Friday, December 30, 2011

My Version of Surgery Day

I know it was 10 days ago, but I still feel like I need to post my version of the surgery.  Maybe for my own family members who decide to get an implant one day.  I have dozens and dozens of family members with severe to profound hearing loss.  Not one has gotten a cochlear implant.  I hope with my success, others will be more willing to consider it.

As Evan said in his post we arrived to the hospital at 10 am.  The first thing they did is a pregnancy test.  Though they wouldn't tell me that.  It doesn't take long to put two and two together.  The nurse asked if I had a hysterectomy.  Uh....no.  She said they would need a urine sample.  I told her I wasn't pregnant.  She said "we don't do social health histories."  Hahahha.  Cracked me up.

They weighed me (which I found out later is how they determine the amount of anesthetic you need), took my blood pressure, all that jazz.  I had to strip down and put on the lovely hospital gown and accessories, including booties and a cap.  I was looking HOT.  Especially since you can't have makeup, anything in your hair, or wear contacts. 

And then we waited.  And waited.  And waited.  My Doctor came in and reassured me he got a good night of sleep (he has a new baby and I told him at our appt last week that I hoped he slept the night before surgery).  We talked a little bit about the devices and about surgery.  He said we had to wait for the operating room to become available.  We waited some more.  Finally the anesthesiologist came in and asked me some questions.  I can't remember any of them.  They must have been about my history with anesthetic.  She waited as I said goodbye to Evan and then walked me into the OR.  It was weird to just walk right into an operating room.  I couldn't see because the nurse took my glasses.  But it was so bright.  The last two times I've been in OR it was to have a baby and I was wheeled in and stayed awake the whole time.  I knew I would be put under for the implant surgery but I was not sure exactly what to expect.  I hopped on this tiny operating table myself.  Doctor came over and said hi and confirmed something.  Of course I have no idea what any of the medical staff were saying because they all had masks on.  There were a ton of people in there.  At least 10.  A nurse asked me my birthdate and what surgery I was having (I had to answer that probably at least 6 times that day, guess they wanted to make sure they were operating on the right person).  I was laying down looking up at the lights while the nurses wrapped me up in blankets.  My last conscious thought was "that's so nice of them to put blankets on me."

Then I woke up.  Just like that.  I was in recovery.  I immediately knew two things.  One, was that it was late.  Two, that I only had one implant.  I had gone over this moment in my head probably ten times before having surgery.  Every time I saw myself wake up in recovery, my left hand went to my left ear and there was no implant.  I never saw it any other way.  I think this was God's way of preparing me for only one.  So when I woke up in recovery, I heard the nurse say my name.  That only meant one thing.  My left hearing aid was in.  Or else I wouldn't have heard her.  I put my hand up to my left ear.  No implant.  I asked her what time it was.  She said "you were in there a long time, it's 7:45."  I went in just before 1:00.  So I knew there had been complications.  The nurse was asking me all kinds of questions which I couldn't seem to make sense of.  I just wanted to know what happened so I asked her "why one?"  She said something about the Dr telling me in a bit.  She asked if I was dizzy.  I wasn't.

The Dr came in and I grabbed his hand.  I don't know why I did that.  It's like I felt connected to him and wanted him to know how thankful I was.  He asked me if I was dizzy.  I didn't answer him.  I asked him "why one?"  He said he would tell me later when I was more with it and asked again about being dizzy.  I wasn't.

Evan came in and I asked him "why one?"  He said he would tell me later.  He may have asked me some questions but I don't remember.  All I wanted to know was why I only had one implant and no no one would tell me.  I began to get scared that maybe I didn't have either implant.  That they had opened me up but couldn't put one in.  People kept trying to talk to me and keep me awake.  All I wanted was an answer and then to sleep for the next three weeks.  I was so tired.  I just couldn't keep my eyes open.  And I couldn't comprehend what people were saying other than repeatedly asking me if I was dizzy.  No, I am not dizzy!!!

I was in and out of it.  A different dr came in and I tried talking to him but he spoke too fast.  I wanted to tell him he was talking to a deaf person who was recovering from surgery and he needed to learn how to speak better.  But the words wouldn't come out, darn it.  After he left, I told Evan I couldn't understand him and he said he answered the questions for me.  I still don't know who was.  I keep forgetting to ask Evan.

Finally my doctor came in and I again asked him "why one?"  He began to explain what happened.  About damaging two devices and not wanting to risk operating on my left ear.  I told him he owed me.  Hahahaha.  He cracked up and said "people on anesthetic say the funniest things."  I wasn't joking and I wasn't high.  Well, I was high but that was a conscious thought.  I remember telling him thank you.  Next thing I remember he was back but was wearing his street clothes, not his scrubs.  So some time must have passed between.  He again asked if I was dizzy.  He said he would be sticking around for a few minutes to see if I needed anything.

