Finally an Update!

Hey all! Thanks for checking in again!

Yesterday Josh and I spent a good 8.5-9 hours at Mayo Clinic. I had 4 appointments I think so I'll just go through my day- bear (bare?) with me, I just may ramble!

We started off the day leaving home at 6:15am after very little sleep for the both of us! I had the MRI first- all is well in my head, my nerve are intact, the cochlea looks "healthy" so it's all still a go!

I had other appts. where I selected the brand and color of my implant and headpiece- I chose Advanced Bionics- Harmony. Drs. assured me that I could not go wrong in making the CI choice as they recommend all of them equally. The AB's (Advanced Bionics) do not come with a remote but you can change settings manually or have it be automatic. Pros and Cons to all brands. OH and the color- I picked the blackish "charcoal" color- it makes the color accents (Blue, orange, purple, maroon, red, etc.) stand out more and I like that! I can also get stickers made through a website so I can make the device as funky as I want! ....we'll see...

Next I had to NOT eat for awhile and then take a balance test- this was interesting to say the very least... I had to sit in a chair- get strapped in and wear goggles that blocked out all light and had a camera on my eyes. This was about 10 minutes long, the chair spun around (slowly-ish, and rocked a little back and forth- it was to measure my balance system (inner ear). This test showed "some damage to the left ear balance system" ...interesting
Then we went to another room with some minor computer glitches that ended up being resolved- easy test... wore crazy goggles and followed a little red light- what was the most interesting was the WATER TEST... yes they used water- I HAVE to share about this test. First the Aud. sprays hot water into one ear to "stimulate the inner ear" makes you VERY dizzy- and after the spraying is done you have to think outloud- so I counted backwards by 2's, came up with boys names in ABC order and girls names in ABC order as well as counting by 3s or something... anyway- I had to wear darkening goggles again and lay on a table, it was QUITE a sensation. When he sprayed my LEFT ear I didn't really feel dizzy at all, but when he sprayed my RIGHT ear I was CRAZY busy!
-The results of the test told me that I have 87% LESS balance function in my left ear than my right. Basically my whole balance system is reliant on my RIGHT ear. There is no telling when the damage to my balance system occurred but it makes sense that it happened from the meningitis. -I'm not a clutz, I have a damaged balance system!- :D

The last appt. was the "pre-operative" meeting with the Dr. doing the surgery. We talked about how it might be more risky to do the Right ear in the future due to the higher risk of balance issues (any disruptions may make me have a lot of balance issues) so we're sticking with the left ear for sure, and the right ear as a POSSIBILITY in the future but really only if the Left ear implant does not work like it should.

So to make a LONG blog even LONGER... Surgery is August 12th, unknown what time yet as I have to call the night before. Left ear only- Sweet colors.

OH and my "Switch on date" (the day I start actually using the device) is August 26 (and 27th!) so right in time for a good friend's wedding (and the start of the school year)! WOOT!

Thats the update- I like you! Have a good day!

surgery description

This will be pretty basic- from my memory of what my surgery will entail- it could have "wrong information" but it's whats in my head right now... yeah that basic ;)

Getting a Cochlear Implant (CI for short) it's a relatively easy surgery that takes about 1-3 hours and I would be considered an "outpatient," now that's where a large majority of the anxiety sets in, being "put under" when I had my wisdom teeth out and was "under" for 10 minutes I did NOT like the feeling afterwards... or the vomiting or the shakes/ shivers. ANYWAY, the surgery is just a small incision on my scalp just behind and a little up from my left ear- they put the "computer chip" there resting on my skull under the skin, they then put a TEENY TINY electrode (Actually I think there are several on there) into my cochlea which is the size of a pea and resembles a snail shell. I have full trust in the surgeon and am not afraid of the SURGERY part just everything surrounding it. Also, with this surgery there is no guarantee that it'll work well and due to the electrodes into the cochlea it'll damage any residual hearing I actually do have. - so thats a risk I'm willing to take.

Planning=anxiety

Hey all!

