Activation date scheduled

Just a short post... I have my activation date scheduled for May 23rd! This is the day that the processor is turned on for me and find out what I do 'hear'.

The countdown begins til I get activated, where I will hopefully HEAR.... 3 months 3 days... and counting...

Surgery is scheduled!

I met with the surgeon yesterday. We went over some questions I had and we both agreed that cochlear implant would be ideal for me. I did find out that I will NOT be able to go bilateral right off the bat as previously discussed. Medicare has changed some things and the chances of me getting a second implant is slim to none. That's ok, I will just move forward with the one implant for now and hopefully in the near future I can work to try getting the second implant. In some ways, this actually gave me a sigh of relief. I was really apprehensive about going and doing both ears at the same time, even though I knew it would be for the better to get it out of the way now; one surgery, one recovery, etc. But that silence for 4 or more weeks was what was bothering me. And now, I know I don't even have the option of going bilateral at the moment, I'm relieved in some way that I know I'll still be able to hear with my better ear that I can wear a hearing aid in. But I'm also somewhat mixed up in emotions because I know eventually I'd like to go bilateral. I'll just have to go through surgery and recovery all over again if I'm able to explore going bilateral at a later date.

Surgeon expressed that the fact I was not born deaf and my hearing loss has been progressive over the years, he feels I will benefit very well with a cochlear implant. Especially since I do have 'speech memory'. He let me know that there are certain signs that he has learned over the course of the years he's been doing cochlear implants that lets him 'guess' how a person is going to do with an implant. And for me, he expects that I will do excellent with it. And he was very pleased with my decision to go with Advanced Bionics for my implant. Told me I made an excellent choice and did my homework. So that made me feel even better about my decision for choosing AB.

So anyway, surgery is scheduled! April 26th is the day. I swear when the scheduler gave me the date for surgery, I felt like I lost my stomach. (You know like when you're riding a roller coaster, you reach the top and are ready to go down, that kinda feeling.) It was kind of like 'wow this is really happening'. I'm sure my feelings about this will get more 'scared' the closer I actually get to the surgery date.

I have quite a few things to do prior to surgery to get taken care of. I have to get an MRI done which is scheduled next week Friday. I need to get into my doctors office for a couple vaccinations the surgeon wants me to have soon so that the vaccinations can start 'working' prior to my implantation. Persons with cochlear implants are at higher risk for meningitis. These vaccinations will help curb that from happening. I also have to get scheduled for pre-op clearance from my family doctor, meet the surgeons nurse one week prior to surgery, and meet with the cochlear implant audiologist again to choose the processor I want (as well as some of the accessories).

I'm really glad that my surgeon does not require psych evaluation done for the cochlear implant as I have heard some people had to have a psych evaluation done. I'm sure I would fail that miserably! I don't like being asked questions and be evaluated on your answers... it makes it feel like 'trick questions'.

Until next time...

What I look forward to after getting implanted and activated

I've been asked several times since I've been considering a cochlear implant, what do I look forward to after I'm implanted and finally activated? There are many answers to this, but the first and foremost answer would be to be able to hear my kids as they grow, I do NOT want to have a silent world and not be able to communicate with them. It is apparent that my hearing is degrading fast and I need to do whatever I can in the realms of my world to make that happen!

So in no specific order, I will list what I am looking forward to:

• Watching TV without relying on captions! There are times when I'm watching the news, segments are not captioned because it is a live feed or whatever. So I miss out completely on what was being said.
• Listening to music and actually hear the words. I have always just based my choice on music by hearing it on the radio, if I liked the 'tune' of what I was hearing, I'd investigate what the song name was, who is was sang by and then I'd find a way to get the lyrics. When I was younger, I used to record songs from the radio on my tape cassette recorder and get the lyrics and replay the song over and over again, reading the lyrics and memorizing them that way.
• Being able to communicate with my husband without him having to repeat himself several times. He has a speech impairment that it does make it difficult for me to communicate with him. LOL How in the world did we end up together? A hard of hearing person with a speech impaired person? Ironic, eh?
• Using the phone again and not having people repeat themselves so much. I dread using the phone now for fear I'm not going to hear the person on the other end, but I do it anyway when a situation presents that I cannot just have my husband or another family member/friend help me take care of.
• Being around water and hearing my kids and other enivronmental sounds! Whether for safety reasons or for excitement.
• Date night to the movies! I want to go to the movie theatre and enjoy the movie because I can hear!
• To be able to attend a chuch service and actually HEAR what is being said! I have always felt spiritual, but because of my hearing loss, I've never been able to attend a church and understand the service.

