Tuesday, May 31, 2016

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.




Thursday, May 26, 2016

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* 


Wednesday, May 25, 2016

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.




Tuesday, May 24, 2016

First Steps

So I got in contact with my local clinic to begin my evaluation for candidacy. You see, you have to meet certain criteria to receive a cochlear implant. You have to have a hearing loss of a certain degree,  and have no barriers to surgery and implantation. The rules are somewhat in flux as to what constitutes the degree of hearing loss needed. The FDA's requirements are far more broad than the insurance company's requirements. Age is also a factor. Implants may be given as young as 12 months old. Don't assume that you will or will not be found a candidate until you go through the screening process. You also must be found to gain no serious benefit from hearing aids- a far less invasive way of helping one to hear better.

Let me be clear- hearing aids and cochlear implants do not "correct" hearing loss. These are not like glasses that restore vision to 20/20. Hearing aids simply make sounds louder. ALL sounds. They have some damping effect on sudden loud noises and some compression in them which will electronically move sounds that are in an area of loss to areas where one can hear. This is not making their hearing better- but rather mitigating the loss by making sounds around the person louder so they are MORE ABLE to hear those sounds. Cochlear Implants bypass the ear by using a processor to "hear" and transmit sound electronically to an electrode placed in the cochlea of one's ear which then sends that signal directly to the auditory nerve. This changes the sound from what a hearing person naturally hears to a more computerized sound.  I'll let you know what this sounds like when I get mine up and going!

Sadly, it must be mentioned that implants are more likely to be covered by insurance companies than hearing aids. I am lucky and my husband's insurance covers both- to a degree. My previous hearing aids were waterproof and being sufficiently advanced, cost around $3,000 each. Our insurance only covered a portion of that- the rest had to be paid out of pocket. Many insurance companies do not cover any amount of hearing aids. This is often why new parents of young children born with hearing loss chose to go the route of an implant (around 100,000 for surgery and implant, not to mention processor)- because insurance covers it (sometimes). I do not recommend making the decision to have one's child implanted solely based on what insurance will pay for. Lets face it- Insurance companies aren't there for your benefit or they would never make a profit. If you are looking at options for your child, please consult a variety of professionals and look at the wide spectrum of options available to your family. If any professional tells you in absolute terms that "this" (any "this") is the only way.... then walk away. There is no "only way." Do what is right for your child and for your family.

Ok, soap box talk complete! On with the show!

I went in for candidacy evaluation and spoke with a number of professionals. I went through a series of hearing tests with and without my aids in to determine my degree of hearing loss and how much benefit I was getting from my aids. I am a borderline candidate. I JUST fit into the numbers the insurance company dictates a candidate for an implant must match. (These numbers are far more restrictive than the FDA's requirements.) I went through an additional set of tests to check my balance, eye coordination and auditory nerves. I went through a set of MRIs to determine that there were no obstructions, malformations, etc. preventing the implant from being successful. At this point, I became a candidate for an implant!

Next would be my appointment with the implanting surgeon to talk more in depth about the implications and risks involved in having the surgery done.

Introducing me....

Welcome to my cochlear journey! This blog is a journal of my journey towards receiving and using a cochlear implant. It is my hope that what I write here will help others who are considering or going through this process to better understand it.

Some history- I am a 35 year old female with a progressive, bilateral sensorineural hearing loss that started becoming noticeable at the age of 23. I grew up as any hearing child would. I suffered numerous inner ear infections as a child and had tubes put into my ears constantly for about 11 years. Thankfully, I outgrew the ear infections and only got about one a year as a young adult until my family moved to Florida when I was in high school. My hearing loss is of unknown cause and so we have no map for how much worse it will get or how fast it will decline. In 13 years I went from borderline normal/mild hearing loss to profound in my right ear and severe in my left ear. Eventually, my audiologist recommended that I look into a cochlear implant if I wanted to try and preserve any of my hearing as aids would no longer be of much help to me.
I have always been a staunch supporter of the Deaf Community and Culture. I am fluent in ASL and absolutely support it as the best method of clear communication for Deaf and Hard of Hearing individuals. I believe firmly that signed language is the natural language of the Deaf and that no child should EVER be denied access to language through signed means. If a child has a firm foundation in signed language, they have a firm foundation in language- necessary to acquiring a second language- to read and write in. I have a bachelors degree in Interpreting for the Deaf/Hard of Hearing in the educational setting. I did this for about 10 years after graduation and loved every minute of it! Unfortunately, my hearing loss got in the way of being able to provide quality interpreting services and I had to find another job. I've never been a huge supporter of Cochlear Implants. The very idea of trying to "fix" a Deaf person into a "hearing person" seemed just ridiculous. I always feared the technology wouldn't keep up with the times. What happens when the tech gets better but what's in someone's head is permanently unable to match the tech?

So why am I getting an implant- you ask?

Well, I'll admit that I was impressed by the forward- thinking of Advanced Bionics. I am now a Teacher of the Deaf and went to a workshop provided by my district where a representative for Advanced Bionics presented their line of products to the teachers whom are seeing more and more students with implants show up in our classrooms, but aren't always trained to work with them. The representative spoke not only about Advanced Bionics' partnership with Phonak- the leading brand of aids for children, but also about how the company is looking toward the future by placing additional hard drive space into their implants for future programming and capabilities. I was impressed. Finally a company that is looking at the fact of technological progress! Technology advances so fast these days that 3 days after you buy a new iPhone, something newer is already out there.

And so I began my research. I looked into all 3 brands of cochlear implants available in the U.S. - Advanced Bionics, Med-El and Cochlear Americas. I read research, looked at sites, asked around and met with representatives. I made my choices based on what I personally wanted out of this implant.

I got into contact with an Advanced Bionics representative- amazingly, the same woman who had presented at our conference. She was very helpful in getting me information and in contact with a local clinic that could evaluate me for candidacy.

My journey had begun!