Turned On...

So today I went in and they turned on my implant!

First they put it on and plugged me in to a computer. They tested it to make sure it was working correctly. As I sat nervously waiting to find out what this would sound like, the assistant audiologist informed me that it was all working just fine. Then my audiologist came in and ran a few tests to the tune of an oncoming headache worth of beeps and clicks. Next, she had me indicate how comfortable a series of beeps were at various frequencies. Once that was done, she programmed 4 different sets of volume into my implant. Finally, she unplugged me from the computer,  had me take off my left hearing aid, put in a battery and turned me loose!

I could hear her voice and that of my husband! At first there was almost nothing but static. It sounds like white noise static for those of us old enough to remember such a thing. The voices (including my own) sounded like I was listening to a lousy audio tape recording of them- but they were distinguishable. Between the sound I was receiving and a lot of lip-riding, I was good to go!

I was advised not to wear my left hearing aid at all unless absolutely necessary so that I could get used to using the cochlear implant and deriving meaningful sound from it. She was very impressed that I was able to distinguish and understand voices fairly clearly at the very beginning. She even tested me with a screen in front of her face so I could not lip read the words she gave me to repeat.

Next was my appointment with the surgeon/doctor to follow up on my surgery. As I've mentioned before, my doctor/surgeon is a great guy! He is very knowledgeable and skilled. He checked out my ear and spoke with me about the few nights of bleeding I had in my ear canal which I had contacted the center about earlier. Apparently I have a hole in my eardrum. While he hasn't had a patient with this issue before- its not unheard of. Due to my tympanic membrane (eardrum) being weak from many years of repeated tubes being put in them and having burst at least once as an adult back in 2008 it was very thin. He put a patch on it to help it heal over and discussed this with me. It was painful, to say the least, and the glue he put in to hold the paper patch in place made me shudder with ickiness, but we hope that it will heal up on its own. I am to keep the ear dry for now and check in at a later time. If the hole does not heal up on its own for some reason, there are a few different ways we can fix it. We'll deal with that if necessary down the road. And so I must go buy those icky wax earplugs again that I so detested as a child. My hair always ends up with wax in it. Such a professional look! *laugh*

As the day went on, I developed a nasty headache for which I had to take my migraine medication to prevent a serious migraine developing. It did the trick and between that and the ibuprofen, I got rid of the headache within the hour. YAY! Lunch also helped.

I have discovered the minor downside to having a surgeon who leaves my head of hair untouched for this operation- I have so much hair that they had to put a stronger magnet in... twice, to get the headpiece to stick to my head! Oh, well. I'm not gonna cry over it THAT'S for sure! It may, however make it difficult to put my hair up. Also, having no feeling in the tip of my ear means I need a mirror to get my processor hung on my ear correctly. The doctor says that this will remedy itself and feeling will eventually return to my earlobe.

I love the T-mic on the processor. If you're unfamiliar with the technology, you can go to advanced bionics.com and look at the Naida CI. It's a little mic that hangs down in front of my ear canal and catches sound as the ear would- naturally. I think it's a brilliant idea! Why has no one ever thought of this before?!

Normal, BTE (Behind The Ear) hearing aids use microphones on the aid itself positioned close to the ear hook, and further down (for front/back sound). And while they're effective, they aren't anywhere near as effective as the natural formation of the ear at catching and channelling sound. I look forward to the benefits that this can give me and as I discover them, I'll definitely share!


So now I've had my implant on for 3 hours and it's adapting nicely! (or maybe I am?) I'm still getting lots of static- background noises tend to just be static right now. Everything sounds a bit fish-bowl-y at the moment, but I'm sure I'll adjust. I can hear my keyboard clicking, and oh my the AC unit outside my window is OBNOXIOUS!! All-in-all, though the programming in the processor seems to be working well and recognizing sounds as background sounds and giving them less priority in amplifying them. The car ride home was trying my patience and the music from the radio was mostly just music, no lyrics but then how do I know if it even had lyrics? *laugh* I usually listen to music on my iPod through my car stereo on my morning commute. I'll let you know how that goes tomorrow.

