Thursday, June 11, 2009
Monday, June 01, 2009
I decided to do a little spring cleaning to my inbox and I noticed that my sent folder was overflowing with emails answering why I picked Advanced Bionics for my cochlear implant. It seems that after a 100 or so emails, I have unknowingly created this wonderful base for this blog. :)
There are several reasons I chose AB. I wanted to be able to hear better in noise. I wanted to be able to use the phone like a normal person. I wanted to be able to listen to music with ear buds that otherwise proved completely useless to me when I had a hearing aid – the ear was already full enough :) I wanted to be able to transition through different sound environments without fiddling around with the program. I wanted rechargeable batteries because they are safer for the environment and economically friendlier. I wanted the support that was needed that goes along with learning how to hear with a cochlear implant and because of Hearing Journey, I got answers the second I post a question. I wanted to be able to access the latest MRI technology with minimal surgery. I wanted promises of future technology designed to emulate better hearing without further surgery. I wanted total reliability. I wanted the implant to withstand sweating when I work out since I was forever killing my hearing aids. I wanted to push the envelope of hearing. When it came down to it – AB was the only company that could give me that.
1. T-Mic Microphone
The T-Mic ear hook is only available with Advanced Bionics cochlear implant system. This is not to be confused with the T-Coil, an option that can be turned on by your audiologist on your Harmony Processor. It uses the natural shape of the ear to emulate natural hearing. It helps to provide clarity that is needed for speech and is absolutely fantastic in noise because you can rotate your ears to what you want to focus on like a normal hearing person. It comes in two sizes, standard for big ears like mine and pediatric size for itty bitty ears.
Being a long term hearing aid wearer, I was familiar how directional microphones (catches the sound in front of you) and omni-directional microphones (catches the background sound) works but this design intrigued me. With the T-Mic earhook, I can just put the telephone up to my ear without fiddling with anything and the background noise immediately fades away making the your voice or the person on the other end of the phone the dominant sound . When you or the person stops talking, the background noise will become noticeable. It is the same phenomena when I wear a Bluetooth headset and stick IPOD ear buds in my ear. These are things I never thought would be possible with a hearing aid.
2. Auto Sound
The phenomenon that I was just talking about is called Auto Sound which automatically adjusts for the environment that you are in. I shall spare you the technicalities of it all. It allows you to hear whispers to shouts without flipping a switch. You don't have to fiddle around with programs. This is a cut and paste from a bilateral AB user that lives with a bilateral Freedom user that explains how useful it is to have valuable Auto Sound is.
My resident (bilateral) Freedom user having to switch for the phones, having to switch for restaurants, having to switch back for normal conversations. When we listen to music, he switches and switches programs trying to find something that sounds ok. He gets frustrated with it. If he forgets to switch back, he can spend the morning not hearing well in normal situations, with his voice louder than necessary. That is my tip off that he forgot to switch back...so I will have him check and sure enough, he forgot to switch back from whatever program he was using, back to his "everyday" program.
I would be highly agitated if I had to keep flipping programs to go from my house, to my car, to work. With Auto Sound, I hardly ever have to switch.
3. Familiarity of Hearing Aid Style
Advanced Bionics has the options of three program slots and it mimicked the style of what I was used to with my HA. Right after you get activated, you tend to play a lot with different programs options that AB has to see what suits you best but now I settled down with just one program from everything: But just for sake of having options, I have a normal everyday program, a noise/telephone program that I hardly ever use unless I am in a noisy environment and music. I find it redundant to have more than three program options because like myself, most of the CI users after they learn how to hear with the CI, you might find yourself just sticking to one. If you go to a CI clinic that gives you two processors, a primary and a back up, you can utilize both of them to play around with different settings until your brain figures out which one it likes best.
4. Widest Window of Sound (IDR)
Since a normal person ear cannot process any sound louder than 120dB and it will hurt a hearing person to hear anything louder than 120dB which results them sticking their fingers in their ears to dampen the noise. AB has its own ceiling as well. It is called IDR which stands for Input Dynamic Range that can be adjusted up to 80dB. Other companies are at 45dB. It just means that ceiling on the CI or window of sound can process up to 80dB and then Auto Sound kicks in and automatically dampens the sound to make it comfortable for us to tolerate the loud noise.
If you can picture a window shut, which means very little sound is coming through because the window absorbs most of the sound. If you open the window a little bit, you will begin to hear some noise such as leaves blowing around, cars passing or a faint impression of someone hammering. I call this a low IDR. If you open the window up halfway, you are inviting even more noise. You might get the leaves blowing, cars passing and a more distinct impression of the person hammering but you might hear the birds singing as well. If you open it up all the way, you might as well be standing outside. I like to it call it adjustable noise control. :) With a wide IDR, I can go to a concert and hear the concert as it was meant to be heard. With a narrow IDR, it gets rid of unimportant noise or what I call "white noise" and brings a sense of perceptible clarity.
5. Rechargeable Batteries
I am extremely environmentally friendly. I recycle. I drive a hybrid which resembles a hardboiled egg but you just can't beat it the 55 mpg that I get. So, rechargeable batteries are an easy "green" option. Advanced Bionics has two sizes of rechargeable batteries, extended and slim. Extended is what I have which I get an average of 24 hours out of, you figure every two days I'm slipping a new one in. I got four batteries with my processor when I was activated and I lost one (blushing) but three batteries last me the whole week. It is not only environmentally friendly, it is economically friendly as well. There are no trips to the store to buy batteries which means more money in your pocket. You might want to buy a new set of batteries every 2-3 years but if you have a durable medical rider on your insurance policy, that means very little out of pocket. AB provides a little wallet that you can attach to your key ring to carry your batteries with you.
