A Day of Wonders (Cochlear Implant activation)

Tuesday, July 31st, I woke up to this beautiful site:

Tulips from my hubby! What a wonderful surprise!!

I had an appointment with Dr. Kaylie to check my incision at 1pm, and then I saw the audiologist immediately afterward.

Dr. Kaylie was pleased that I didn’t have as much pain or vertigo with this surgery.  The incision looked great, and all was a go for activation….well, to get my processor.  Dr. Kaylie already checked to make sure the Implant was working when I was in surgery, so that wasn’t a worry.  The implant was already working, but I couldn’t hear anything without the processor.  It was time to get the processor.  So off to see Sara, my audiologist.

It was very interesting to have the processor hooked up.  At first I just heard a series of beeps, (that’s what I was supposed to hear).  She was determining the volume each frequency should be. Then I was able to hear speech, and when I first heard her talk I busted out laughing!  She sounded like a cartoon, then I heard Stuart speak, and he sounded like a cartoon…heck, I sounded like a cartoon.  I kept giggling every time someone spoke. Everyone still sounds cartoonish.  A very silly cartoon, like on Rodger Rabbit.  It’s amusing but also quite difficult.  Sara reassured me that all of her patients tell her that it gets better, but everyone is different.  My brain has to be trained to hear a different way.  Now I’m not hearing as a normal person, I’m hearing by having my auditory nerve stimulated.  That kind of blows my mind. (I know my hearing will get better and better as time goes on, but I also know I may never hear like normal ears hear any longer.)

You would not believe how much stuff I got with my processors. Two HUGE boxes full of stuff.

These are the boxes all the parts came in. The coffee cup is in the picture to show scale. It’s a regular sized coffee mug.
This is some of the pieces for the Harmony processor. Yes lot’s of extra stuff. I’m so confused by how I’m going to organize all of this stuff….just look there’s even more in the next box…and this doesn’t include things I’m using, like the processor, and the battery chargers…ect.
This is some of the items that came with the Neptune processor. This is the processor that can be waterproof, and it clips on instead of going behind the ear….but all this stuff, I have to figure a way to organize it, and understand it all. : )

I was joking in the last picture, I was shown what everything did, I just need to work with everything to make sure I understand how it works without anyone telling me, or me having to look it up.  Especially all the connections to hook the processor straight up to the iPod, or things like that.  The different ear hooks for different things with the Harmony.  All the accessories just to make it different looking and some to clip the Neptune on to me, like an arm band and a lanyard…ect.
I have a drying box to keep the processors free of dampness.  Each processor came with one, but I like one better than the other.  There are different carrying cases, but neither will help organize all the pieces.  I feel like I got some very useful items, some fun items, and some useless items.  But it’s been like Christmas for a couple of days just playing around with all the pieces and figuring out how to wear them.

Here’s some photos of me with my CI hooked up with the different processors :

Me with the Harmony processor on….I was playing around with the different colored pieces you can snap on to it. The part that hooks to my head….by a magnet…that’s green, I have that in white, black, red, brown, and light brown….and of course lime green. Where the blue is, I have some funky snap on parts there, they are all silly – stars, rockets, rainbows…ect. Or I don’t have to wear one and it will be a light brownish beige.
This is the Harmony from the side. I have the larger battery on the processor in this photo, so the back part (where the blue is snapped on) is longer than it is with the smaller battery. Of course the larger battery last longer than the shorter one….about 4-5 hours longer I think.
This is me with the Neptune on. I just clipped it to my shirt to show what it looks like. When it is waterproof, it’s actually smaller (you take the controller off, so you can’t change the volume or anything when you are swimming, but who would have time?)
Please excuse the way I look. No makeup, in a sloppy t-shirt…and taking photos of myself. How atrocious! haha

So there you have it.  Me and my Cochlear Implant with the 2 processors I picked out.

Remember, picking out a processor is a very personal thing.  I would never say mine is the best, if you are getting a cochlear implant, do as I did, read up as much as you can on all the ones available, then decide which one will fit in you the best.

Also.  Everyone has different experiences with their CI.  I’m hearing words, some people do not hear words when it is first turned on.  Others hear words that are much clearer than what I am hearing.  Some of it depends on how long you have been deaf, I don’t know the other factors…I just know we are different.  So don’t think my experience is the same experience you will have.