I am looking forward to next week when I will go back in and have programs put in for my roger system and all the fun bits! Did I mention how many bits and pieces there are?! OH MY GOSH! They sent me home with a box full of stuff so big that it barely fit into the backpack they gave me to carry it all in! And just so you know... there's a ton of stuff inside that box, too. I'll get into each piece and part in later posts as I use it.

Side Rant: Ok and seriously, how many pockets does a backpack need?! I'll admit that I haven't bought a backpack in MANY years, but holy moly! No wonder it takes the school deputy 20 minutes to search a backpack these days. They add pockets and hide-holes for everything, and yet continually tell us how bad these things are for our kids' backs. I don't get it. End Rant.

Any how, So I have a charger that will charge up to 4 batteries at a time, 3 batteries (2 pictured, one on my head), an electronic drying box and stuff that goes in it (thats those yellow thingies), a case for my extra processor, 2 extra head pieces with a pretty ruby red cover, an extra cord, and as I ordered a set of waterproof exterior pieces, those as well. They can be used out of water if necessary, but the waterproof box for the processor is something I will have to purchase separately- and at a steep price. Also as part of my package, I got a roger receiver and roger pen. I'll get into what all these pieces are for and how they work later because basically, I can't use any of it yet. This week is "learn to hear on the thing" week.

I have learned that it's difficult to put the headpiece on with my hair up in a ponytail- I assume this is because a) I have no idea where the magnet in my head is, and b) I have a ton of hair.  I'll let you know how my skill in this area goes as well. It only took me about 2 months to figure out how to put a contact in the only eye I could see out of (ergo, without a mirror to help me aim). Once I figured it out, it was like riding a bike- you never forget how. Hopefully it will take me less time to master the processor/headpiece putting-on-ing!

(And bonus: I learned how to edit photos on my Mac... hahaha!)

Recovery the rest of week 1

Well I guess I fell off the proverbial horse pretty quick. I totally failed to post the last half of week one. We went to visit the in-laws on the other side of the state and due to lack of wi-fi, I gave up. We had a wonderful weekend relaxing with my mother and father in-law on the east coast. I got to visit with friends close by that I rarely get to visit with and in general had a great time!

I'm still sleeping upright, and not in much pain. A little discomfort is about it. I have, however discovered that with my ear in its current state of repair is sensitive to weather changes and is a bit temperamental when it gets cloudy and dark. I've always been sensitive to weather changes and pressure systems so I suppose this is just an extension of the usual for me. Ibuprofen was as usual a workable cure.

I went back to teaching today. It went well and I daresay the doughnuts I brought in for my co-teacher and interpreters did not go amiss. My classroom still seems to be only vaguely air conditioned and about 5 minutes after my arrival I had already pulled my nicely styled hair up and was sweating to death.  Welcome to working in the public schools.

My students seem fascinated with my progress in receiving my implant and are asking lots of questions and are curious to see my stitches. I happily oblige them because several of them have implants themselves but received them so young (average age of 2 yrs old) that they don't remember getting them. Often Deaf and Hard of Hearing students need help in understanding their hearing loss and assistive technology as well as their accommodations afforded to them under the Individuals with Disabilities Education Act (IDEA). A self-advocacy goal often makes an appearance on their Individual Education Plan (IEP) that they will be able understand their hearing loss and assistive technology and explain it to a peer or adult. I have taken the time to share with my students the literature that my doctor gave me regarding the 3 major companies that produce cochlear implants here in the U.S. They all have excellent pictures of the ear, placement of implant and of the implant and processors they make. I have students with all three types of implants. They often do not understand what is in their head and how it works. I am sharing this journey with my students in order to help them better understand the technology they and their friends use. It is important to understand the benefits gained from and limits of the assistive technology that they use.

