4 Days Post- Op

Well dang! I was just about to complete my post when the power flickered so all was lost. I shall try this once again.

I am still having pain but I guess that is to be expected. I was able to sleep better last night with only waking a few times so that is a good thing. I am hoping to be able to return to work on Tuesday but at this point I am not so sure. I know I can not make it for 10-12 hour days but maybe I can do 8. It's hard to believe I actually have this device in my head. Doctors can actually give sound to deaf people, is that not incredible to think about? After living this for 2 years, I can only say it is a miracle.

My thoughts are now on activation day! This will be the day that sound enters my world again. I can not begin to express how thrilled I am at that thought but there is also a bit of me that is worried, even scared. There are NO guarantees! I have to keep that thought in my head and not be too hopeful. This is so hard. We are told to keep our expectations low but our hopes high. Just how do you do that?

Hearing Journey is a support group I am part of. I would have never made it this far without them. Since the recall ended there have been many, many surgeries and activations take place. The results have been remarkable. I want so much to be part of that "successful" group but what if I am not? There is no way to know until activation. It is going to be a long month with this weighing heavily on my mind. 26 days to go...

2 Days Post-Op

Getting better everyday. :)
The (un)pressure bandage came off today. As you can see in the photo I posted yesterday, it was not tight. I am not complaining at all because this is often an issue with many. I am now able to take Advil for the pain and that is helping lots. I am able to shower today and wash my hair but I am going to wait a bit. I am a little nervous about handling that ear. There seems to be little swelling and little jaw pain. Bonnie says the incision is red so she is keeping an eye on that and I am praying for no infection!

Here is a picture of the bandage close up. I was surprised to see the smileys! LOL

Surgery Day

It is all over and what a day it was!

My first disappointment was when I arrived at the hospital at 5am. I was told that my surgery would be at 9:30 not 7:30. I was not nervous at all and if I could have gone at 7:30 I don't think I would have. But around 8:30 it was getting the best of me. I asked if I could have something to calm me down and was told yes but that didn't happen until they were wheeling me in for surgery. The next thing I remember is the anesthesiologist (however that is spelled) waved goodbye to me. Nap time! I was in for a rough start when I woke up. I have mentioned tinnitus before. I have seen many refer to "freight train" tinnitus before and I thought I knew what that was. Holy cow! There are no words to describe how bad this is. The nurse gave me something for that and also something for pain. I looked over and saw what she gave me and wanted to cry. The only time I know of taking this, I threw up all night. NOT GOOD! I tell the nurse and she gives me something for that. Nausea was bad but I managed not to throw up so I am thankful for that. I have had no dizziness, vertigo or balance issues at all.

Now we have the pain. This is an area that really upsets me. I NEVER get what I need because doctors do not listen to patients when it comes to pain meds. On my first visit with my surgeon, I had the conversation with him about the problems I have with pain meds. He asked what worked for me and I told him. He said he would write that so I was happy. So on my pre-op visit last week I brought in an old RX (over a year old) to show him because the mg. makes a difference. Mine were stronger than he was going to write so he told me just to take what I have. I questioned this because they were expired not to mention I only had 6 pills. He said it would be fine. Ok.... NOT!

I took one after leaving the hospital for the 2 hour ride home. It did nothing. Once we got home, my sister-in-law got on the phone. She was told to have me take 2 of what was not working. LOL I sometimes wish doctors had to deal with this end of things. I bet 99% would have a different attitude. I do understand their need to "control" pain meds but you would think my having an old RX with pills left would tell him I will not abuse them.I actually thought this doctor would listen to me but I guess he falls into that category with the rest.

I am better this morning. I ended up taking someone elses RX. Not something I wanted to do but I needed rest. I got some rest and the pain is better albeit 3am. LOL I am going to see if I can make it today without pain meds.

Merry Christmas

48 hours from now I will be in surgery. Wow! This REALLY is going to happen! I am not nervous about the surgery, just as I thought. I am however becoming more and more anxious. Not about the surgery but instead about the outcome once it is activated. I am rested now, having a few days off. Not working gives me lots of time to think.. not always a good thing! LOL

There was a sign I saw on facebook a week or so ago that I also posted there. This is what it said..
Dear Past: Thank you for your lessons
Dear Future: I'm ready
Dear God: Thank you for another chance
This really hit home with me. I hope to take this chance and run with it.