The next thing I remember is the nurse making me drink water.  Do you know what happens to me if you have made me fast for 24 hours, have pumped my system with drugs that have put me in a stage 3 of deep sleep for nearly 7 hours and then make me drink water???  Yeah....we'll skip that part.  :)

The surgical center was totally empty.  I was the last patient.  It was just the nurse, Evan and me.  When I could finally open my eyes long enough to recognize how late it was and how long it was taking me to get with it, I asked if I could go home.  Apparently that's what they were waiting for, was for me to ask.  So somehow I got dressed.  I don't remember how.  That husband of mine sure comes in handy!  I think they put me in a wheelchair but I don't remember going from the hospital to the van.  I do remember that we couldn't seem to leave the hospital parking lot.  I opened my eyes to an orange cone blocking the exit again and again and again.  I asked Evan if I was just dreaming that part and he laughed and said all the exits were closed and it took him a while to find a way to leave.

The next thing I remember I was at home in bed thinking about that 2nd implant and feeling a deep sense of peace.  I felt like I needed to tell Evan about it.  He already explained that part in his post.  But I just knew.  I knew that everything had happened the way it was supposed to.  I knew that the doctor needed me as his patient and I knew I needed him.  And I knew that with all of the prayers and miracles that have allowed this all to happen, God was in that operating room.  And he could have allowed that second implant to happen but He didn't.  I'm not sure why.  But I was overwhelmingly happy for the one implant I did get.  After all this processing, my brain went quiet and I fell into the best sleep I have since had!

I've had lots of time to think about how things went down in that operating room.  I've grieved a little bit.  But that's just part of my journey, to allow myself to feel whatever it is I am feeling.  I have worked through it and continue to feel that this is all in God's hands.  It feels like another set of miracles is being reserved for a second implant at a later date.  I'll trust in that.

Sheesh, I am getting long winded.  I told you I have much to say.  I do!!
Day after surgery in my lovely head band :)

Wednesday, December 28, 2011

Confidence Restored

Today was my Post-op follow up with the surgeon.  I am very happy with the way it went!  We took the doctor's whole morning talking about lots of things, including what happened in surgery.  And the end result is that both Evan and I again feel this was the right doctor for me.  We think as he continues to gain experience, he will be absolutely fantastic.

Basically, there was a very high chance I would have left that OR without an implant.  Dr acknolwedged that the problem was he did not make the hole big enough in the cochlea as he was trying to do the "soft approach" which means he was trying to preserve my hearing.  He said he made the hole 5 millimeters.  I just looked that up.  It's .019 of an inch.  When he put the first implant in, it started to go in but he met resistance.  He said that if you meet resistance, you have to stop.  And once you start to put an implant in, taking it out damages it due to the wire in the electrode array.  Apparently you take the wire out as you insert it but can't put the wire back in.  All very interesting things to learn.  So anyways because it started to go in, he thought it was a problem with the device.  So he tried the second one.  It wouldn't go in at all.  That's when he knew he would have to make the hole bigger.  So he made the hole 1 millimeters big.  Which is .039 of an inch.  Who on earth came up with this device??  Gotta research that one.  This is crazy stuff to insert a device through such small openings!  Anyways, the 3rd device went in wonderfully.

The Dr talked about his feelings in the OR (which I eat up cuz after all I am a therapist and always feel more comfortable with a person if I know how they are feeling :).  He was supremely frustrated with himself for not figuring out the hole was too small after the first implant.  I love that he admitted this.  And I think that's why when he went to speak with Evan, he was shaky.  He told me to ask the Audi, when I see her next week, about how he was feeling.  She was in surgery with him the whole time.  He said she commented "Well, I am glad you kept being diligent."  I don't know if he wanted to give up, but I wonder how many surgeons would try again?  He tried again and of course everyone knows that worked well.

He also said he's gone over it and over it in his head and on paper.  He talked about what he learned and totally validated my feelings when I expressed how I was feeling about it.  I am mourning that 2nd implant a little bit but I truly do think everything happened as it needed to.  My time for the 2nd implant will come.  I need to focus on healing and hearing with the first!

We also talked about the facial nerve and the taste nerve and how close they are together and how he has to drill in between these two nerves.  That caused a little complication as the space between mine is very narrow and he was super concerned about the nerves.  He was also concerned about my inner ear causing balance issues, especially with 3 tries of an implant.  There was a super, super high risk of my inner ear being damaged, causing vertigo.  When I told him I haven't been dizzy at all, he was very relieved. 

Random side note, but I'll bring it back, don't you worry.  I remember when an airline (Jetblue I think) had problems with their landing gear.  They weren't able to land properly.  But the pilot still skillfully landed that plane and everyone was safe.  Lots of people said they didn't want to fly that airline after that because of the damaged landing wheels could mean a bigger problem with the planes.  But one of my dearest friends said "I am always going to fly Jetblue now.  I want an airline that can handle equipment and technical problems, because of course they are going to happen!"