6. HiResolution Fidelity 120 Sound Processing Option
The latest software development is the HiRes speech strategy option with Fidelity 120 options. This is an option that can help you in noisy conditions, appreciate music and on the telephone. The only way I can describe it is if I compare it to a camera. A hearing aid is a Polaroid and HiRes with Fidelity 120, it is a 4MP Camera. I can hear in noise much more easily than I could ever hear with a hearing aid. Since it was designed with music in mind, it has been a joy to actually enjoy music especially now that I am bilateral.
It uses current steering technology to increase spectral resolution from as few as 12 to 22 spectral bands to as many as 120 spectral bands. Advanced Bionics is the only company that can achieve this type of current steering technology because it has a power source each electrode. Other companies that have only one power source for all of their electrodes claim that they can steer electrodes but they have no speech strategy devised for it which makes it totally useless, doesn't it?
7. Independently Controlled Currents or Electrodes
Since I have a technical background, I have always been interested in how components function and it played a large part of my research. All the components may look similar in programming, chip size and material but the old saying, never judge a book by its cover. The HiRes 90k implant has the 16 independent computer controlled current sources where other companies have one power source. It is like if you set up X number of speakers and plug them into one outlet, you will not get the same performance if you plug in each one of those speakers to its own power supply. With independently controlled current sources, the ability for tons of future software development since it can control each electrode.
8. Internal Chip Memory
The fact that the internal chip memory is only operating at 25% capacity means that there are tons of room for development.
9. Total Reliability of Internal and External Report
Advanced Bionics has been able to issue a total reliability report. For the implant, it is at 99.5 on June 2008 and for the Harmony processor, the return rate is less than 1%. I do want to point out that you want to be worried about the reliability of both the implant and the processor because if one stops functioning, you can't hear - point blank. The other companies do not offer a reliability report on their processors because it is absolutely deplorable. I always hearing about parts breaking down and being replaced. I absolutely hated it when I was left in the dark when my hearing aid broke down and believe me, I have done my fair share of killing them. I felt so disconnected from the world as I knew it. I have yet to have my processor replaced (knock on wood) but if I ever did, I would have it within 48 hours with the Processor Direct Program.
In 2004, Advanced Bionics was under another company called Boston Scientific when they had agreements with two Vendors to supply a part for the internal component. They noticed that the rate with Vendor B component was prone to moisture issues was 1% lower than the Vendor A component. AB issued a recall on their own accord recalling the devices due to the potential presence of moisture in the internal circuitry, which can cause the device to stop functioning. Not all of the Vendor B implants had this problem. Advanced Bionics has since resolved this issue by only using parts supplied by Vendor A. As a result, their total reliability has gone way up.
10. Processor Direct Program
Processor Direct Program minimizes the time waiting if you should ever need your sound processor replaced. Just call your audiologist and they will contact AB via our secure, automated website and upload your sound processor’s unique program file. AB technicians will load your program into a replacement sound processor and ship it directly to you. Because you receive a fully functional processor preloaded with your customized program, there’s no need to schedule a programming visit. That means more time for yourself and more money in your pocket.
Processor Direct is completely safe, so there’s no risk of hearing with the wrong program. AB’s secure website makes it impossible for your audiologist to upload the wrong program file, and for additional security, AB’s patented IntelliLink™ feature will not allow a processor loaded with the wrong program to work with your implant. You enjoy peace of mind knowing you have the correct programs—developed specifically for you. An office visit to program a replacement sound processor might not be covered by insurance companies, which mean you may have to pay the cost. With Processor Direct, no programming office visit is required and that means no unexpected costs.
Advanced Bionics has the largest online community forum – Hearing Journey with over 4,500 users. It consists of CI candidates, recipients and parents of children recently diagnosed with hearing loss, parents of children that have cochlear implant and audiologists. It is a huge wealth of information as everyone rallies around for support, offers advice, shares tips and tricks about surgery or learning how to hear with a cochlear implant. There is a CI chat held every Thursday night from 8pm EST til the cows come home, that you can come and talk to other cochlear implant recipients, candidates, parents and audiologists. Just log in to Hearing Journey and click on the chat options and you are in!
Advanced Bionic has taken it one step further to provide one-on-one support. They have just launched a new site for cochlear recipients and candidates from across the country through its new "Connect to Mentor" Web site. The new site, part of the BEA (Bionic Ear Association) Mentor Program, that I and several other bloggers are a part of, allows cochlear implant candidates to contact volunteer "mentors" and communicate directly with hearing professionals. You see my smiling face on this site as well. :)
Candidates can use the Connect to Mentor website to search for mentors who include parents of implanted children, relatives of cochlear recipients and adult recipients. Each mentor has a profile complete with a personal photo and facts such as favorite sound, interests (i.e., cell phone user, traveler, musician), hometown, age they were implanted, severity of hearing loss and how they can help cochlear implant candidates. Then, candidates can choose to "start a conversation" with the mentor directly from their profile.
Thursday, May 14, 2009
The following blog is brought to you by:
Without it, there isn't anything getting done around this blog here. But through the miraculous powers of the coffee plant, I was able to devise this rather inspiring little chart of all my HINT (Hearing In Noise Test) scores.
You will notice that my left ear before I was implanted was 0% across the board. This was an ear that has been unstimulated for over 15 years. I was pretty damn deaf in that ear. I can't argue with that. :)
The red column shows my progress with my left ear tested at one month post activation. I scored 44% in quiet. I was pretty elated to go from 0% to 44% in a matter of a month. I distinctly remember thinking that my brain was playing tricks on me because it was almost as though I had to learn to trust myself that I was hearing something correctly. As it would turn out, I was hearing it correctly half the time.