The surgery date is set August 12th! I was hoping for sooner to guarantee that I could start back to school on time but on the 12th might be cutting it close. It just may be too overwhelming to re-train my brain to hear in a short amount of time. People have told me that they have great success and can return to some form of normalcy within days of the surgery. Now, I'll be deaf for the recovery period (2-4 weeks) and then I get "switched on" thats where I get completely hooked up- and start re-learning to hear. They say people sound a lot like "mickey mouse" or some mechanical voice, but given time it gets better. I've been told I won't even need to lip read anymore... it's really up to me to give that up though, it's a GREAT evesdropping tool ;)

I've been having a lot of "ups and downs' and of course this all coincides with buying a new house, planning a wedding, GOING THROUGH with the wedding ;) starting a new summer job, then the appointments leading up to the wedding... it's pretty ridiculous- Josh is marrying into my new medical bills- lucky him! So the anxiety is really surrounding the surgery, not the wedding- that will all fall into place even if a lot of people ask me lots of questions that I don't care to answer more than once- that might be the teacher in me. Believe it or not, I've found I have little patience apparently! :) Who'da' thunk it?!

Anyway, that is a little emotional update for you all... :) it's a crazy experience to say the least I'm sure many of you have had made decisions similar to this- it's weird to think that at 24 I need a CI, or hearing aids in general? Isn't hearing loss for "old people?" just kidding. but really that thought has crossed my mind SEVERAL times throughout the years!

The next post will be more about the surgery for those of you who don't know much about it.

OFFICIAL

It's official. I qualify for a Cochlear Implant (CI) for both ears. It was slightly sketchy on whether or not I would qualify due to my testing. Separately my ears are horrible. I scored a 0% word recognition score in my LEFT ear and a 22% in my RIGHT ear, but together I scored about a 50%. but in the end I qualify and to make a long story short, yes I want to get one, yes I'm nervous and excited. I could get it as early as the end of July. How exciting is that? I shouldn't have to miss any work! Be a personal attendant in a wedding towards the end of July, and then be well enough to be a bridesmaid by the end of August and start school soon after that!

My medical evals and things have been through Mayo, I have gotten really excellent care there! :)

Here's a little bit I read from Josh Swiller's writing "Wall of Sound" in the New York Times- (Swiller is Deaf who has a Cochlear Implant)
I read this following Passage and thought "EXACTLY IT" it explains what it's like to rely on lip reading and still only understanding 70% of conversations (without lip-reading I currently understand no more than 35% of words read to me in isolation- a 1:1 setting WITH lip-reading I bet I'm about 50-70% depending on the situation)

"What's 70 percent like? It's hard work. It's always hearing the laughter but rarely catching the joke. One-on-one you can hear pretty well, but big gatherings -- high school parties, say -- are just noise falling on top of noise, like ocean waves in a storm. So you develop techniques to feign understanding, limit embarrassment and somehow stay afloat -- the smile-and-nod, the thoughtful lip purse, the "Oh, I have to talk to that guy; great to see you, though." (I didn't learn until years later that this is how everyone, hearing or not, gets through high school.)"

it's finally put into words for me. *sigh*

to do list update

_XX_ Buy a house
____ Plan a wedding
____ Move out of my parents house
____ Get checked out for a CI (evaluated)
____ start a new summer job
____ freak out over extracurriculars at work
____ end the school year on a positive note

One thing done! *WHEW*

uh oh!

I just got a "huge" bill for going to the audiologist- my insurance I'm sure will reimburse but still... boo bills!

Also, I struggled a bit today- we had meetings this afternoon and there were only about 6 of us there but it was pretty difficult to follow the conversation back and forth- very exhausting. I consider today a "bad hearing day" but I think I'll have more of those from now on as ANY little fluctuation in my hearing (fluid or just a head cold) will be more obvious with my already sensitive hearing.

oh well. Josh and I close on our house tomorrow so optimism will need to remain key! Something I have to tell myself OUTLOUD "Stay positive." Then I listen to Sugarland- "it happens" is my theme song right now. RANDOM.