I am sure there are some other small things that I look forward to, but these are like the biggest things that I hope to acheive with getting a cochlear implant. My expectations/goals might be set high, but I'm not going to expect that I will be able to do all of the above. But I will work diligently to learn how to hear my world that best I can. All things are possible, without dreams, nothing can happen.

I want to mention one thing that annoys me...  people tend to think its VOLUME that I need increased to understand something. So they automatically say 'well we can turn up the volume' or 'we can get a surround sound system to help you'. It's not that at all, its clarity and the tone. I try to remember that unless you have hearing loss yourself, people will not understand this. While I can lip read exceptionally well, it is still very hard to be in a meeting type atmosphere and understand anything at all. I struggle during family get togethers to understand everyone. And I rarely recognize when someone is actually trying to talk to me until after they've said my name a few times in a louder tone. In noisy environments, its difficult to communicate with someone in person even when they are right in front of me because I cannot block out background noise to understand the person in front of me. The phone, forget it! I have had so much trouble with the phone for the last couple years, I don't even try anymore.

I'm hoping going through with a cochlear implant will open up my world of hearing. It is NOT something where when the processors are turned on that I will hear immediately (maybe I will, but its rare). Getting a cochlear implant does not mean that I'm no longer hard of hearing/deaf, I will always be deaf... just the cochlear implant is a tool for me to help me understand speech. It is not a magic wand that restores hearing. I will be hearing with my brain, which takes practice and perhaps once my brain starts to comprehend that speech I'm hearing, it will work like magic. It is something I will have to work at. While this all takes time and patience, I will need the people on this journey with me (family & friends) will also need to be patient with me as well.
At the end of the day when I go to bed, I will have to take the processors off, I will be deaf and in complete silence! I worry about not hearing while I'm sleeping because of my kids. I know I have my husband that can help me out in this, its just I feel as in a role as a mother, that I need to be attentive to my kids needs as much as possible without the reliance of someone else. This will probably be one of my biggest struggles. But I hope that by knowing this, that I can prepare myself mentally and prepare my husband to know that he will have to be my ears for me at night. I will most definitely need to get some assistive device that will wake me up to get Jared ready for school. I need to look into those options and check into the costs. Will probably be something that vibrates under my pillow or turning my lights on and off... I do NOT want my husband waking me up every morning by jerking me around. I would seriously get highly irritated over that. It has happened when my hearing aid battery has died and I don't hear the alarm, he shakes me and while it does wake me up, it really startles me. I end up confused til I realize whats going on and then I'm irritated by the way I was woke up. So thinking that I need to be looking for another option that will wake me up when needed.

Talk about superior customer service!!!

Well, after some awesome customer service from Advanced Bionics, the company that I plan to use for my cochlear implant, I'm even more happier with my decision! They have wow'd me to no words to explain how awesome they are!

For the past month, I have met some really awesome folks on a forum that was started by Advanced Bionics. The people I have met on this forum have helped me along thus far by answering questions and giving advice. Ultimately have given me the confidence that I can go through with this cochlear implant without as much fear as I had at the beginning of my journey to making a decision to get a cochlear implant.