The lime green column is my left ear tested at five months post activation. It jumped up to 79% in quiet and 34% in quiet. I was practicing with an audiobook every single day for at least half hour to an hour. This was kind of at the point that my brain was sorting out speech in quiet and learning how to pick out what is important in noise. Baby steps!
The purple column is my left ear tested at one year. My score remained the same at 79% in quiet but my score in noise went up to an astonishing 73%. Since I scored so well with the first level of noise, my audiologist felt that I could handle the harder noise test and I scored 64%. I was downright impressed with my scores. Now, I was thinking that the benefit of a cochlear implant can really take up to a year especially on an ear that has been unstimulated for so long.
The dark blue column shows my left ear tested at one year and five months. I don't know whether I had a really good mapping at my one year appointment or my ear just blossomed but I scored 96% in quiet, 88% a little bit of noise and 84% with even more noise!
Now we are moving on to my right ear that has been stimulated all my life. the orange column shows my HINT scores when I was evaluated for a CI in May of 2007. I wish I could get my right ear tested before I had the surgery because I couldn't hear anything after I hit my head on the roller coaster. But in my total unprofessional opinion, when someone takes a loud speaker and talks to you about five feet away with a fully powered hearing aid in and you can't hear didly squat, I'm going to say my scores were next to nothing. Just saying.
The light blue column shows my right ear tested at one month post activation and it scored an AMAZING 85%! Now, it took over a year for my left ear to get up over 80%. Even with the first level of noise, I managed to hear 40%. That will get better as time goes on. Now I am totally giving credit to the substantiated claims that surgeons advice about implanting a better ear. They apparently know what they are talking about. :) It means that it is less stressful and the learning curve is much shorter. But you know me, I do nothing easy...
The mauve or dusty pink column shows them tested together. The results are nothing less them supremely impressive. I scored 97% in quiet, 85% a little bit of noise and 77% with more noise introduced.
I was so proud of the good job they did on the tests that I went right out and brought them a pair of earrings. :)
I will be attending the Northeast Cochlear Implant Convention 2009 on July 10 - 12, 2009 at the Sturbridge Host Hotel & Conference Center in Sturbridge, MA where none other Josh Swiller who is not only pretty easy on the eyes but the author of “The Unheard: A Memoir of Deafness and Africa.”, will be the keynote speaker.
You can take a look at the 2007 convention pictures here. I have to say from looking at the pictures, this looks like it is going to be a fun group! Children, adults and workshops - oh my!
So what is this convention about, check out this snippet below.
Dear Families and Friends,
You are warmly invited to attend the Seventh Biennial Northeast Cochlear Implant Convention, to he held July 10-12, 2009 at the Sturbridge Host Hotel in Sturbridge, MA. On-line registration or registration forms will soon be available on this site. Call 1-800-582-3232 to reserve your room at the hotel, or on-line at www.sturbridgehosthotel.com.
Nearly twelve years have passed since our first convention in Sturbridge, in 1997. In some ways, the convention is like a school reunion. Lounging around the pool or at a party in a guest room, we catch up with our friends’ changing lives: new jobs, or maybe retirement; children progressing through elementary, middle and high school, and on to college. And incidentally, how are you or your child doing with the implant? How nice to hear that things are going well!
The theme of the ’09 convention is “We Hear the World.” It is a natural evolution from the previous convention themes of “Raising the Bar,” “Enhancing Communication,” and “Technology Rocks!” In “Raising the Bar” we considered the new higher standards for classroom acoustics, the rising performance levels of cochlear implants and assistive listening devices. The theme “Enhancing Communication” reflected the many new technologies and approaches for facilitating communication access by adults and children in a wide range of situations. “Technology Rocks!” addressed the many exciting technologies and approaches that can unlock communication potential and make possible more complete and satisfying human communication in school, at work, in social settings with friends, and at home..
“We Hear the World” celebrates the many examples of cochlear implant users participating fully and independently in the world around them. The keynote speaker at our upcoming convention, Josh Swiller, will offer some thoughtful and humorous insights about hearing the world and being a part of the world. Josh spent two years living in a rural village in Zambia. That experience is recounted in his book, “The Unheard: A Memoir of Deafness and Africa.” Josh has had a “ large variety of careers, including forest ranger in the California Redwoods, sheepskin slipper craftsman and salesman, Zen monk, raw food chef, journalist, and teacher. The title of Josh’s keynote address is “We Are the World.”
Hearing the world also implies that we listen with empathy and respond to needs that we learn about. Like everyone else, cochlear implant users experience passages in their lives. High school students leave home for college. College students enter the workforce. The generation born after WWII leaves the workforce for retirement, and many of those who received the earliest implants are now golden agers. New technologies and communication approaches can ease the transition to a more mature stage of life. At the convention we will explore these transitions to the next arena of life.
See you there!
Larry Orloff, Chairperson, President, MIC and Marilyn W. Neault, Ph.D., Co-Chairperson, Children’s Hospital Boston
So go ahead and download the registration forms here and I hope to see you there!
Thursday, April 30, 2009
Hearing Loss Association of America is holding its annual convention AND celebrating its 30th birthday in Nashville, Tennessee at the monolithic Gaylord Hotel on June 18th to the 21st. You can check out the convention registration package and rates here. Hurry though, the rooms at the hotel are at 98% capacity and registration ends on May 24th. So, break out your happy finger and click on this link for convention details.
The keynote speaker for this year is Vint Cerf, Ph.D., vice president and chief Internet evangelist for Google, and widely known as known as one of the “Fathers of the Internet." Anyone who had a hand in developing the Internet is alright in my book. He is hard of hearing and his wife is a recipient of a cochlear implant. I can't wait to hear Cerf's up!