I must have been good this year! Christmas was very nice and I was so surprised at all the acts of kindness. I bought myself a Kindle. I have never owned any of the electronic gadgets but this purchase is to help me with rehab. I absolutely love this little thing! Confusing at first but once I got it all straight, it is something I should have already had. Who knew? I do read a lot and this will sure be nice compared to having a book in tow. It will also read to me which is where rehab comes in. I can follow along with text to try to understand what I am hearing. I also got a gift card, basket of baked goodies, a candle and some PJ's.

As you can see, I am rambling! Jumping from one thing to another, I probably shouldn't be posting. I decided to go ahead so years from now I can look back and see where I was. Anxious, anxious! I think that best describes what I am feeling. Tomorrow I will see that everything is done before surgery. Cleaning, laundry etc. I had the arm from my glasses removed so I can see after surgery. I have my neck pillow, dry/erase board and comfy clothes all together. I have stocked up on soups, yogurts etc. I can't think of anything else I need to do but I am sure there is something!

We are not getting a room in Tampa so Tuesday morning I will be leaving the house at 3am, at the hospital by 5:15 and surgery at 7:30. I am glad it will be an early day. By lunchtime we should be heading for home. :-)

Pre-Op Is Done

My day started at 3:30am this morning. Tampa is 2 hours from here with NO traffic and you just never know about I-4. Morning appointments I leave 3 hours early and usually make it with a few minutes to spare. I hate being late. I also don't like to throw on clothes and out the door...

I left here at 5am for a 8am appointment. Being that early I didn't hit much traffic (*note to self*) so arrived in time to have breakfast first. Glad I did! I don't know if any of you have been to Tampa General or not but it is like a city in itself. There is even a Starbucks there. When I am done with the doctor, nurses and paperwork, I am off to the hospital to get pre-admitted. These ladies I dealt with at the hospital were amazing! Not one of them cared that I could not understand a word they said, they just waved it off and said "we will make it work". And we did! My only real fear in all of this is waking up from surgery with everyone wearing masks and me not knowing what anyone is saying. I was assured this will not happen. I can't wait to see how this works out. I do have a dry/erase board I will be taking with me just in case.

Finished up there and everything completed now. I stopped on the way home and I have all the meds. I need. I also stopped and got the arm removed from my glasses so I will be able to see after surgery. I think everything is covered now and six days to go.

Surgery will be at 7:30 Tuesday morning and I have to be there at 5:15. I am still debating on getting a room or leaving from home at 3am....

11 Days Until Surgery!!.... almost 10 now :-)

I only have 3 more days to work! I will be so glad when those days are done because work has been really stressful. I got an email today from the surgery coordinator saying my pre-op has been rescheduled. I will go Wednesday at 8am and since it is in Tampa, I will have to take that day off work and leave home at 5am. LOL Wednesday will be the perfect day to do this though. I can make it through two days then get a break and only have one more day to do. I will make it! The good thing too is we are off work the week of my surgery so I may not miss any work if I do well with surgery. I just have to wait and see. I am so looking forward to having this done that I don't think I will get nervous at all about surgery. My surgeon is one of the best in the country so I know I am in good hands there.

My nerves will come into play when it is time for activation. That is the moment of truth. Will I hit the jackpot as so many have that I know? Or will it be a ways down the road before I can make sense of what I am hearing? There is no way to predict the outcome. Everyone is different. I am willing to work however hard I have to to make this work for me but will that be enough? We shall find out the end of January.

I got the sweetest gift in the mail last week. A total surprise. There is a lady that is local (Orlando) that I have been talking to online. She is a month ahead of me in getting a CI and she will be activated next week. We have talked a bit and she offered to send me a few things I would need for surgery since she is seeing the same surgeon I am. This consisted of pre surgery body wash, RX ointment for the wound and nausea pills in case I need them. That in itself was very sweet of her. Low and behold when the package arrived there was more. She also included a beautiful Christmas card, a dry/erase board to take to the hospital and the most comfy PJ's you have ever worn! This package brought tears to my eyes. Once I am activated, we are going to have to meet for lunch sometime to see if we can hear each other. This will be great fun!

Quick Update

I got another email from my audie yesterday. She said they have not been trained yet to program the Neptune so she is not able to order it. But... she will order the BTE for me and when the Neptune is available, I will be able to upgrade! It may happen by the time I am activated which is Jan. 26th but she can not say for sure. Doesn't matter to me when, at least I know I can have it! I am still excited!