The wonders continue!

OH….I did hear my cat purr last night, and it sounded like purring!  I was thrilled!  The one sound I’ve had a hard time getting used to is my own breath.  I feel that’s strange….hopefully I’ll get used to it soon.  Breathing shouldn’t be this loud….should it?  I’m sure it’s something that will end up just going into the background.  I remember when I got my hearing aids the sound of my hair brushing against them drove me crazy….later I didn’t even notice it.

Surgery went “Perfect”

Sorry I haven’t posted, and unfortunately this post won’t have photos, I promise they will be coming soon.

My surgeon told Stuart that my surgery went “perfect”.  Yay!

Of course, I’m a weird patient….I had a reaction to the antibiotic.  Not a severe reaction, but I looked like a clown.  I had very red cheeks.  Nothing serious, and it faded the next day, I didn’t even have to change my antibiotic, but we had to keep a watch out for a little while.

I also had a reaction to the adhesive they used to attach the heart monitor to me.  I looked like I had huge hickies from an octopus hugging me.  But again, nothing serious.

The pain isn’t bad.  But it is there.  Yesterday was worse, probably because I hate taking pain medication and was tired for feeling drunk.   I am swollen, but I think it’s better than it was yesterday.  I’m very tired, and I’m having some killer migraines.  That’s why I haven’t posted before now.  The migraines made it way too uncomfortable for me to look at the computer.

So….everything is fine!  I’m doing well!

My Cochlear Implant will be activated on the 31st.

I’ll get photos up as soon as I get them off of my phone!  They look much like the photos from the endolymphatic sac surgery…same smiley cup and everything.  Wait until you see how much hair is gone!  (really, not much at all, you can barely tell!)

off to sleep some more.

Thank you all for so many get well wishes.

One Week until Surgery

As excited as I am about getting the Cochlear Implant (CI) next week, I’m nervous too.  I realized this yesterday.  I had appointments scheduled for this week and a dinner with friends scheduled for Sunday, and I told Stuart I just couldn’t do it.  I simply feel like there is too much stress on me right now.  With all the stress, I was making myself sick.

So what am I nervous about?  You would think I’d be nervous about the surgery, but I’m not.  I am nervous about the nurses finding a vein for the IV before the surgery, that is always an ordeal with me.   However, mostly I’m worried that the surgery will be postponed.  There have been so many delays, I’m having a hard time believing it’s going to happen.  I am expecting something to happen…I’ll get sick, my doctor will get sick or have to postpone for some reason….anything.

Now that I realize what has been bothering me so much, I’m dealing with it much better.  I know the surgery will happen.  If some unforeseen circumstance causes the surgery to be delayed , I’ll deal with it.  I know it will happen, if not next week as scheduled then as soon as possible afterward.  I still don’t want to be stressed out more by going to the dentist, having a mammogram, and having a dinner party.  These things will just have to wait.

Now, let’s talk a little about the surgery.  I’m pretty lucky really, about 90% of the surgery has already been done to me.   Since I had the Endolymphatic Sac Surgery, they don’t have to drill a hole in my head.  It’s already there.  All that has to be done is thread the wire from the CI into the cochlea, and place the implant.

There were 3 companies for me to choose my CI from, each had positives and negatives but really they were all pretty close.  I chose Advanced Bionics.  This is a very personal decision for each person who gets a Cochlear Implant, I felt that the Advanced Bionics CI would fit best in my life style.

This is what will be going in my head:

Cochlear Implant from Advanced Bionics. http://www.advancedbionics.com/us/en/products.html

I’m so happy that Duke is a two processor facility.  The processor is the part that you see on the outside.  Since Advance Bionics offers more than one processor, I was given the choice of getting 2 the same or one of each.  I chose to get one of each.  One processor is called the Harmony, it is a Behind The Ear type.  I liked this model because the T-mic (microphone) is located at the opening of your ear, so it will be easier to talk on the phone, and my ear will act as a natural buffer for noises, like your ear normally does.

Here’s a photo of the Harmony Processor:

Harmony Processor – photo from Advanced Bionics website.