I just so happen to have the workshop schedule here. If you take a gander, you see that Tina Childress and I will be giving a workshop called "Wireless Technology Made Simple", on Thursday, June 18th at 2:30. I'm so excited because I love bringing out the inner geek in people especially when it comes to helping them hear better with technology. :)
I am going to be representing Advanced Bionics on Bilateral Cochlear Implant panel that my buddy Wayne Roorda is hosting on Saturday, June 20th at 10:00. This panel will be made up of recipients of all brands. I encourage that if you have any questions or concerns regarding bilateral cochlear implantation and you are attending the convention, shoot an email to firstname.lastname@example.org with your questions.
At the same time, my very best bilateral bionic belle, Jennifer and coincidentally Nashville's local HLAA Chapter President will be giving a presentation on Social Networking for Young Adults. She is just the person to give that presentation because she emanates social butterfly! On another note, please help Jennifer reach her goal for the Chattanooga Walk4Hearing on May 16th.
I will be volunteering at the Advanced Bionic booth just waiting for people to pick my geeky brain about cochlear implants and the Harmony processor.
I am HLAA's 2009 convention blogger!
I got some pretty big ears to fill here...
I'm attending this free Seminar on May 11th, 7-9pm at the Melville Marriott Hotel in Melville, NY on candidacy and advancing technology in the treatment of hearing loss. Sponsored by Advanced Bionics.
Featuring Speakers from North Shore Medical Group, Mount Sinai School of Medicine.
- Eric Smouha, M.D., ASSOCIATE PROFESSOR Otolaryngology
- Karen Siegel, Audiologist
- Christie Haug, Clinical Specialist Advanced Bionics
- Katie Peter, Regional BEA Manager, Advanced Bionics
Space is Limited! To register for this free event please contact:
Linda Luallen at lluallen@AdvancedBionics.com
If you are unable to attend our event and would like information
about cochlear implants, contact The Bionic Ear Association at
hear@AdvancedBionics.com or call 1.866.844.HEAR (4327).
May 11, 2009 • 7:00 p.m. – 9:00 p.m.
Melville Marriott Hotel
1350 Old Walt Whitman Road • Melville, NY 11747
Sunday, April 12, 2009
This week has proven not be superfluous but surprisingly productive towards the end. The first couple of days, I would be sprawled out on my recliner, cupping my chin in my hand and staring into space wondering why in the HELL everything was plinking. People plinked. My dog plinked. She was plinking all over the house. I was ready to take her plinking fuzzy butt and have her deplinked. The leaves plinked. The wind plinked. My breathing plinked. Paper plinked. Staplers plinked. It was a plinkerific mess for the first couple of days.
As each new day dawned, the chipmunks have gone into hibernation and the robotic voice synthesizer has come out to play. The plinking began to lessen leading the way to the subtle phonetic nuances to enter the foreground. Of course, this wasn't entirely clear to me until I picked up the phone and heard a series of numbers correctly. First, I thought that I got them wrong but I listened with my old ear which proved me wrong. I was hearing nothing but plinking, and unknowingly I was understanding more than I thought. I took me several weeks to understand numbers with the old implant. The last time I could understand anything on my right ear on the telephone was February 22, 2007.
Naturally, my optimism levels rose. I decided to tests my brain out to see what else it was hiding from me. I had the LING sounds read to me, and I guessed all but one correctly - EEE. In the beginning I thought there was no way I could start auditory rehab with everything beeping, boinging and plinking but with my newfound discovery, I threw myself into it. My first "lesson" is Twilight by Stephanie Meyer. I downloaded the audiobook on my ipod and plugged myself in via the Direct Connect cord. I could tell that it was a woman narrating the book, but in real life I had difficulty discriminating between a male and a female. I was not expecting much - a phoneme or two, but much to my surprise I was sporadically picking up broken sentences. I was throughly confused when I closed my eyes to understand real live speech, I felt as though I wasn't picking up diddly squat. But, when I had myself plugged into the Ipod I was picking up strings of words. I've deduced that my brain is playing tricks on me.
This whole week I had the chance to adjust to HiRes - P. In the beginning, it offered me less plinking than HiRes - S. So, I stuck with P all week but on my way to my first mapping this morning, I put the ear buds from my Ipod into my ear to listen to Twilight and noticed that I was picking up a lot more road noise than I liked. I decided to cycle through the programs to see whether the other two could filter out the road noise. I was pleasantly surprised that when I used HiRes-S at how well it filtered the road noise. I was even more surprised at how well I was understanding - far superior to what HiRes-P was giving me. At the last moment, I decided on HiRes-S as my speech strategy.
As I was waiting in the waiting room, I sat a good 20 to 25 feet at a distance from this secretary who was brandishing a very shrilling piece of machinery - a stapler! I was dying listening to every time she felt the absolute need to fasten some papers together which happened to be every ten-seconds. Then my audiologist came and rescued me. First, she performed what is called a NRI test which measures the nerve response to electrical stimulation. I didn't have to do anything but sit there and look out the window watching clouds roll in. This gave us an indication of where the volume should be and it was right in the ballpark.
My main issue was the robotic voices and certain high pitched tones such as staplers, dishes, and squeaky doors, paper and numerous others were causing me to brace for the auditory attack. It doesn't hurt, but it just makes me acutely alert that they are there! So what my audiologist did was raised the volume and added some gains in the high and the lows frequencies. As I expected, we could not map out the robotic voices but we got them tamed. My brain will acclimate in the coming months. This took just a half hour, I was out the door and on my way home. Once I got home, I crashed...
Since it has been a few days, I can make an honest assessment of the mapping. My voice sounds like Darth Vader which is really testing my ability to have a conversation without laughing. I can tell the difference between a man and a woman's voice. I noticed that while I am reading along with the audiobook, the frequency that I am picking up sentences is increasing. Yesterday, I was driving with a friend in the passenger seat and I could understand him without reading his lips even when night descended. Since my first implant was on my left ear, there was always a degree of difficulty with hearing people in the passenger seat but that has become easier.