I've thought a lot about that pilot landing that plane.  I agree with my friend.  I would want a pilot skilled in handling issues as they arise over a plane that seems to be perfect but has a pilot unskilled in equipment issues.

That's how I feel about my surgeon.  He tried 3 devices but did not damage my inner ear.  He had a very narrow space to work with in between nerves but did not damage or negatively affect either one.  I feel like he is skilled and that he can handle issues as they arise.  I would prefer a surgeon who takes the time to know me and work in my behalf (remember he called my insurance company) as well as not give up in the operating room over a surgeon who has done 500 implants and doesn't give me the time of day.  So all in all, we are happy.

Now......8 more days until activation!  Bring on the shrill voices, beeps and electronic noise!  And by the way, I am feeling better.  Still can't handle the demands of my toddlers (as was proven just today) for longer than an hour or so.  But this will get better.  Dr told me to not do a thing for 2 weeks.  That's hard to do when you have young kids!

Monday, December 26, 2011

The Light at the End of the Anesthetic Tunnel

It's been 6 days since I've been well enough to sit and type.  I think today I've turned a corner.  Thank goodness for my smart phone that has kept me sane in my alert moments!

On AB's website I found the following :
"Cochlear implantations are routinely straightforward, typically taking two to four hours. Because the procedure is done under general anesthesia, you’ll spend additional time in the preparation and recovery areas.  You may or may not stay the night at the hospital, but you’ll be back to your normal routine within a few days."

I've spent a lot of time preparing for an implant.  It wasn't a decision I made lightly.  As part of that preparation, I read and read and read about the device, surgery, recovery and activation as well as the rehab needed.  I find it interesting that nothing I read prepared me for what I've felt the last 6 days.  For some reason, I got it in my head that recovery would be easier than my 2 csections were.  That's not true.  My husband and I both feel that my csections were way easier on my body than the implant surgery.

We attribute that to the general anesthesia that I had to be on for the implant surgery.  Since there were complications, I was on anesthesia longer than normal.  6 hours.  However, at the risk of sounding too negative, I must also say that I have been extremely blessed in the risk department.  My side effects are from the anesthetic, not from the surgery itself.  Sure my newly implanted titanium accessories have made my head heavy.  Sure I get headaches easier than normal (especially when I cry, which unfortunately has happened a lot lately) and I've got a little ear pain but really, it's not bad.  Hate the prescription pain med.  They won't let me have my ibuprofen.  So I've been halving the pain meds and only taking it a couple times a day.  But as I mentioned before, I haven't been dizzy and I have been able to taste.

What I have been experiencing is incredible weakness, negative sleep patterns, inability to concentrate and something else I can't put my finger on.  Something big that makes me feel so out of touch with reality and with myself.  Delusional isn't the right word.  Though I have thought a lot about people with Schizoprhenia the last week.  Loopy isn't quite the right word.  I don't know what it is.  But I don't like it.  And I don't like that I can't identify it.  And whatever "it" is, it's been made worse by my inability to sleep soundly.  I feel like when I sleep it's a hyperalert state of sleep and my brain is way active and gives me all kinds of awful dreams.  I feel awake when I sleep but when I actually wake up, I feel panicky.  Maybe "it" is just simply anxiety.  I am so badly craving good sleep.

However, I think I have turned a corner.  I've been able to sit up at the computer now for about 30 minutes and I'm still okay.  I haven't had to take a pain pill in about 20 hours.  My thoughts are okay.  I'm slightly annoyed that people don't talk about what recovery is like.  Maybe my body is just weird and it's harder on me than every other implantee out there.  But uh, I most definitely am not back to my routine within a "few days."

I'm so grateful for all the tender mercies that have helped me these last few days.  No matter how bad I feel, I have hope underneath it and I am often reminded of all of those in my army :)  And crazy as this sounds, though I have had doubts the last few days, most definitely I would put my self through this again if needed.  Because there is a purpose to it.  And I am so determined to make that purpose work for me.  Even though it took 3 tries to get the implant in, this device IS going to work.

I'm out of steam.  Later I'll post my version of the surgery day.  Back to bed for me.  Love to all.  And I hope everyone had a wonderful Christmas.

p.s. I just woke up from a power nap.  Slept about 45 minutes.  My dream wasn't scary, it was just intense.  But I can identify something else now that is affecting me.  When I'm waking up, I feel exactly like I did after surgery, trying to wake up in the recovery room.  I feel this deep heaviness on my body and in my soul.  Like I'm so deep, I can't wake properly.  So I have this feeling for a good couple of hours after I wake up from a nap or from sleep in the morning.  Which I think is getting better because I used to feel it all the time.  So I'm adding a new feeling to the list of trying to recover from anesthesia-- heavy!

