Evaluation, which in my case meant meeting up with an ENT (Ears, Nose and Throat) doctor before getting the referral for my Hearing and Speech Evaluation for determining the candidacy for cochlear implant(s) from the ENT doctor. Keep in mind this is the step I had to do, in accordance to how my insurance company worked. Plus, its a slow process with my type of insurance so it does tend to drag out a bit. It took a few months to schedule an appointment with the Speech and Hearing Center in Buffalo. This was due to unexpected events happening on both sides. However, I eventually got the Hearing and Speech Evaluation done and was approved to go forward by the ENT doctor.
Now I will meet with the ENT doctor at the Women's and Children's Hospital ENT Clinic, August 15th, 2012. I believe what I should be expecting is a script to get the MRI/CAT scan done. I am hoping that this is also a day when I can find out when the surgery will occur. I have not been good at retaining information spoken to me in a while, so I know someone mentioned to me, after they got the go-ahead they had the scans and the surgery scheduled within weeks of each other. Like I mentioned earlier, I have to do things according to my insurance's guidelines. Health insurance can seriously be a pain here in the USA. I like how the UK and Canada has a universal system. Everyone is covered. At least two countries in this world know how to treat its people and care for them, in my opinion of course.
I am hoping September will be the month of the surgery as I am aiming to be bilaterally implanted by the time I turn 30 next Halloween 2013. It is my goal, to get my life back on track by hearing once again. Being able to communicate and do it without struggling so much. I will struggle in the beginning during the rehab process because the brain must be re-trained in learning how to recognize sounds again from a new technology. Some people can hear right away, some take time. Every individual is different, so no one person is going to have the same experience with the implants they have chosen. You may hear similar experiences, but you'll learn everyone's hearing ability is different. I have not mentioned the company I have chosen to go with yet, but when I do it will be when I get activated.
I'm not nervous as this will be surgery number four for me. I had three surgeries in less than a year right after my son was born. Crazy, right? But I'm good and healthy now. I'm not a worrier for it drives me nuts. I will gather those who want to help and send out the guidelines to them based upon what I know they will do and assume and correct them in the process. Mind you, I will always remind anyone, "I'm a big girl and I can handle myself well." Meanwhile, its easy to look at me and my tiny frame and be like, "How does she do it?" It's all tied into having faith and trusting that God got you.
Knowing what you are heading into and getting yourself into, can help relieved the stress and worries of something going wrong. Like with any surgery, there is always a risk. Knowing who is performing the surgery and meeting the patients who had them can also be a great way of becoming comfortable with their expertise in the field. So, breath and relax. I may be a single mom, but I won't let it stop me from anything. If I can improve my chances in life, I can improve my overall situation as well. It may take some work, but I am willing to go the distance. Like any former competitor in the field of runners, we understand what it means to really go the distance. "No pain, no gain," a motto many athletes are familiar with and some even live by it. Yet, this motto can have its downside if you don't pay attention to any warning signs of potentially fatal complications brought on by intense training or any health warning signs that could prevent injuries or worst. Which it is why the motto, "Play it Smart" sounds much better.
So I will end this blog here and add in the links to the companies I have listed.
Cochlear Americas
Advanced Bionics
Med El
Buffalo Implant Group - This is the group I am a member of.
Buffalo Hearing and Speech Center - This is where Cochlear Implant patients go to, most of them according to my knowledge.
The IP Rating Explained - this will explain how water resistance the Cochlear Implant is.
I will try to add the links to my page so everyone can have an easier access to them. Have a great day!
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