For me, this bilateral process is like waiting for a flower to bloom. I know the seed has been planted. I'm watering the seed by wearing it by itself as much as I can. I'm fertilizing it with auditory rehab. I'm providing the necessary light by venturing out into different environments. For I know that this cannot be rushed and all I can do is wait. I'm just thankful that I don't need a green thumb for this. :)
Friday, April 03, 2009
My new ear was activated yesterday and the results were very promising. When my audiologist plugged me into the computer, I could have sworn I heard something – a surge of electricity but at that point my audiologist didn’t even touch the volume control. As my audiologist gradually turned up the volume, I watched her lips emit an artificially high-pitched voice. When the volume reached a tolerable level, I actually HEARD but I didn’t understand her talk where with my first ear; I wasn’t blessed hearing any type of vernacular. Naturally, my response was giddy since she talked like a chipmunk. :) It was difficult to keep a straight face while trying to effectively describe what I was hearing.
Once we fiddled around with the new ear, they decided to throw the old one back on to see whether I have a sense of balance auditory wise. I immediately had to turn the volume down on the old one. I could tell that I was hearing in stereo because the auditory input in each ear was dramatically different. My old ear was well, my old ear. My new ear was beeps, bongs, whistles. After a few minutes, my old ear decided to become the dominant ear. Once it did that, it somewhat canceled out some of the beeps, bongs and whistles.
No one took pity on the deaf girl because they started ripping paper, banging on the table and tapping their nails. The entire activation took less than an hour. My audiologist didn’t have to explain anything to me since I am a seasoned pro with the implant business. :) Since I went through this process already, I was very conservative volume wise. With my first ear, it was my initial instinct to amp up the volume because that is how you hear with a hearing aid. This time around, since I know what I know now, I know that you can’t rush it. Your brain will tell you what it wants, when it wants it. I was fitted with a Hi-Res Paired program with Fidelity 120, Hi-Res Sequential program with Fidelity 120 and a Hi-Res Paired noise program with Fidelity 120. I get to cycle through each one for several hours to see which one I prefer. My audiologist strongly suggested that I leave my old one off as much as possible to give my new ear some time to play catch up. Joy. :)
After activation, I walked out of the hospital with my slot firmly in position for Hi-Res Paired program with Fidelity 120 and unknowingly walked into the world according to Super Mario brothers. All sorts of beeps, buzzing, and bongs just pulsing away in my head. It sounds all futuristic but emanates the past of the arcade games from the 80’s.
Just driving home was a trip having the wonderfully iconic BOING of Super Mario powering up as I drove over every bump on the road. The only thing that really stood out is when I yawned a good healthy yawn – it sounded like a very horny orca performing their mating call. Feel free to YouTube that. I had noticed that I was unable to hear my blackberry chirp or croak when someone sent me a message. A few hours later, I could hear it. When I first got home, I couldn’t hear my dog’s toenails click clack against the floor. A few hours later, I could. I must have walked her up and down my 15 foot hallway about twenty times to hear it. I’m sure she thought I had gotten lost in my own house. :) I can tell when someone really has a good laugh. That is probably the only thing that I can pick out right now. BUT, I did pick up that there were some drums playing on the television.
I learned a little something about bilateral mappings – it wears you out. I mean my mappings for just one were a bit tiring but two – Oy! I’m not a napper by any means because I’ll sleep when I’m dead. But I buckled under pressure and took a twenty minute snooze.
This morning I decided to give Hi-Res Sequential program with Fidelity 120 a whirl – at work. I am sitting here with my hair down cleverly disguising two cochlear implants - the new one attached and the old one with the coil hanging just in case I need to use the telephone. it looks like a very ugly earring. Instead of listening to the world dictated by Super Mario Brothers, I am on the Galactic Republic listening to the auroral radio chatter of R2D2. When someone talks, it is as if R2D2 has a hyperactivity disorder – different beeps, bloops, and whistles randomly and furiously. And I am supposed to figure those out. :) I am listening to rain and it sounds like when Sonic the Hedgehog is collecting a whole mess of rings. When I walk down the hallway with my heels, I feel as I am walking with the weight of an elephant because it is very loud.
All in all, I am thrusting myself into the noisy world starting from scratch – hearing everything for the first time – again. I forgot how much I loved this process. :) Everything that I am hearing, coincides with a sound immediately. That pleases me. The toughest part about this for me is leaving my old ear off but I will remain diligent. My next mapping is next Friday on April 10th and that is when the real fun begins. For now, R2D2 and I are going to be buddies for the next week.
Thursday, March 26, 2009
I have been awful about updating my blog but I'm a busy bilateral bee. I got my stitches taken out on Saint Patty’s Day at some gosh awful time of 7:45 in the morning. The doctor said everything looks great. As I mentioned in my other post that when I was in the recovery room, the doctor said something about a hole in my head but I was a little preoccupied with organizing a manhunt for my Blackberry to care about a little hole in my head. I was concerned about it later on.
As I was getting the stitches ripped out of my head, the subject of the hole happened to come up. The area where the surgeon wanted to create a bed to put my implant in was thin and in doing so small part of the Dura Mater which is the covering of the brain had a hole in it and some cerebrospinal fluid leaked out. The surgeon had to patch that up. It is a similar to when they implant a baby because their skull is thin and pliable. First, I was a little freaked out because I was envisioning this implant sitting right on top of my brain but it is actually sitting on mostly skull except for a small portion of Dura Mater. That makes me feel a little better. I had to ask if I had to take any extra caution in activities and he told me to use common sense - right.