Recovery Day 3

Ahhh how glorious it feels to have clean hair!! Don't get me wrong, the Doc did a spectacular job and didn't harm a hair on my head- but there's goo.... and hair stuck in weird positions due to said goo. Up until now I've only been allowed showers from the neck-down. Today I finally got to wash my hair.

Showering was a bit of a nuisance because we have a 3.5x3.5 ft. shower stall and no tub. The whole "no bending, lifting, pushing, scooting, etc." rule is not doable in a tiny shower stall with nowhere but the floor to store shampoo and such. I'll admit to bending the rule a bit. It's not like I can fall over in the shower- it's too small.  I also had to stick a vaseline covered cotton ball in my ear to keep it dry. BLEH! It's a good thing I can't feel that ear or I'd be grossed out.

I haven't been sleeping wonderfully. I'm not sure if it's because I've chosen to sleep sitting up with a wedge pillow behind me for support, or because the meds have me all messed up. I'm in no pain. There is some mild discomfort- especially when sleeping. I can't sleep on the side they placed the implant on while it's still healing, obviously. My neck gets stiff often and I am waking up a lot.
Not to mention that every time I wake up, my derpy cat thinks it's time to get up and have a can! I've mentioned to him several times that I physically can't feed him (no bending restriction, remember?). He disagrees- profusely, with snuggles, and dough-making on my body parts, and loud purrs. Its obnoxious and I end up locking him out of the bedroom around 4:30AM. He then howls at the door all morning. I'm Deaf. I can't hear it. I sleep on in bliss while my husband listens to the cat howl. Being deaf has it's advantages.

It being Memorial Day weekend and all, my husband has decided we should go up and visit his family on the other side of the state. We'll also be visiting with other friends and chosen family while up there. I think he's secretly just trying to keep me out of my parent's newly refinished and now heated swimming pool. They live a few blocks away. I think I even own a bathing suit- somewhere. I only live in Florida.

Recovery Day 2

Well by 5 AM I'd had it with the packing around my ear. I forced myself to wait until a reasonable hour (around 8AM) to take the thing off!  First though, I put in my contact. Finally I can see again! Then, I promptly took all the stuff off my ear. I'll be nice and just say EEEEEMWWWW.. and get on with it. It didn't hurt and I had my husband gently dab at the gore and goo with hydrogen peroxide per the instructions sent home with me from the hospital. My ear is full of blood and gore and I can't really do anything about it. I have to keep the inside of my ear dry. I'll admit I got nauseous and had to resort to the zofran they gave me. I quickly recovered. As a side note- The doctor said I could take the packing off of my ear in 2 days- I am following instructions with enthusiasm!

I can't feel my ear. It's numb. I have mild tension on that side, I assume from the stitches which I am informed are tiny and right against the base of my ear- totally unnoticeable and probably also from having a small magnet and hard drive now inside my skin on that side. I don't have a hand-mirror ( I know, what kind of girl am I?!) so I have no idea what any of this looks like. We applied the topical solution as instructed to my stitches and I was able to very gently run a brush through my hair so I don't look like a scary beast. I'm still wearing boat-necked shirts and soft, comfy clothes due to my "resting" status.

I got online to check my school email and keep up with happenings to find that the soon to be retired IT guy is re-imaging all of the school computers this Friday and I needed to save all of my files. So my wonderful husband drove me into school so I could save all of my files on a flash drive. I saw my students who, of course, all wanted to see the wound. I teach middle school. I also received a plethora of adorably misspelled "get well" cards from all of my students.

I came home and took a half-nap. It doesn't count as a whole nap when you wake up every 5 minutes from the cat climbing on you. *SIGH* 

Recovery Day 1

Day 1 of recovery: Still no pain- no meds are necessary. Very little dizziness. All is going well. I'm up and about just fine and trying to remember I'm on restriction from bending, lifting, pushing, anythinging!! I also still can't see. The being blind is getting aggravating.