I have been looking for a way to explain to my son who is 5 years old about what I am going to be having done. But I wanted to do it in a way that it doesn't make him worry about me and freak out. Anyway, I was told about some material Advanced Bionics has for kids. I was able to get links to a printable coloring book and a video to show my kids. I was also told about a doll, Bionic Buddy and his sister Melody. I didnt get a link to any information in how to possibly get these dolls. So I figured I would chat with a customer service rep at AB's website. The lady I talked to let me know the Bionic Buddy and Melody are given to all pediatric implantees. I explained to her that I just wanted to have a way to expose my kids to this without it being frightening. She then asked me for my address and phone number. She is sending along 2 coloring books, a DVD and a mini Bionic Buddy as well as a mini Melody! And get this, today is Friday... she says I should have this stuff delivered by FedEx no later than Tuesday! Are you freaking kidding me?! That's like super fast! I'm excited to be able to show my kids this stuff! I cannot wait!

So yep, I'm officially impressed with this company with their customer service! And from everyone else that has AB from the forums, raves about their experiences being just as superior, I definitely feel like I have chosen the right cochlear implant company for me.

Unilateral or Bilateral?

So I've been reading a lot on cochlear implants. I've been trying to decide whether or not I should just suck it up and go bilateral right off the bat and be deaf for 4+ weeks (4 weeks to activation from surgery, then however long it takes for me to start comprehending speech). I'm only thinking of this for insurance purposes. I'm finding that Medicare is pretty strict on those that request bilateral after they've already been implanted with the initial implant. Some get lucky and are approved, others not so lucky and end up having to go through the appeals process. The more I read, the more I keep thinking I really don't want to be 'denied' to have to fight to get what I want. Although, I'm sure being diligent in the appeals process, I would eventually get the approval.

My original plan was to just implant my weak ear, so that during the 4+ weeks, I at least have the capability of still hearing with my hearing aid in the good ear. Can you just imagine, complete deaf silence for 4+ weeks?! I'm not sure mentally I could handle it. Yes I can lip read extremely well, but to explain to my 5 year old that I can no longer hear him and try to lip read him would be very difficult! Heck would be difficult with my husband too because I've always had a hard time lip reading him as well. My 2 year old, she doesn't talk yet, but by the time I get this surgery done, she could be. And I would hope she would not decide to start talking while I'm completely silent.

I do know one thing for certain, I am anxiously waiting my appointment to meet the surgeon in a couple weeks! I will talk to him about my thoughts for unilateral vs. bilateral then. Perhaps he can give me some enlightment and I can feel better about my decision of what I'm going to do. Meanwhile, time just is NOT getting here fast enough. I want to get things rolling and I'm sure its going to be about a 4-6 month wait for surgery. I think that waiting is going to be the hardest part for me. Lord, please grant me the patience for this!!! I'm finally getting feedback from people that have gotten the Neptune and reading their updates, I'm feeling like 'I WANT MY NEPTUNE NOW!'. I definitely am not trying to hurry my life on by, this is just something I want so badly to be able to hear better someday, that its already becoming to feel like a lifetime before anything happens.

I'll write another blog post later about what I'm looking forward to getting a cochlear implant. Hopefully what I'm looking forward to is not out of the norm for expectations. I will have to make sure I work hard to achieve the goals I want to come from my cochlear implant.

Research: Advanced Bionics or Cochlear America?

I have spent a great deal of time researching about the different options for cochlear implants. There are 3 major companies that provide cochlear implant devices. Advanced Bionics (AB), Cochlear America and MedEl. MedEl is not a choice my surgeon has available for a choice. So I did not research MedEl for this reason. I spent my time researching between Advanced Bionics and Cochlear America. I am not an expert and I'm not trying to persuade anyone one way or another. I'm just going to give you the information that I found to be helpful in my decision to choose Advanced Bionics as the manufacturer for my device.