Friday, December 23, 2011

My Favorites

My 3 year old daughter has taken on the role of my walking buddy. She will hold my hand and gently lead me around the room.

My two year old son has taken on the role of checking on me. When he can get away with it, he will run into my room, come to the side of the recliner and pat me. When the sitter of the moment comes to get him, he turns to me and says "wuv you."

Love them. So much.

Thursday, December 22, 2011

Dreams

I have been asleep a lot the last two days. Just realized something. When I dream, I wake up panicky. I can't hear what people are saying in my dreams. That's what makes me panic. Didn't realize I did that. Weird. Thought my anxiety was increasing as I aged but I think its just hearing related. Wonder if that will continue.

Wednesday, December 21, 2011

Mind Awake

Much to say but no energy to say it. I am so happy.

And bonus, no taste disturbance. No balance issues. No facial paralysis. Just tired and a little out of it.

I will write details later. I am so happy.

The Day After

Kristel is doing great! She was able to fall asleep last night and slept the night through...so I thought. I told her to wake me if she woke and needed help getting to the bathroom or if she needed anything. I must have totally been out of it because I didn't hear her or wake the two times she got up - on her own! I was a little upset with that, but she said she felt good enough to do it on her own.

Today she's been more coherent, but still taking it easy. She's been asleep most of the day and only wakes to eat and take pain meds. She just told me that she's hearing a lot of ringing in her right ear (implant ear) and she believes the residual hearing is going bye bye in that ear from what she read about it.

Tonight we get to take off the dressings around her head, which will help make her a little more comfortable. Both the doctor and surgical center called today to follow up to make sure everything was okay. There was a possibility that the doc wanted to see her today, but since she's doing so well - no nausea or dizziness - we'll just be going in next week for the scheduled follow up. Her balance isn't even off!

I am glad the doctor recommended that I stay home today with her instead of going to work. Kristel is also glad and thankful for that, but I hate the fact of feeling bad for missing work! Which is why I hope my home-based internet marketing business prospers, but that's another post for another day on a different blog.

More to come...

God's Plan For Us

Well we are safely home and Kristel is all snug in bed resting. She was able to eat a few saltine crackers and some water to take some pain meds, but soon became wide awake where at the hospital and on the way home she tried, but couldn't. I guess the anesthesia are finally wearing off. Kristel was able to read all of my text messages that I'd sent out to the family and the previous blog posts.

When I went to see Kristel in the recovery room, the first thing she asked me was, "why one?" Meaning, obviously, why only one implant. She was very groggy and totally out of it and didn't want to overwhelm her so I waited for the doctor and for her to wake a little more. When the doctor did come in, he explained everything to her and the difficulties of the surgery. He said it was a combination of her anatomy and his technique. From what I gathered, he did the surgery a different way than the traditional way, which tries and saves some of the residual hearing and not having such a large incision. He admitted his mistakes that were done and how he was able to "figure it out" the third time around...which solidifies my belief of his inexperience.

Leave it to Kristel to look for a Higher meaning of why things went down the way they did. She told me that she felt everything went exactly as it was supposed to. She continued to say even though that our doctor was young and inexperienced he was supposed to perform the surgery. For some reason Kristel needed him and he needed Kristel. Then she gave me some insight that I hadn't thought of before. She said, "I am SO THANKFUL that we were approved and decided upon the bilateral implants because we had a total of four devices [a backup for each ear]. If we had only decided on one implant initially, he would've messed up the one and the back up leaving me without an implant!"

One of the things that attracted me to Kristel so many years ago was her spirituality and ability to feel God's guiding hand in her life. I have no doubt that God is and was fully aware of what did and is going to happen, and such, laid out a plan to have it work out for Kristel to have at least one implant. She feels that she was only meant to have one and it worked out according to God's plan. I am thankful that there was no damage to the facial nerve or otherwise and trust God that she will have a speedy and healthy recovery.

Tuesday, December 20, 2011

Surgery Update

Hello. It's me Evan again. I just got done talking with the doctor and there were some complications inserting the implant into her right ear. There was a total of four implants, two for each ear in case of any problems. Two of the implants were damaged when trying to insert them. The third was able to go in just fine and is currently being tested. All is well with that one and Kristel is also doing well. Since there is only one more implant device left, without another backup, the doctor wants to play it safe and only do the one ear. He said it is possible to still do the other ear a few months down the road, but that won't be an option since our insurance runs out at the end of the month. My new insurance provider that we're forced to change to with my employer doesn't cover cochlear implants.

The doctor explained that the initial problem was that the drilled hole wasn't large enough and the cochlea was in a different position than normal I guess. Not sure how the implants became damaged. So the surgery took twice as long as planned and should have been done with both ears at this point. I am just glad Kristel is doing fine and the implant in the one ear is also doing fine.