Neptune!

Neptune... this is the name of the sound processor I will be getting. I am very excited about it for many reasons. This processor is not a BTE (behind the ear) processor. It is what is called a BWP (body worn processor). I really think this will be the best option for me because I was never comfortable with my old hearing aids. I wore them of course so I could hear but it was not comfortable. It is not a vanity thing at all. I would strap bullhorns on my head if it meant I could hear! LOL

Technology has come a long way. This processor is the size of a tube of lipstick! There will be lots of options as to where I can wear it. This is powered by one AAA battery. You can use disposable or rechargeable batteries. This is a great option! There will be no worry of "do I have the charger with me?" I will always be able to hear. Another great feature this baby has is it is water PROOF! I can go swimming and still be able to hear! This is the only processor that offers that.

This processor was just approved by the FDA last week. Maybe this is the reason my journey has taken so long. I do believe things happen for a reason so maybe this is it. I wasn't sure if I would be able to get this one but my audie says I can. I am happy! 21 days to go.....

Counting The Days Once Again

I can actually start counting the days until surgery. Wow! This has been a VERY long journey and I am so glad to finally know it is going to happen. I am putting in a lot of over time at work or this would probably be more but exhaustion is coming into play here. Along with that the tinnitus is roaring away. At times the "commentators" in my head are trying to get louder than the roar, it is quite a battle. I worry it will get worse after surgery. I'm not sure I will deal well with that. I hope I can handle it. 28 days to go...

It's Starting To Sink In

Wow.. it IS actually going to happen! I have a date. I am one month away from surgery and 2 months away from activation. I think now is a time to explain a bit on how this all works.

First of all, everyone is different so there are no guarantees. The right way to go into this is with expectations low but hopes high. I think I have that covered. The way I see it is, I will have sound. It may not be perfect but then again it might. Anything I gain will be a plus!

Next step is surgery. There are plenty of complications that could happen just like with any surgery but I see that as a way to the prize. If by chance things don't go as planned, I am confident that I will still be happy with my decision to do this. The surgery itself takes about 2 hours normally. I posted a video of the surgery in one of my first posts if anyone cares to see it. It is an out-patient surgery that does not usually require a stay at a hospital. Most people do well with this surgery with only minimal discomfort.

Recovery time does vary from person to person. There will be about a 2" incision behind my ear. I will wear a tight bandage for the first 2 days and am told that is when things get better. Once the bandage is off, I can shower, wash my hair (with caution) and start to feel human again. LOL Once the surgery is done and implant in place, we have to wait for it to heal and swelling to go down before activation.

Activation time varies from surgeon to surgeon. My surgeon says 4 weeks. Some people have been activated in as little as a week but that is not the norm.... yet. I don't have my schedule yet so I don't have an exact date for activation but this will be the day I hear my first sounds. Then the work begins.

There is no way to tell what I will hear come activation day. I could start off hearing well and understanding some things but I may only hear "beeps" when there is noise. This is not necessarily a bad thing. It just means I have to work harder. Having a cochlear implant is a whole new way of hearing. My brain may not be able to recognize that. I will have to teach my brain what it is hearing. In time, things will become better, little by little.

I'm not sure which path my journey will take me. I have survived the past two years so I know I can handle whichever way this goes. Anything will be better than the silence I now live in. We shall find out in two months!

YES!!

I have a surgery date!!!! December 27th! I am so ready! :-)

Maybe Not?

I don't understand why this has to be so difficult! All it takes is one fax. My counselor said she would do it Monday. I emailed her Tuesday morning to see if it was done and she replies "I plan to do it today!" Still nothing. I don't understand why she keeps lying to me. If it is going to be 6 months from now say so. Don't tell me everyday for the next 6 months it will be tomorrow!

Maybe?

Well, here it is weeks after meeting my surgeon and I still do not have a surgery date. Hopefully this will change next week... hopefully. I made the drive to my counselors office today. Another unscheduled visit. She was there and I got into see her right away. It took her a bit to find my file. We then discussed that nothing had been done (whatever that means) and she said she would contact the CI center to see what they needed. I was doubtful when I left there but late today I got an email from her. She said that she had just got off the phone with them and has the codes they need. She will have it processed on Monday and fax it to them. I had also emailed the CI center when I got home with my counselors name and phone number so maybe it was them that called. Doesn't matter really, I covered both bases and it got done. I will not wait until Wednesday as she suggested in her email. Tuesday morning I will be emailing the CI center to see if they got it. Wish me luck! I sure need all I can get!