• AB has world class customer service! They care and they are easy to access with questions and problems. You can chat with them online by going to: www.bionicear.com or emailing them at customerservice@advancedbionics.com. They are also located in California.
• AB also has audiologists on staff willing to help answer any questions you have - just email HEAR@advancedbionics.com.
• Advanced Bionics customer service doesn't just stop. They go the extra mile to make sure you are well taken care of. If anything should go wrong with your processor, they ship out the new processor to your home via FedEx within 24 hours (sometimes 48 hours, depends on the day your claim is made).
• AB works harder to improve their products and listen to cochlear implant recipients as to what it is they want.
• AB has more speech processing strategies. We do not all like the same music (country, classical, hard rock, etc.) so why should be be put into the same way to speech coding strategy? With Advanced Bionics you have choices.
• Advanced Bionics has the industry's best external durability. Just ask your audiologist which device breaks down the least often.
• AB's implant has enough capacity to receive at least ten more years worth of free (there may be a co-pay for audiological services at worst) software upgrades!
• AB's implant (called HiRes90K) is also much more reliable (just 2 failures out of 28,000) and more than twice as durable (it can withstand up to 6 joules of impact versus 2.5 joules for the competition). If you want to be technical right now, Cochlear America's implant is currently under recall so they are reverting back to their older implant which is only 1 joules.
• Neptune - It is the newest and most advanced cochlear implant sound processor available with the advantage of not requiring anything worn on the ear!  In addition, Neptune is the world’s first waterproof sound processor, providing the ability to swim and bathe while continuing to hear the world. While the Neptune does not have T-mic or ClearVoice yet available, it is going thru FDA for approval and is expected in the near future. Harmony is another model offered by AB that is a behind the ear model to be worn, it is not waterproof (however it is rather water resistant such as if you were splashed with water or even were to run through the sprinklers, it is not going to 'ruin' your device), and it does have the T-mic already incorporated. The BTE model is also a lil bigger and bulkier than your average BTE hearing aid.
• Another great feature mentioned earlier is the T-mic which allows you hold a phone naturally over the ear, instead of trying to find the mic somewhere on top of the processor above your ear. With the T-mic, you can even use a bluetooth or headphones with ear buds. The other companies can't offer the T-mic because AB has a patent on it. 
• AutoSound is another feature with AB processors that adjust automatically and adapt to changing listening conditions. Meanwhile, other competitors devices the person would be fidgeting with the controls on their processor to adjust to the different varying listening conditions.
• AB has the highest Input Dynamic Range capability. IDR is the difference between the loudest and softest sounds that are presented to you at once.  AB has the capability to go up to 80. Cochlear only allows you to go up to 45.  Given the choice, it makes sense to be able to have 'control' of where your IDR is.
• AB can stimulate the electrodes faster than any other implant - up to 83,000 times per second. Cochlear can only do 32,000 times per second. 
• AB is working with Phonak to develop a smaller external processor. Phonak is a manufacturer for hearing aids, a leader in miniaturizing hearing aids. AB and Phonak are both part of the same company and the only cochlear implant company with such a relationship. The two companies are in the process of developing a smaller processor currently. Just imagine what the two of these companies may be capable of. Technology has come a long ways since cochlear implants began back in 1985.

These are just a few of the highlights that have given me the confidence that Advanced Bionics is for me.  After reading the following blog about Cochlear America, I was pretty set on who I was going with. http://funnyoldlife.wordpress.com/2011/09/12/cochlear-americas-issues-a-recall/#comment-8408. Another thing to note about the link I just posted, the blog has a LOT of valuable information for cochlear implant recipients. Look around the author's site. She has done a lot of extensive research on all 3 cochlear implant manufacturers and is a cochlear implant recipient herself. The direct link to her research is here: http://funnyoldlife.wordpress.com/cochlear-implants/choosing-a-brand/

Here is a good introduction to the Neptune by Advanced Bionics. https://ablearningcenter.adobeconnect.com/_a1012873554/p25bgtomgsx/ On the right, there is a box that says 'Notes', there is the captions to the slide show for those that cannot hear it without the captions.