The doctor is stitching her up and will dress the bandages and will soon be in recovery. She'll be in recovery for at least an hour before going home. There may be a possibility she may need to stay overnight, but don't think it will happen. If we do go home tonight, the doctor wants to see her in his clinic tomorrow.

On a side note, the doctor seemed really nervous and almost shaky to a point when talking to me. I probably would be too, but I don't know how he does what he does! I certainly wouldn't be able to...but it made me question his experience with this procedure and am not too fond of the possible "educational/learning" surgery for the doctor (i.e. that's good to know for next time).

Just got done visiting with the doctor again. Kristel is in recovery and awake and responsive. I will be going to see her soon. More to come...

Surgery

Kristel asked me to keep her blog updated today. Hello, I'm Evan...Kristel's husband. We were to arrive at the hospital today at 10 a.m. for all the prep stuff, which took about an hour. By 11 a.m. we were ready to go, but the surgical room that was reserved for us was still in use for an "emergency repair" of another patient/doctor. The nurse said it would probably be about another hour before they would be able to get Kristel in for surgery. Almost two hours later of waiting, the anesthesiologist came and got Kristel and took her in to begin the surgery!

Our doctor blocked out 7 hours of his day for the surgery, but is only planning on 4-5 hours of actual time to perform it. He will be starting with the right ear and if all goes well he will then do the left ear. I am still amazed that this is an OUTPATIENT surgery and will be taking her home tonight. It kind of freaks me out and have had butterflies for the past week. I've been more nervous than Kristel, who has been totally calm and collected since Sunday. We both feel that everything will go as planned without a hitch. She's been in surgery for about an hour now so still plenty of waiting time to go!

Morning Of

Good nights sleep. Check.
Presents. Wrapped.
Christmas cards. Sent.
Stockings. Full.
Laundry. Done (well, mostly done).
Bathrooms. Clean.
Kitchen. I have no control over!
Kids. Cuddled.
Hair. Washed (for the last time for 7 days)!
Feeling. Calm.
Surgery. Noonish? Checking in at ten.

Love to all!

Sunday, December 18, 2011

My Fears

Surgery is quickly coming up.  2 more days.  I'm 80% excited and 20% freaking out.  Well, I'm not really freaking out.  But my thoughts are definitely consumed by what is coming.  I really feel that the implants will be able to help me hear better than how I am hearing today.  I don't expect to ever hear like a "normal" person does.  But I welcome anything that's better.  Even if I could hear more effectively again with my assistive listening devices.  I do not feel they help very much anymore though I continue to use them.  Sounds are just become less and less distinguished.  I can hear sound, I just often can't make sense of them.

This last week was my turn to teach Joy School, my daughter's preschool group.  There are 5 kids in the group.  I'll be totally honest.  I didn't hear any of them for the entire 2.5 hours.  Except my daughter.  I have trained her on how to speak to me.  The other kids, bless their hearts, just couldn't make sense in my head when they spoke.  I used my contego and it amplified their voices and amplified noise, but it did not make it clearer.  All of a sudden, I felt afraid that getting implants would just make everything louder, not clearer.  My device always gives me a headache in group situations.  The amplification of the noise is painful.  But usually, the benefits outweigh the headaches.  I've had a headache ever since it feels like!  I'm so needing my ibuprofen (my drug of choice :) but I can't take it the week before surgery.  I think I might give in today though and take a couple anyways. 

I attended church this morning with my sister and her kids.  Her kids were all baptized yesterday and it was wonderful!  My sister's ward (the local congregation) had their Christmas program today with several musical numbers.  I hate musical numbers!  No offense to the musicians of the world, but music is not pretty to me, even spiritual music.  Music is painful to me.  Since I already had a headache, listening to those screeching voices and piano just magnified my head pain.  Why didn't I think to just turn off my hearing aids????

On the way home, I asked my mom, whose hearing is worse than  mine, what she thought of the musical numbers.  She says she's always loved music but choirs don't do much for her as she can't understand the music.  I asked her if it annoyed her or just felt like noise.  She said that never has a musical number bothered her.  She was shocked it gives me headaches.  I don't understand why it's different for us.  Music sounds like screeching to me.  In no way does it sound nice or even neutral.  I can tolerate the kids cd's for a time but they are simple songs.  Twinkle Twinkle Little Star does not give me a headache.  I guess if you add any depth to the music or lyrics, it just becomes noise to me and noise is not pleasant!

Another fear I have is that because I haven't trained my brain to understand music, that I won't be able to understand music with implants.  Music is very important to my husband and I feel like my distaste of it has lessened music on his priority list.  That makes me sad.  I very much want to train myself to appreciate music so that it can become important to him again.

I also fear the actual surgery.  It's kind of a big deal.  But again, the benefits are going to outweigh the risks so it's going to be worth the discomfort for a couple of weeks.  I can do this!