After the question and answer session with my surgeon, I preceded right back home to take a much needed shower. I admit that with this surgery, I was not as strict with the doctor’s orders as I was the last time. Day three, I decided to throw caution to the wind and slather the incision up with Neosporin and hire a cheap shampoo girl (Mom) to wash my hair. Afterwards, I dried the incision thoroughly with Hydrogen Peroxide and applied a layer of Neosporin. I guess I should put a half hearted disclaimer here: If this influences you to blatantly disregard your doctor’s orders, I am or this blog in no way shape or form responsible for your actions.
Now with the legalities out of the way, I wanted to create a post specifically to compare and contrast my left ear which was my first implant and my right ear which is the newest addition to magnetville. I revisited my surgery posts for my left ear. A wave of nostalgia came over me but I'm over it already. :)
LEFT: When I woke up in the recovery room, I was in a good amount of pain. I felt as if my head got ran over by a Mack truck. The nurses were quick to shoot my IV up with some pain relievers. God bless them. It took a little while to come around from the anesthesia. I was under for three and half hours because my doctor had some issues getting the last electrode in but finally got the bugger in.
RIGHT: This time, I woke up with very little pain. I was able to wake up quicker since my surgery was only two and half hours. I was up and around within a half hour. The surgeon had no problem getting all the electrodes and the only issue were the leaking brain juice.
LEFT: I parked my big ol’ butt on a recliner for a week. There was no way, no how I could lie down. When I tried to lay flat in my bed, I experienced the sensation of a spinning vortex. So the recliner it was for me.
RIGHT: The first night, I slept on an incline but by morning, I was sleeping flat on my back on a pillow and have continued to do so.
LEFT: I was given the generic form of Vicodin that I was instructed to take two every four hours as needed. Well, I needed the whole damn bottle because I felt as if I got into a car accident with the aches and pains. I was a pill popping freak with this surgery.
RIGHT: This time around, I got the good stuff - Percoset which did the trick beautifully. Strictly for pain management - one in the morning and one at night for five days then I switched over to Tylenol gelcaps. One bad side effect of Percoset is constipation so try to increase your daily intake of fiber while popping the perks. :) Words of wisdom.
Metallic Taste Disturbance:
LEFT: I didn't get this side effect the first time and anytime I read that someone suffered from it, my reaction was always the same - dude, that sucks.
RIGHT: What goes around, comes around and it rolled around on day four, I went to take a sip of coffee that I had slumberly prepared that morning and as it coated my taste buds, a distinct copper flavor was detected in the right hemisphere of my tongue. Much to my dismay, I went on a coffee hiatus. It took about a week and a half for that to go away and for that next week and half, I found out what the headless horseman felt like but I lost four pounds. :)
Day of Doom: Day Three
LEFT: When day three rolled around, I was feeling pretty crappy.
RIGHT: When day three rolled around, I was feeling so good that I went back to work on day four which I will now admit was a very stupid move because I was so drained just sitting there. I resumed my right to recovery at home on day five with all the Food Network I could watch.
LEFT: The only time that I experienced dizziness was when I laid down and I tried very hard not to do that!
RIGHT: Nothing at all :)
LEFT: I remember getting the cotton ball feeling with this ear for about two weeks.
RIGHT: The only time I experience the sensation of fullness is when I bend over.
LEFT: My jaw was tender but I could eat a hamburger without cringing in pain.
RIGHT: This time around was ouch. the jaw tenderness was bumped up a couple of notches. I couldn't yawn without flinching. Since opening my jaw anymore than an inch caused me to wince in pain, food preparation was a fiasco. Everything had to be in extra small bites.
LEFT: It was the fattest ear that I have ever seen in my life.
RIGHT: If I had any swelling, I couldn't tell and neither could anyone else. By the third day, curiosity got the best of me because I wanted to see whether the magnet from my processor could find the implant. It had no problem attaching itself.
LEFT: The top of my ear felt as if it had been anesthetized for three months. It took about three months for me to get feeling back into my ear. I could not sleep on for three weeks. In fact, the day of my activation was the day I was able to sleep on it.
RIGHT: Considering that I am two and half weeks post surgery, it is still numb but I can sleep on it now!
LEFT: Before the surgery, I had a major case of tinnitus that sounded like a train going around my head. After the surgery, I woke up to complete quiet. It was so pleasant to have that turned off. :) I did experience short episodes of tinnitus but after activation, it was gone.
RIGHT: I had some minor tinnitus before the surgery. After the surgery, it was like a different album was playing. Now, I don't hear much of anything except on occasions. I expect it to be less than noticeable when I get turned on.
LEFT: I don't even want to recount the anguish I went through when I just attempted to blow my nose with this surgery. I was truly paralyzed in pain.
RIGHT: Considering the painful experience I had with the left ear, I didn't want to take any chances. I decided to follow doctors orders on this and wait the two weeks before I attempt to blow my nose. The result was snot and a slight ear pop. :)
LEFT: My neck was a little stiff but not near as stiff as the right ear.
RIGHT: My neck was stiff for about two weeks until I could move my neck side to side with no problems.
LEFT: I looked like I got kicked in the side of the face by a mule. It wasn't pretty.
RIGHT: I think I had a slight discoloration on my temple. Other then that, I looked good.
LEFT: I was popping so many pills that knocked me out that I was having cat naps every two hours.
RIGHT: I was tired but not to the state of nap time. :)
LEFT: I didn't dare to drive until the sixth day. I cherished the fact that I had a driver license.
RIGHT: I was driving by day three despite the stiffness I had in my neck.
In conclusion, my right ear surgery and recovery went much smoother then the first one. It was so drastically different. Here I am two and half weeks post surgery and I am back to work full time. I went back to the gym doing light work outs. My incision is healing quite nicely. It really has been a super simple recovery. My activation is a week from today - April 2nd at 2pm.