The Harmony comes in a variety of colors.  I think I was allowed to choose 5, but it’s been so long now, I don’t remember what colors I chose.  We’ll have to wait and see after I get hooked up.  You can use regular hearing aid batteries, or rechargeable batteries, I’m sure you know which ones I’ll be using.  I was able to chose different types of rechargeable batteries, small and large.  The small battery doesn’t last as long as the larger one.  I ordered both.

The other processor I chose was the Neptune.  The Neptune is capable of being Water Proof, it’s the only CI that is Water Proof, so I can swim in it!  The Processor is not behind the ear (BTE) it can be clipped to different things: an arm band, your shirt, a lanyard, your hair…ect.  The microphone is on the part that fits to the head.

Here’s a photo of the Neptune:

Neptune Processor – photo from Advanced Bionics

I realize the photo above doesn’t give you a good idea of what the Neptune really looks like.  So here’s a few that will give you a better idea:

This photo shows the Neptune Processor. The thinner profile is not water proof, you must add a different piece to the processor to make it water proof, that is shown on the thicker profile. (photo from AdvancedBionics website)

 

This shows the Neptune on a child while swimming. The processor is hooked to the arm band. (photo from Advanced Bionics)
This shows the processor clipped in a pocket, and in a girl’s hair. (my hair is long, I could completely cover the CI in my hair if I wanted.)
(photo from Advanced Bionics)

With the Neptune I was also given the opportunity of picking all kinds of colors.  I know I picked a brown, and the lime green seen above, but I don’t remember the rest.  We’ll all be surprised when I get hooked up.

The CI will be turned on 2 weeks after surgery.  That will be the beginning of August, hopefully the 2nd or 3rd.

Anybody want to know anything else?

I know this is a LONG post, but it’s full of information, right?

We can make it, one day at a time. : )

What to say, when you don’t feel like talking?

Depression by ninykinin via DeviantArt.com

I’m sorry to my followers, my friends, that I have not been around much.  I am a bit overwhelmed by so much that has been going on that I haven’t told you about, and I’ve been sucked into a depressive state.  I keep trying to pull out of it, I even have a new medication, but I’m still just blah.  I wake up in the morning, and often feel awful for the first hour or two, it takes me a while to feel like a real person, then when I actually feel alright, I think what reason do I have to get out of bed?

I don’t find pleasure in the things I used to be so passionate about, like art, cooking, blogging….ect.  I do still find pleasure in reading, perhaps it is an escape?  I also still find pleasure with my husband, just being next to him makes me feel better.

I will be seeing my psych. tomorrow, I’ll discuss this with him, and we’ll see if I should increase the antidepressant I’m on, or try something else.   I’m sure he can help pull me out of this.

If you have been reading my blog for a while, you know that I’m normally very positive.  This turn of emotions has hit me like a wall, I don’t feel like myself.  I need to get my positive outlook back.

The ironic thing about this, I’m actually much better.  I have the weird feelings when I first wake up, but I think that’s because I’ve been horizontal for so long that my cerebrospinal fluid raises a bit, and I have to sit up for a while, and take my medicine before I feel better.

I’m still having migraines, but they aren’t as intense.  I’m still having Migraine Associated Vertigo (MAV), but not as often, and when I do it doesn’t last as long.  Maybe I’m just getting the medication in faster, all I know is it’s better.  I’m still having chronic migraines though, yes they are better, but they still knock me out of commission for a while, so my doctor is starting a new treatment plan.  We want to get it where I’m having much fewer migraines, not just less intense.

No Meniere’s vertigo!

My surgery has FINALLY been scheduled!  July 19th, I will receive my bionic ear!  (my implant is from Advanced Bionics…so I can literally say I will have a bionic ear!)  Two weeks after surgery they will turn on the cochlear implant.  (I wrote a post telling all about the processors I chose, but that’s the one WordPress deleted half of, so I need to finish it again…I will try to do that soon, so you can see what will be hooked to the side of my head.  I’m sure you are all eager to see that!  : )  Just wait until you see it actually on my head!

Other things that have been happening:  We got new carpet.  We replaced our worn out couch.  We had our mattress replaced under warranty…it wouldn’t bounce back.   So the house is full of chemical smells, and I’m so sick!  I keep trying to stay in rooms with less chemical smells, but I’m still coughing so much my throat is sore, my head hurts, I’m so tired all the time….ect.  I’ll be so happy when I can breathe in my own house again!