Tuesday, December 13, 2011

Decision Made

Many people have asked if I am getting one implant or two (bilateral).  My insurance, by miracle, approved two.  However, they also say that our out pocket maximum ($2,000) does not apply to cochlear implants.  Yesterday we found out what our copay would be.  About $3,000 for one.  About $23,000 for two.  After much research, thought, discussion and prayer, my husband and I decided to get two.  Basically the price for two is less than what we thought we would have to pay for one.  And the benefits to having "surround sound" are huge.  And we feel that financially, this is our best chance.   And the surgical center will set up a payment plan with us so we do not have to pay it all up front.  My sweet husband says he'll sell his truck if he has too, he wants me to have the benefit of both ears.  There are some downsides.  I will not have any residual hearing during the time between surgery and activation.  Being totally deaf for 4-6 weeks without being able to use hearing aids or other assistive listening devices is not exactly appealing.  This means we will be without my income for at least that long.  And of course with double the surgery, it's double the recovery.  But the decision was made last night.  Bilateral it is.

This morning, the surgical center called and it appears we qualify for financial assistance, bringing the out of pocket expenses probably under $10,000.  Dude.  Talk about the miracles lining up this month.  So, this reaffirmed our decision that bilaterals is the way to go.

Also this morning, the surgeon's office called me and asked me to come in as soon as I could this morning.  Bundled up the kids, stopped Evan mid project and we all jumped in the van and drove to Salt Lake.  Doc wanted to discuss all the test results and discuss our decision to get bilateral implants.  He shared with us the risks that are involved with surgery.  As we are doubling the surgery, we are doubling the risk.  However, the risks are small.  And he will first operate on my right ear, which is the worst ear, if any problems occur, he will not operate on the second.  So I feel the risk is minimal compared to the positive outcomes.

Doc wanted me to get a CT scan.  That was most definitely the easiest procedure/evaluation of all of them thus far!!  Took maybe a minute and it was painless, no discomfort and I didn't have to hear.  Whoo hoo!  It was actually kind of cool to see my skull in pictures.  Now I know I have one for sure.  Hahaha.  The Doc showed me where he would be drilling into the bones and where he would be threading the wires.  Not exactly pleasant to picture my skull being drilled.  It's a good thing others have done this before.  Thousands and thousands of others.  I do not feel like I am a guinea pig.  I feel like this is a safe, reliable, amazing practice that many people have proven to do well with.

I received my hospital instructions.  Is this really real????  I can't quite seem to grasp that a week from today, I will be bionic!  My sweet little girl, after meeting the doctor that is going to "help mommy hear better" asked me "Can you hear me better yet?"  Hahaha.  I am so excited that one day soon I will be able to answer her question positively-- "Yes, my dear, I CAN hear you better and it's just going to get better and better."

Monday, December 12, 2011

Why Cochlear Americas?

Several posts ago, I mentioned I was leaning towards Advanced Bionics.  That is no longer true.  I feel the choice is very personal.  I also feel no one, and I mean no one, should try to persuade you or force you to choose a particular brand.  And once you have decided, you should be supported.  That's my 2 cents.  And I felt it was necessary to say because if anyone on their own implant journey ever finds this blog, I want them to feel rest assured that which ever manufacturer they choose, it WILL be a good one.

Moving on.  I am choosing Cochler Americas.  This is what the system looks like:



Nucleus Freedom system

The major components of the Nucleus Freedom system are:
Cochlear implant (A)
Coil (B)
Sound processor (C)

This is how it works:

 







Thursday, December 8, 2011

Speechless

I do not have the words to express how I am feeling today.  The outpouring of love and support I have receieved is just incredible.  I am so fortunate to count some of the highest quality people on earth as my friends and family.

This blog was set up a couple of years ago with the intent to help me keep perspective on hearing loss.  And I hoped that one day someone struggling with accepting their loss would find this blog and feel peace.  Never did I dream that it would be a tool to be understood.  I didn't realize it would be a way for me to connect with the closest people in my life.  But that's what has happened this last week as I have opened myself up to share it.

Truly, thank you all for being a part of my journey.  May each of you feel as supported and loved in your challenges as I have in mine :)

Wednesday, December 7, 2011

Reversed!

My insurance changed their decision.  I am APPROVED!!!!!!!!!!!!!!!!!!!!!!  Surgery date is scheduled for December 20th!!

Tuesday, December 6, 2011

Humbled

Though this morning started out with some disheartening news, I'm feeling very much at peace.  As the day has progressed, I've learned more and more how big of an army I have behind me.  I feel so overwhelmed at the support I am getting.  Not only from my amazing family and friends but from the professionals.  Cochlear Americas has been absolutely incredible.  My implant team has gone above and beyond.  More and more organizations are getting involved in the fight.  My case just may pave the way for others in Utah to get an implant with my insurance.