I get creative and pop a lens out of an old pair of glasses so I can at least see when I HAVE to. I look like a total idiot, but oh well.

I snooze off and on throughout the day and decide to start this blog. I hunt down a list of free blog sites and pick one. I've got my 21 inch Mac screen 4 inches from my nose and zoomed all the way in. I can still barely follow what I'm typing and can't see the keys on the keyboard. *SIGH*

I'm still trying to figure out this blog-thing. I get the typing part. I can do that. I still don't know how to give people the link, or how to "set it up" so it looks like something. I'm not sure if it's because I just know nothing about blogging or whether this is somewhat medication induced fuzziness. I decide  to deal with it later. Get the beginning parts down before I forget. Got it. Done...

Surgery Day

So it's the day of my surgery. I am both anxious and not. I am in a hurry to get this over with because I haven't eaten since the night before. I am coffee-less, which is dangerous to those around me. I am food-less which means I am also grumpy. I am beyond incensed when I arrive and they ask for a urine sample but I haven't been allowed any fluids since midnight the night before. REALLY?! I ask... I eventually get over it.
They take me in and dress me in my fairly dignified gown (six sizes too big, of course). I sit in the bed and wait. They come in and poke me pointlessly for 10 minutes before they stick me with a needle and can't find a vein where they want to put it and finally give up and put the IV needle in my elbow. All is well. They give me my meds and cart me off. I'm out within 5 minutes.

I wake up and say hi- and go back to sleep. I wake up a few more times and eventually get something to drink- iced apple juice of the GODS!! I happily slurp it down and stay awake long enough to be discharged. I'm not too dizzy. No pain. My husband informs me that the doc told him all went well, and showed him pictures. He was not so thrilled to see those. They're a little gruesome, but hey, who doesn't like to have pictures of the surgery they just had, right? Oh well.

So we run through KFC on the way home and I happily gobble down food. We get home and I take a nap sitting up. Still no pain, minimal dizziness. YAY!

My mom has left me buttercream iced cupcakes on the table.

I rest up and text friends and family that all is well, with my iPhone 2 inches from my face. I can't put in contacts until two days later after the anti-tearing meds they gave me during surgery wear off.

Considering the risks

So there are some risks to having a cochlear implant surgery done...

Most of those risks are minor- but must be considered carefully. There is a small risk of meningitis. After all, they are drilling a small hole into the skull to fish that electrode through. That risk is minimized by a few vaccines you are required to get before surgery.  Then there's the partial facial paralysis that can happen if the wrong nerves are fussed with. Again- this doesn't happen very often anymore as surgeons are practiced at placing the implant very precisely. Then comes the more annoying than serious side effect of having a metallic taste in your mouth for a while after the surgery because of a nerve they often get close to during placement. Also bouts of dizziness for up to 6 months after surgery. This is not a comprehensive list of side effects. This is what I remember off the top of my head; But it should be made clear that there ARE possible side effects that are very serious in nature. It is important to weigh these carefully against benefits. For myself- I decided that it was worth it.

So after all the tests and requirements, weighing in of risks vs. benefits- I decided to go for it. I set up a time and within a month, had a surgery date of May 23rd. Wow, I thought...This is really happening!

I Anxiously awaited the date when I would go in for my pre-operation check-in. I spoke with my doctor/surgeon, picked out all of my equipment and spoke with my audiologist. I picked up all of my prescriptions that I would need afterwards. I had them schedule a post-op. ASL interpreter so I could get directions from nurses and doctors. Being Deaf, and mostly blind (my eye sight is awful) and not being able to hang glasses off my ears nor wear contacts due to having surgery, made it so I needed to be able to see the directions given to me by a human being who could get up close enough for me to see! THAT was an adventure. Everything was ready to go.