The only gripe I have about this surgery is finding out that I am not as thick headed as I thought I was.
Wednesday, March 25, 2009
The charity book project, I Don’t Believe My Ears, is finally completed after several months of assembling it together. Val Blakely from Cochlear Kids and Rachel Chaikof from Cochlear Implant Online would very much like to thank all these contributors who submitted wonderful and humorous stories:
Me :) at Chronicles of a Bionic Woman
Amy Kwilinski at CochlearImplant.net and Auditory Verbal Parents
Jodi Cutler Del Dottore at An American Mom in Tuscany
Kim Larsen at The ASL-Cochlear Implant Community
Kimberly Pendley at Can you hear me?
Leaf Leafler at Say What?
Leslie Hine at The Hine Family Est. 1996
Melissa Chaikof at Auditory Verbal Parents and Cochlear Implant Online
Melissa Krilosky at Our Journey to the Hearing World
Val Blakely at Cochlear Kids
All proceeds will go to Deafness Research Foundation, a non-profit organization 501(c)(3) that works to fund research to help those living with hearing loss and balance disorders, and on programs to raise awareness of potential causes to protect those at risk.
Go order one today and help create a difference for today’s generation and the future generation of deaf people and have some good laughs!
Thursday, March 12, 2009
Today is day four of my recovery from my second cochlear implant and you will never guess where I am - I’m sitting at my desk at work, sipping on a cup of copper flavored coffee skillfully prepared by the professional coffee artisan across the street. I’m visually picturing you – my loyal readers – jaws dropping right about now.
But I am not kidding you.
I have been totally unenthusiastic about going bilateral even though I have a swarm of bilateral buddies swearing up and down that two is better then one. I would just nod in agreement just to hush them up. When I had my first cochlear implant surgery, I felt a sense of urgency to get it done. It was either to remain deaf or given the possibility to hear and I chose the latter. I had a rocky recovery with my first cochlear implant surgery and I was hesitant going through the whole ordeal again though I know the benefits far outweigh a few days of feeling as if I got ran over by a train. With that in the back of my mind, I had no immediate desire to go freely jumping on the bilateral bandwagon. But then you read studies like these:
Bilateral cochlear implants: A case when 2 are definitely superior to 1
Adult Bilateral Study PDF
And ponder if it is really worth it? But then, what did I have to lose? So I finally got a surgery date of March 9th and insurance approval for going bilateral a week before going under the knife.
On Monday, I had to report to a different building then my first surgery. It was a happy building - lots of shiny stuff that caught my eye. The sage green aesthetic calmed the most neurotic of patients. I had to be there around 9:30 and I was a little late, of course, but they still took me in anyway. They slapped the identification bracelets on me and made me get undressed. They let me keep my skivvies on because last time they demanded them off which is a bit embarrassing. :)
Just like last time, I gave the nurse one chance to get the IV in. I start practicing my lamaze breathing and pop she got it in on the first try. She decided to put the IV in my arm as opposed to my hands which has some thin veins. I had a horrific experiences where a nurse tried six times to put an IV in my hand. I ended up passing out and was put on oxygen. Hence the reason I have a rule in place, one shot and that it is.
Then the gas man with this unbearable accent came strolling in my little curtained in area. I get nauseous with anesthesia so I asked him to put some extra anti-nausea stuff in with my cocktail. However, I had such a hard time understanding him. He was Indian with a heavy British accent that had no desire to move his lips to enunciate. He just gave up with me and carried on talking to my friend as if they were a bunch of little old ladies about smart phones. After he left, I bawled out of sheer frustration. My favorite bilateral bionic babe, Jennifer managed to get my tears down to a mild drip just in time for my surgeon came in. He recapped the procedure as he marked my ear lobe with a teeny tiny X.
Super simple stuff – really.
Just before noon, they got smart and sent a native English speaking member of the anesthesiologist team this time to wheel me back to the OR. They were so kind to let my implant come along for the ride. It was similar to playing bumper cars on the way there. The chairs that they use don’t exactly go around curves well. With some narrow hit and misses, I hopped up on the table.
Then the gas mask came out. The last time they used the mask, I actually tried to rip it out because I felt as if I were making a mistake getting the implant. Silly me. This time, I felt at peace and drifted off.
The surgeon got all 16 electrodes in and stitched up by 2:30. I was told that the area where he wanted to place the implant was a little thin and that there was a hole already there (scratching head) but he spackled it. I will find out more about that hole that was in my head when I see him on March 17th to have the stitches removed. I woke up in recovery around four o’clock and it was worlds apart how I woke up the first time. I felt dopey as all hell. With the first surgery, I felt like a mack truck ran over my head and a bit dizzy. With this surgery, I didn’t feel any pain, pressure, dizziness or taste of metal. I hardly noticed the traditional turban but I was able to wear the cochlear implant over it.
Within a half hour, I was up and using the lavatory all by myself. I was drinking water and questioning on the ETA of my applesauce. They decided to inject some pretty potent pain medication in my IV which made everything wrong seem right in the world. They kicked me out of the hospital around five o’clock.
When we got home, I walked into Walgreens and drop my prescription off. After that, I plopped on the couch and got the royal treatment for the rest of the night. I mean - homemade spaghetti and meatballs with warm apple pie! You can’t go wrong with that! With my first one, I had no problem eating but I did have a problem with sleeping. I slept in a recliner to keep my head elevated but with this ear, I slept flat on my back.
The next day, the sadistic piece of gauze that was wrapped around my head a few hundred times came off. I was pleasantly surprised. I think my tears worked on my surgeon because he did not shave off nearly as much hair as he did before. Notice my picture of my first ear incision compared to my second ear.
Another pleasant surprise was that I got the good happy pills this time and not the generic version of Vicodin. I got some pretty white round pills of Oxycodone. With my last surgery, I was popping the two Vicodin every for hours. I take maybe one every 8 hours.