The latest news is that the Dr who reviewed my cochlear implant request and denied it did not understand the audiology exams.  He mixed them up, thus the test scores affected my eligibility to be implanted.  My own Dr, the surgeon, figured this out and requested a peer to peer review.  It's a bit scary, in my opinion, that the Dr who had the power to approve or deny me didn't even understand how to read an audiology exam.  So my surgeon and a rep from insurance who has a similar degree, background and experience have set up a conference to discuss this.  My implant team is hopeful that the denial may be reversed.  Of course all of this takes time.  And since the clock is ticking, my army is working day and night.

While my doctor is working on this, Cochlear Americas may be calling in some pretty big powers to be.  Realistically, if my insurance doesn't get their act together, they are going down.  It may not be this month or next year, but they are going down.  They now have national multibillion dollar organizations who are ready to pounce them.

I can't even begin to explain how full of gratitude my heart is.  Not because I want anyone going down.  But because I am not alone in this battle anymore.  I still don't know if it's going to happen this month but my army is keeping my surgery date on December 20th.  They are determined to make it happen.

Denied

My husband called our insurance company this morning and was informed that our request for a cochlear implant was denied.  They are being sooooo difficult.  Of course it is discouraging but I am still hopeful.  My surgeon and Cochlear Americas is on top of things and trying to work some magic to still make things work out.  There is a slight chance of hope I believe.

Monday, November 28, 2011

My "Come to Jesus" Moment

So, as I'm sure it's been obvious to everyone, I've been pretty discouraged.  Bordering on depression even.  I now struggle ALOT at work.  This is bad.  When you are a therapist, you MUST hear.  Those ugly feelings of uselessness are roaring.  Once I made the decision to get an implant, I wanted it done NOW.  Well, life doesn't work like that.  So as I've been going through the evaluation process again, still without having any answers about it actually happening, I've been losing hope.

I was driving home in a recent snow storm late at night.  I couldn't see a thing.  As I was driving super slow trying to figure out if I was in an actual freeway lane, I was anxiously searching for anything that would guide my driving.  As I stared at the road, I finally began to see an occasional white line, marking the lane division.  Every several feet I would see a line.  I would either know I was still within my lane or I would course correct to go back into my lane.  As I was thinking about this, I realized that my feelings of hopelessness along my implant journey have been due to me not seeing any "white lines."  I felt I was navigating this journey alone with nothing to guide me.  I challenged my thinking (that's a good therapy technique by the way) and began thinking about all the things along the way that have kept me going.  There were actually a lot.  Mostly, the white lines of this journey have been the people in my life.  My co-workers have given me "white lines" by validating me, praying for me, building me up and accomodating me.  My in-laws have given me "white lines" by being mindful of me, still trying to talk to me and praying for me.  My family has given me "white lines" by asking questions, being patient and remaining involved in the journey.  Marie, the rep from Cochlear Americas, has provided "white lines" by researching my insurance and finding a way.  Also, by her constant follow up.  My husband has given me "white lines" by joining me in the journey and making phone calls to follow up.  My children have provided white lines as they tell me often "Mommy, I love you soooooooo much."  As I realized how much people cared about me and how invested people were in my hearing, my feelings of hopelessness left me.  My new thoughts (also a good therapy technique :) became "surely all this combined faith will yield answers from my loving Heavenly Father and I will be taken care of."  Also, I was filled with peace that things would work out.  Maybe, not in the ways I think it will, but still, it will all work out.  I do not feel discouraged anymore.  I know it's going to be okay.

Thursday, November 17, 2011

An update

Well, another evaluation is underway.  But I am no closer to knowing if an implant is in my immediate future.  Still waiting on my insurance to pre-authorize it.  We recently found out that we are changing insurance providers on January 1st and the new provider will not cover any amount of an implant.  So we have until the end of this year to get this done.  No pressure, eh?

Honestly, the evaluation process this time around has been super hard on me.  First, I met the surgeon.  He determined I was a candidate but couldn't tell me anything about the insurance/financial aspect of it.  Second, I had met with the audiologist.  Really like her.  However, they (don't ask who they is because I don't know, someone in the implant world) changed the tests that were required to determine eligibility.  Last October, my test scores on the HINT were 19% and I was shocked.  That's the test in which I wear my hearing aids and listen to sentences from a speaker in the wall.  You have to get below 50% to qualify for an implant.  My score, obviously, qualified me as depressing as it was to score that low.  However, the tests have changed in the last year.  The Audi warned me but I had no way of preparing for what would come through that speaker in the wall.  I don't even know how to describe it.  It was humiliating.  Just sounds like static and mumbles came out.  There was absolutely no sound I could make sense of.  The Audi said "just guess the best you can."  You have to have something to go on to guess.  I just stared at the speaker willing my brain to make sense of the words.  I moved closer to the speaker.  The Audi said that was "cheating" and I couldn't get closer to the speaker.  It was so long.  It lasted soooooo long.  Both ears were tested, just the right and just the left.  Then the Audi said I had to do it again but this time there would be noise in the background and it was a test that got progressively harder, to the point that those with normal hearing can not hear.  I knew I was doomed when it started.  Again, no comprehension.