The Neptune is the device I will be getting. If my clinic provided backup processors like some clinics do, I would probably opt for one Neptune and one Harmony. But since I'm only allowed to choose one, I'm going with what I'm pretty confident that I will enjoy. Both processors rank high, but it is based on your preference as to what you'd want to choose. For me, its the fact that I don't want a BTE model on my ear anymore. I'd love to have NOTHING on my ear. I have long hair so I'm pretty sure my hair will cover the cap where I connect the processor to the implant on my head. And then the cable I would have it go under my clothes and clip onto my pants. I believe the cable would most likely look as if I am listening to an iPod. Then the fact that I can actually go swimming with this is another plus! I cannot even begin to imagine being able to hear my kids in the water and the safety that would come along with that, especially if at a waterpark and a lifeguard is blowing his whistle! I've always had to rely on being very observant of whats going on around me because I don't hear enough to 'just get by'. I doubt that my observant behavior will go away though, its a habit that has been with me for over 28 years now, I'm sure it will take time for me to 'trust' that this new device is going to be my lifetime partner.

I also want to share with you an interesting webpage http://www.citheory.com/  This guy, Mike Marzalek is very intelligent, he has created his own speech processor for his cochlear implant. Very interesting things to read and learn. And he leaves you with his email address if you should have questions. Although I don't understand everything he is talking about, I'm planning on having my dad read it. I'm pretty confident my dad would find this very interesting and would totally know what this guy is talking about and be able to explain it to me better. If not, I'll be emailing Mike myself.

***NOTE*** A lot of my research above, I have taken from notes from various places on the internet.

**Edit** When I do edits, I am adding in comments made on the Hearing Journey forum that I am a member of.

"CA (Cochlear America) can only stimulate one electrode at a time. AB on the other hand, can stimulate 1, all, none or any combination. This is the basic theory around which AB designed the INTERNAL IMPLANT. I am talking about the part surgically implanted in my head. Because of this basic design methodology, the AB internal implant can cause more tones or frequencies to be excited by that internal implant that the sequential mode used by CA. Thus in theory, AB should provide better quality hearing. Beyond that the AB internal implanted processor is using just a fraction of it's capability and future software upgrades to the External sound processor can allow future functions to be used without further surgery. Think about that. Improvements without further surgery. I chose AB for these reasons."  - Ken Fitzgerald

The Beginning of My Journey

Let me start by saying that cochlear implants have been around for as long as I was hard of hearing. However, we were told because I benefited from the amplification of a hearing aid, I was not a candidate for a cochlear implant. I was also told that I had 'nerve' damage and would never qualify for a cochlear implant. This of course was over 28 years ago... And now the candidacy for cochlear implants have changed dramatically over the course of years with advanced technology available. If I was now the 4 year old toddler who lost her hearing in today's world, I probably would have been a candidate no questions asked right away. Well maybe not because I did have better than 40% speech comprehension with my hearing aids in both ears. So when people have asked me why I haven't gone to get a cochlear implant, I've always just said 'I am not a candidate for it'. At least to my knowledge anyway... until last month when my local audiologist (I've been with her since I was 4 years old, so I trust her completely) told me I really should look into the cochlear implants. With the hearing in my left ear starting to decrease and my right ear already being 'shot', I agreed with her and had her send in the referral to the specialist in my area. I figured it doesn't hurt to find out if I'm even a candidate and go from there. Besides, I don't want to wait until my world is silent before I did something about it. I want to be able to communicate with my family and friends. I cannot imagine having a complete silent world around, especially with my kids! Let's just say, my local audiologist has recommended that I go find out if I was a candidate since my right ear stopped benefitting from a hearing aid about 9 years ago. And every year, she'd suggest it again. I just always shrugged it off as I thought I was hearing 'well enough' and I honestly didn't think it was worth my time to drive an hour away just to find out I was NOT a candidate.

I have already started on my journey before starting this blog. I had the first cochlear implant audiologist evaluation last week. I was SHOCKED to learn that day that I was a candidate! I never expected them to even tell me I was a candidate at all, I figured I'd have to find a way to communicate with my world by sign in the very near future. The fact the audiologist told me I was a candidate threw me off. I thought the results the audiologist got, would then be transferred to the surgeon who would then determine if I was a candidate. Ok, this opened up a whole new perspective to me and I felt a lot of a overwhelming urge to yell out 'Oh my gosh, are you serious?!' I had heard of cochlear implants, heard that many people do well with them, but had done no research for myself as I had just 'assumed' I was not a candidate, so why bother researching right?