Yesterday was the dreaded day three of the recovery process. It is usually the day that most people feel really crappy. With my first ear, I felt horrible from day three to five but I felt disgustingly good. I have virtually no swelling whereas the last time my ear needed liposuction. It was gross. I woke up and started cleaning. I went for a drive and did a little grocery shopping. Just out of curiosity last night, I decided to dangle my magnet and see if it would attach itself and sure enough, it attached. That oughta tell you how much swelling I have. This recovery process is just so hard on me... :)
And today, I woke up with a slight metallic disturbance amidst my taste buds. This is new but it is not uncommon. I didn't have this with my first implant. It is pretty annoying and I find that really sugary substances like grapefruit and apples - do not taste good. Other then that, I'm feeling peachy...
Activation is on April 2nd!
Sunday, March 01, 2009
I know it has been a while since I have brought good tidings to my blog. I have been poked, prodded and even had a sheep thrown at me as means to inquire into my whereabouts. The sheep did me in. But first, I like to take the time to thank the highly anticipated gazillion snowflakes that I will have to shovel and then risk life and limb to drive to work tomorrow for the time to sit and down and update this blog.
The breaking news that I have is that in a week on March 9th, I'm going bilateral. That's right folks, I am going under the drill again and getting my right ear implanted.
The countdown begins now.
Sunday, January 04, 2009
Every morning before I begin to assemble myself, I read Perez Hilton as well as CNN news. I happened to notice that the Perez posted a video by an Aussie pop singer named Sia who uses Sign Language in her latest video, "Soon We'll Be Found". I fell in love with the song, the video, the psychedelic utopia of trippy colors and decided to caption it.
If you cannot view the video, click here.
Why did she choose to sign in her video?
"Sia decided to sign as well as sing the song, in honor of the language and those who use it to communicate. “I've always been obsessed with the beauty of sign language,” Sia explains. “To ignorant hearing me, the movement and expression appears as a dance -- a beautiful, emotive dance. But the real beauty is the communication hidden within these perfect shapes.”"
But I can't tell what the hell is being said after 3:30 seconds. I think it is vocalizations with her repeating "I know we're lost but soon we'll be found". So if anyone with better ears then mine, not an impossible feat might I add :) could take a listen to the video and figure it out for me, that would be absolutely superb :)
Friday, January 02, 2009
Last year is now a form of the yesterday.
This year is now a form of tomorrow.
And with this new tomorrow, delivers answers that yesterday couldn’t provide.
Seriously, with the new year, comes new answers. The short version is that I do have Enlarged Vestibular Aqueduct Syndrome (EVAS) as confirmed by the CT Scan. If you have absolutely no idea what I am talking about, a nimble little summarization of my last post:
None of the medical quacks I have seen in the past have managed to figure out exactly WHY I am the way I am - deaf and the only one in the family too.
Fast forward to twenty-four years later, my cochlear implant surgeon discovers that I have an Enlarged Vestibular Aqueduct on the CT scan or MRI film. Uncertain which one he had used to diagnose EVAS but I was happier than a pig in poop that I had an answer. In my eyes or ears, depending on what orifice you want to use, it was the golden grail of my deafness. My surgeon kept the CT scan films because that is what he is going as a guide to implant my other ear and sends me home with the MRI films.
Seven hours later around eight o'clock at night, I was sitting in my favorite chair with my dog asleep at my heels dreaming of the freshly baked carob chip cookies and peanut butter barkcuits, I just happen to be nosing around in the envelope containing the MRI films and discovered that most of the films don’t belong to me.
In my appalled state, my findings immediately tainted the doctor’s diagnosis because I was unsure what films he used – the CT scans or the MRI films. My dog woke up at this point.
Before my eyes glazed over in premenstrual madness, I could see that the information on the MRI films gave me the name of the facility, the patients name, date of birth and the date the tests were done. Very convenient. The date matched the date that I had my tests done. So, the radiology facility that I had the tests done at had given me the wrong MRI films!.
I've been quite the busy little bionic bee trying to get to the bottom of this but because of the holidays, it has been a slow crawl. Note to you all, just in the case where you feel the desire to go snooping around around your medical files, do it during normal business hours. It will save you much grief. But with just a couple of emails, I could confirm that my surgeon used the CT scan films to determine that I have EVAS. Whew! To alleviate any doubt, I had them double check to verify that all my CT scans belong to me.
This brings me to shifting my focus on the facility where I had my CT scan and MRI done. I shall return the MRI films that do NOT belong to me but I just want the radiology facility to provide me with a copy of my MRI films which they are giving me a little issue. I’m in duel mode right now for that. I want them to reread my films because this mix up has created a little thundercloud of doubt about the authenticity of the MRI report.
In the grand scheme of whole medical screw up, it was most likely a very honest mistake that I ended up with someone elses MRI films. It happens and no one got hurt, thankfully. Logically, I would have liked SOMEONE to have caught this instead of me discovering it over a year and half later.
But back to the fact that I have an answer which is all I ever wanted. My mother always had it in the back of her mind that maybe it was the antibiotics she took when she was pregnant with me when she had pneumonia. Ototoxicity is a real issue, so it was plausible. My father always had it in the back of his mind that maybe the piece of meat I swiped off the counter that caused E. coli that could have caused it. I had a high fever with that, so that could have killed my hearing. I always wondered which one of my many childhood illnesses that I had could have caused it. I mean I was anemic, I had blood transfusions, I had my tonsils ripped out along with my adenoids. I was a sniveling mess of a child with a very lengthy hearing history.
It is a huge relief to know it was something that I was born with and it was inevitable that I would become profoundly deaf. It was all me and it was meant to be.