Tell me is it normal to feel down when you start feeling better?  Yes, I’m feeling better but not to the point that I can do everything I want.  Since I feel better, I’ve begun to resent that I can’t drive, I can’t have that independence.  I hate that Stuart has to be with me for me to leave the house.  I know with the uncertainty of vertigo it’s even dangerous for me to walk around the block by my self.  I resent that I have to be careful of all the food that I eat.  We took a little trip this weekend, and it was so very hard to find food that I could eat.  I felt horrible, every time we wanted to eat it was such an ordeal.  It’s not so bad locally, we know places that are safe, but I didn’t think about not being able to find safe food on the road.   We tried so hard to make sure everything I ate was safe for me, but still I got sick.  On the way home we had to stop numerous times so I could run to the bathroom.  I was so embarrassed to have that happen in a public restroom.  eww.

I used to find it a challenge and a pleasure to cook even with my restrictions.  I thought it was interesting to figure out how to change a recipe so I could eat it.  Now I resent that I can’t eat some things.  That I can’t cook whatever I want.  I don’t like this feeling.

Oh, I almost forgot, I had a birthday.  July 2nd!  My husband is a dear man, he celebrated my birthday for 4 days, and I’m getting my main present today!  So, still celebrating… he’s done something sweet for me every day since Friday!  He really made up for the one time he forgot my birthday!  haha  Funny thing, I thought I was turning 50 this year.  Stuart and I were walking along one day last month and mentioned my birthday, I said that this one was a big one, he asked why 49 was big for me, I said, “No, I’ll be 50!”  He looked at me, and said “No Wendy you will just be 49”.  I was sure I was going to be 50!  He said, “What year is it?”  I said, 2012….Ooooh!  I guess I’ll be 50 next year.”  How silly was that?  Here I’d been telling people for months that I was turning 50 this year!  hahaha

Well, I think that’s all I can purge out of myself at the moment.

I will try my best to blog more often, I really want to become passionate about it again.  I’ve missed my friends.

Wonky, Sloshy Head

Image from deviantArt. “loose” by pehdtsckjmba

If you have Meniere’s, I know you know what this title means.  For the past few days, (actually I think it’s only been two, but it feels like a week!), I’ve had the wonky, slosh head feeling.  I dare not move my head too fast or I’ll fall down, really, I did this yesterday!  I haven’t felt like this in a few months, I wonder what has started it now?

Could it be….

  1. Hormonal Changes?  It’s that week, but it hasn’t started yet.
  2. Missing one of my meds for a day and a half?  (that’s 3 doses)  This is what Stuart thinks it is, but I’m wondering if part of that isn’t just him feeling guilty because he forgot to go and pick it up.   (it was Buspar for anxiety and panic attacks – these started in January, I haven’t felt more anxious the past couple of days, just wonky!)
  3. The weather?  We have had some big weather changes almost every day.  We’ll have beautiful clear skies, with a lot of heat…and then we’ll have a lot of rain all of a sudden!  But this has been happening for weeks, so why bother me now?  (it has been increasing my headaches, but I haven’t noticed the disequilibrium before.)
  4. It’s just that time?  We all know Meniere’s is NOT predictable.  So maybe this is just the monster saying hello.

I’m still so grateful that I haven’t felt like this in a while, actually I’m not sure the last time.  Not much since the surgery in December.  I have to say, I’m thrilled with the results of that surgery.  I have only had one mini vertigo attack caused by Meniere’s since my recovery.  Yay!  The Endolymphatic Sac Surgery was a big success for me.

(I’m still waiting on our insurance company to send the right type of letter to Duke, so I can get my Cochlear Implant surgery scheduled.  They have been so evasive about this, how hard is it to say that this is covered under our plan as of this date with an in-network doctor.  As long as our plan doesn’t change everything should be the same.  NO, they send a letter saying they can’t give a predetermination, because the plan may be canceled or changed, the doctor may not be in-network…ect.   They never even say if it’s covered by our plan at the present time!  What a pain!  So I won’t be getting my CI activated before my birthday….I’m so disappointed.)

I promise to write a post about this whole journey, and show which processors I chose, as soon as I feel a bit less wonky.