So after the testing, the audiologist showed me the devices they work with for cochlear implantation. I saw what the piece is that would actually be implanted under my skin on my head, just behind my ear. Then the external portion that would be the processor and the 'cap' I'd have to place over where the implant was put and they connect by magnet. We did some Q&As, I brought my mom into the room with me to go over everything as well. I understood everything just fine, but having mom there just made it easier for the audiologist to explain things better than I probably could have explained it. And let's just say I felt a little more at ease by the time we left that maybe this won't be so bad after all. This is NOT a decision to be taken lightly. There are risks involved. There is a lot to think about and consider. But yet, I needed more information yet, I was still very hesitant on this whole cochlear implant idea. How is it possible that this will help me hear better?

The processor I was drawn to immediately JUST came on the market to the US this month. It is very versatile and the first waterproof processor out there. I would not have anything hanging over my ear like a hearing aid with other models. This one has wires (like that of using an iPod) that I can take under my clothes and clip the processor to my pants, bra, whatever. Advanced Bionics Neptune, very impressive unit they have come up with. (If you hadn't picked up on my title of becoming bionic and the name of the manufacturer...Just thought I'd put a lil laugh in here.) And after researching the other options, I'm pretty confident with my choice. I also joined a forum, the Hearing Journey with other people on there that have had cochlear implants, some are still waiting for surgery, or are in the beginning stages like me. They are a wonderful group and have been very encouraging and have given me wonderful advice. It definitely helps to talk with people that have gone through the same thing. I even found someone on there that had the surgery done by the same surgeon I will be having as well as the same audiologist. So there was a big plus right there. He had nothing but positive to say about the clinic.

I will lose ANY residual hearing I have left at all in my right ear by having the implant done (it doesn't benefit from a hearing aid for me to process speech, so its pointless, however, I do hear some 'tones' from it still; I would lose those tones and be completely deaf to that ear). It takes approximately 4 weeks after the implant before activation of your processor. I could NOT imagine a silent world for 4 weeks!! This is the reason I have chosen to do my 'weak' ear. This allows me to still be able to hear with my good ear after surgery with my hearing aid. And even after activiation, there is NO guarantee you will understand speech right away. You may hear sounds, and sounds you don't understand, it takes times for your brain and the sounds to work together to 'understand' them.

So the next steps are to meet the specialist that would be doing my surgery for the cochlear implant. He will most likely send me off for a CT/MRI scan to be done, they need to be able to see the shape of my middle ear to make sure that implantation is even possible in my ear. From there, would be getting medical pre-op clearance from my primary care physician and waiting on authorization from my insurnace company to have the procedure done. There may be more things involved, but I won't know that for sure until after I meet the surgeon. As it seems all clinics have their own choice of things to be done for the cochlear implant.

This whole cochlear implant stuff really is a VERY frightening thing to me, but at the same time I think 'what if I can hear so much better than I have before?!'... The fear, I think is mainly a lot of the 'unknown', what is my outcome going to be, how long will it take for me to recover, hear and understand speech, etc. The success rate for cochlear implants is over 90%. What does that 90% entail? What do they consider success? On another note, to be honest, I think its more frightening the fact I'm losing hearing in my 'good' ear and my only thought at first was 'I'm gonna have to learn sign'. which really thats not so bad, but thinking of my world being silent and not hearing my kids is scary! Plus, who am I going to sign with? That would mean my kids and family/friends would need to learn sign too for me to communicate with them. That's not exactly 'convenient'. If it weren't for the strong suggestion from my audiologist that I should find out if I'm even a candidate, I'd probably not even be talking about this. And well, here I am... I have my visit with the surgeon day after Valentines Day.