Well, obviously, I qualified for an implant.  Again.  But this time I felt incompetent.  How can I function like I have been daily and not be able to pick up any sounds in this ridiculous test.  I got a bit insecure and wanted to tell the Audi that I had a Masters degree and that my brain worked, like I had to prove myself.  I kept my mouth shut.  No need to prove myself.  Being prideful isn't going to get me anywhere.  And what were my scores, you wonder?  Less than 1%.  That was hard to swallow.

Then we had to talk about my expectations and my ability to rehabilitate myself.  All of this and I still didn't know if I could get an implant.

I am waiting on the insurance/scheduling coordinator to get back to me about insurance approval.  In the mean time, I am proceeding with the other tests, though it does feel a little bit in vain.  I went and got my shot to immunize me against Meningitis.  I know I am a wimp, but that was incredibly painful.  It still is.  I hope my arm feels normal again one day and that I can move it without wincing in pain.  I am going to choose to blame the nurse on this one.  I really don't think it should have hurt that much.

Also, I did the balance test.  Yeah, that was fun.  I don't even want to talk about that one!  So after each test, I keep hoping to learn that this is still a possibility for me and that it can happen within the next month or so.  Not knowing isn't exactly keeping me positive and encouraged.  Thankfully I have this gi-normous support group that is staying positive and helping me in my moments of discouragement.  There is a woman who works for Cochlear Americas that has been a HUGE adovocate on my behalf.  I am so grateful to her.  So, so grateful.

I'm hoping they can use the MRI from last year so I don't have to undergo that one again.  I will have to meet with the surgeon again but I think I've completed all my part.

While driving home from the balance test and feeling discouraged, I did some soul searching.  Asking myself if I really wanted to become part machine.  If I really wanted to undergo a surgery.  If I really wanted to get an implant.  The answer was obvious.  Yes.  Yes.  This is what I want.  This is what I need and I won't stop fighting for it.  The world is a hearing world and I am NOT giving it up!!

Friday, October 14, 2011

A small ray of hope

It's been a long few months trying to figure out a way to get an implant.  Last month, I went to a hearing health seminar, put on by Cochlear Americas.  Unfortunately, I kind of lost it.  Fortunately, my emotional reaction was noticed by the staff and intervention took place.  Once I could stop crying long enough to actually speak, the staff became super supportive, promising that they would take my insurance issue back to their offices and work on it.  They were hopeful that they could help me navigate the system in such a way that I would be able to eventually get implanted.

Well, several emails and phone calls later, they believe they have found a way.  They are confident, I am not quite there yet.  Tomorrow I call my insurance with this plan to see if they will approve it.  It's a simple matter really.  Just changing surgeons.  And ensuring the surgeon is under contract to agree to the lifetime max of $35,000.

If this plan works.......another evaluation will be underway.  If not.... back to the drawing board.  However, I feel like I have this gigantic team fighting for me and I can't even begin to say how much relief that gives me.  I have felt so alone in this process.  The insurance world is complicated and frustrating.  But with this team besides me, I think good things can happen.

Monday, May 2, 2011

Denied

Well, my insurance company denied my request for funding an implant. They weren't even nice about it. Huge disappointment. I tried to apply for a couple of grants through foundations established to help people afford implants. I was denied through them as well because I have insurance.

I am going to try and do some advocating to help the IHC network recognize the cost benefit of an implant but you know, that's not exactly an easy task. Or quick. In the meantime, with the significance of my loss, I've got to do something to improve my hearing tools. So I am going to try and take an online class designed to help people improve their hearing abilities without technology. It's worth a shot. And it's certainly better than sitting around feeling like a victim of the insurance world!

Tuesday, April 12, 2011

Waiting

Yesterday I asked my daughter what she wanted for my birthday. After her tenth attempt to communicate it to me, she gave up and just responded "a toy." I just got an email from a dear friend who has had a cochlear implant for almost a year. She talked about how wonderful it was to hear the birds returning for Spring and the variety of sounds they make. She also talked about her ability to have a conversation with her grandchildren. She's thrilled. I'm envious! So happy for her of course! But definitely envious. We have sent in an appeal to my insurance company and are waiting for their response. We should know by the end of April. Fingers crossed. Prayers sent :)

Saturday, January 1, 2011

My thoughts on Christmas Vacation

"Blindness separates you from things. Deafness separates you from people." -- Helen Keller