 

Hard to Get Started Again…

I miss blogging, I miss my blogging friends….but it’s hard to get started again.

Now I think of things that have happened since I’ve been away that you don’t know about, and things that are going to happen….so much to talk about I’m overwhelmed.   Eh….maybe not so much.  My life really isn’t that exciting.

I went through a bout of depression, that knocked me off my feet.  By that I mean, I didn’t want to get out of bed.  I’d wake up and think, what reason to I have to get up?  I couldn’t think of a reason, and the sleeping side effect was not helping!

Vancouver Sunrise by Lauazee from DeviantART http://fav.me/d32s7vm

I know part of the depression started when Sandy died.  But the biggest problem is a bit strange….at least to me, my therapist says it’s normal.  I’ve been feeling better.  The Meniere’s isn’t bothering much at all since the surgery in December.  The Intracranial Hypertension (High CSF), is minor and under control with medication.  My migraines are not as painful, but they are causing vertigo often!  So much so that there is no way I’ll ever be able to drive again.  The Migraine Associated Vertigo (MAV) gives me NO warning.  I wouldn’t even be able to pull over to the side of the road, the world just goes crazy immediately.  I can’t even walk around the block by myself, or do things in the yard.  I tried one day, and it did not end up good.  So I’m stuck in our house, unless I have someone with me (meaning Stuart).  I know there is plenty I could do in the house, but when you can’t do things you want….well everything else kind of falls flat.

But I’m better.  Really.  It’s kind of funny.  I was watching Sponge Bob Square Pants and he was singing, “I’ve got an attitude of gratitude….”  And I realized I used to every day think about things I’m grateful for, and I hadn’t been lately.  So I started thinking about it, and I felt better.  Also we’ve been talking about fostering a dog, or perhaps adopting.  Sandy was a rescue dog, and we’ve been thinking that taking care of another dog who needs rescuing would honor her.  This has made me feel better about things, I really miss Sandy, and do NOT want to replace her, but the thought of honoring her by helping another dog….that makes me feel better inside.

Now that the sleeping has gotten back to normal, I’m feeling better about other things too.

We went to see the audiologist on Wednesday.  I picked out all the options for the Cochlear Implant (CI) that I want!  We expected to have heard from the insurance by now, but it’s seems to be a big old pain in the butt.  And all I can do is, wait patiently.   I’m not the most patient person!

Now, I’m started… let’s see if I can’t make a habit of this!

Sleeping

There is so much I wanted to accomplish during my little hiatus.  Paying more attention to the spiritual side of me, painting, working on some things in the house….

What have I been doing?  Sleeping.  A lot.

First I’ve been having much more Migraine Associated Vertigo (MAV), one day I had 2 attacks in one day!  That’s never happened before.  On those days I understand why I’m so whipped out, but there are many days where nothing has happened, but I feel like I can’t keep my eyes open.  I’m wondering if one of my medications is bothering me, but nothing has really changed recently.  I was taken off one drug, but nothing was added when this started.

On the 12th I had the Pneumovax -23 vaccine.  It’s a vaccine for 23 different strains of pneumonia.  Including one that causes meningitis.  This vaccine is required for anyone who is getting a cochlear implant.

Unfortunately, I’m one of the people who had side effects to the vaccine.  Including extreme soreness of the injection site, and my whole arm, fever, swelling of injection site, redness of injection site, diarrhea, and extreme fatigue.  Normally, all of the side effects subside within about 5 days, but some people feel some of them (especially the fatigue and malaise for 14 days or more.)  I think I’m in the more category.

This has been an experience.  Most of the symptoms did disappear after the first few days.  The injection site is still a little pink and warm to the touch, but I can lift my arm, not fever, the extremely gross diarrhea didn’t last long, I’m grateful to say.  (too much information following) – One day I was having loose stools, nothing serious, but I felt so exhausted, so I decided to take a nap.  While I was asleep the diarrhea struck, it didn’t even wake me up!  What a mess.  That was a scary thing indeed, for a long time I was afraid to go to sleep, but I was so tired.  We decided to put a pad under me on the bed so I knew if something happened I wouldn’t ruin the bed, then I was finally able to go to sleep.  But I had 3 times where I had to RUSH to the bathroom before sleep finally came…and I’m happy to say the extreme diarrhea stopped.

Still I’m tired.  It’s been 19 days.  I don’t think this is just the vaccination.  I think it’s a combination of MAV (yes I’m having it almost daily, luckily this vertigo isn’t as intense as my vertigo from the Meniere’s.  It is easier to get through.), some medication, and probably just some of the stress from everything.   Plus, maybe some of the medication.

I am putting together a post about my journey on my way to getting a Cochlear Implant (CI), mostly it’s a lot of waiting.  Next week I tell them which processor I’ve chosen, and I find out where we are with the insurance.  I’m really hoping this will happen soon.  I’d like to have it turned on by my birthday…what a present that would be!

In the next post, I’ll explain more about what is going to happen, which processor I’ve chose, and a bit more about the process I had to go through to get qualified for the CI.

Until then, I think I’ll take a nap.  After all I only slept 12 hours last night.  : )

Cochlear Implant coming soon….

On May 1st, I saw the audiologist and ear doctor and as my ear doctor said…..”Your hearing sucks!”

On my hearing tests the word recognition in my left ear was again 0%, and the right ear was 28%.   So it’s pretty obvious I don’t understand a lot of what’s being said.

On Friday, May 4th, I had the official hearing test to determine if I am a candidate for a Cochlear Implant.   Yes!  I am!!

Advanced Bionics – Harmony- Cochlear Implant.

Next step.  Insurance authorization.  It can take 4-6 weeks.  During this time I need to decide which device I want (there are 3 available, and each have some pros and cons…so a lot of reading and research).  Also, during this time I need to think of any questions I may have, and be prepared to ask them all.  However, I understand the surgery, how the cochlear implant works, how I’ll be hearing differently, and most everything I can think of right now.  I’m sure questions will arise though.

After the insurance approves everything, we just have to schedule the surgery…and it’s go.

About 2 weeks after surgery they will turn the device on.  I’ve been warned I may not hear much at first.  As time goes on my doctor thinks I will hear better and better.  If after a few months I feel I’m hearing better out of my left ear than my right, it is a VERY big possibility that by the end of this year I may be getting a second CI.   They say if you need 2 it’s better to get them close together if possible.

I was told that I am in a good place about all of this, I’ve only recently lost my hearing and people who get CI’s who recently lost their hearing normally do much better.

Right now, I’m excited at the possibility of hearing again…but cautious.   I know hearing through a CI is not the same as hearing normally.  I understand all surgery carries some risk.   So naturally I’m cautious.

But how would you feel if you were told that in just a couple of months you could go from 0% word recognition, to hearing again.   Yes, I know I may not understand everything in the beginning…heck, I may not understand anything….but it will come.  I will be able to hear again.

**In other news about me……   The migraines are so much better!!!  I had another round of steroids, and hopefully they have stopped the cycle.   (There is some doubt right now that I have Intracranical Hypertension.  If I do, it has not escalated, and the medication that should help didn’t help much.  The migraine treatments have helped much more.  My last lumbar puncture did show high CSF, but not very high.  Actually, it was pretty low in comparison to most people who have IH…..so we don’t have to worry about a shunt any time soon, hopefully, never!)

Word Cloud – #HAWMC 30

Today’s Prompt:  Word Cloud. Make a word cloud or tree with a list of words that come to mind when you think about your blog, health, or interests. Use a thesaurus to make the branches of your “tree” extend further. http://www.wordle.net/

I did a little bit of a different take on this prompt.  I hope you like it.

Word Cloud Collage by W. Holcombe 2012, April

Personify Your Health – #HAWMC Day 28

Prompt for today….Personify your health. If your health focus were a person – what would they be like? Describe them. Visually, emotionally, physically, and personality-wise. What kind of person are they?

I’m again using one of the Bonus Prompts.  I liked this one more than the original prompt.  However, once again, I took a different take on it.  Recently I made a mask showing what I looked like on the outside to most people, and then on the inside I showed my true self.  I felt this answered all the questions put forth in this prompt, but with a little creative flair.

Some of you have already seen this, but I think it’s worth repeating, and for those who haven’t, I hope you enjoy!

Outside of Maxk. by W. Holcombe
Inside if Mask
by W. Holcombe
Mask Inside Top
W. Holcombe
Mask Inside Bottom