BOO!

The emotional roller coaster I am on sucks! I'm trying hard to be nice here but I can't think of a nicer word that actually describes it. The past couple of days I have been encouraged and really feeling good for a change. I try hard to take care of things myself. It's really hard to do when your only means of communication is email and the receiver doesn't respond.

I was a bit disappointed at the results of my appointment with my surgeon last week. I had hoped to get a surgery date. That was not to be but I still kept trying to get things done. This MRI is suppose to be the only thing standing in my way. It is scheduled for Friday morning. I have to travel 100 miles one way each time so I was trying to get to see the scheduler (for surgery) while I was there.

I went to their website so I could email them. I am really thankful that they will communicate with me this way. Of course you have to register first. In order to register you have to be able to use a phone. LOL So on to plan "B".... or is it "W" OR "X" by now? I emailed a person that has the same doctor and lo and behold, she gave me the scheduler's email address! I immediately emailed her so I was hoping today she would have answered and even possibly set something up by email. She did respond but this is what she had to say...

"WE will need to obtain authorization from Vocational Rehab first. I am also trying to work with AB to see how we can get a device for you if they do not deal with your insurance. This is all going to take some time!  I will keep you up to date and you are more than welcome to check in with me."

Hmm.. the only "!" in the whole email is with this sentence, "This is all going to take some time!". How depressing! It just never ends.....

Good News.... Bad News

I will start off with the bad and get it over with. I did NOT get a surgery date on the 26th. Very disappointed about that. The good news is I am thrilled with my new CI team! They are all wonderful. First I went in to see Dr. Bartles. I had a very hard time understanding him as he tends to talk fast. He is prepared for us deaf folks and captioned what he said on his computer so I could read what he was saying. I love this man!

He looked over all my tests and said that they sent him the report of my CAT scan but no pictures. He wants pictures but prefers a MRI. Also there was no record of a HINT test (hearing in noise test) and although I have gotten approval, this test is required. He knew we had driven a long way to come in and tried to get both test done that day but it was just not meant to be.

I did get the HINT test taken care of and this was a surprise for me. I didn't expect to hear anything but I did!! That means I still have things working in there which is a great sign... to me anyway. My audiologist was wonderful. I absolutely love her too. We spent lots of time talking about all the different implants and which one I had chose. Then she explained how often I would be coming to see her.

I am scheduled for the MRI next Friday and I have emailed the surgery scheduler to see if it is possible to see her on Friday as well after my MRI. I am not sure yet if I will be able to see her but I hope to be able to and actually have a surgery date next Friday! More updates to come...

Getting Closer!

I did go to the BEA meeting and I am so glad I did! I got to meet several people that I have talked to online that either have a CI or are waiting for one like I am. I think I was the only one there that is completely deaf though. It was an outing I really needed.

The day before the meeting, I got together with a friend and went to the beach. Yes. I. Did. It was a beautiful day, overcast, mid 80's and a nice breeze. Perfect! My tinnitus was rather loud than day so I put my mind to work and pretended the roar of tinnitus was actually the sound of the waves! Yea, I have a pretty good imagination. LOL

Three more days! Oops... make that four. I tend to rush things sometime but it is Wednesday that I go meet my surgeon! In four more days it will all become a reality. I will have a surgery date!

One Week And A Half Before I Meet My Surgeon!

The following is a post I made in a group I am in and I feel it is worth repeating...

 "This has been a very tough battle for me the past couple of years. I would never have made it this far without my family and friends. This has all but taken my life from me and I so much want it back! I am getting closer and I can't begin to express how excited I am! Thanks to all of you for being here for me."

Tomorrow I am heading to Orlando for the BEA meeting. This should be an exciting meeting since it is the first one since the recall was lifted AND we have new technology coming out soon. There should be lots of good info as well as meeting several others I have talked to online that are in the same situation. I am nervous of course because I still don't deal well being around people but I know they ALL understand. Keep telling yourself that Cris...

Counting The Days

I just want a date.... a surgery date that is. :-)
Tomorrow is October first, finally the month I will/should get that date. I am hoping to be activated by Christmas. Now wouldn't THAT just be the best Christmas ever? As I said hoping but not expecting. Surely I will at least have surgery by then. I do know people that are seeing the same surgeon and their wait is not that long but who knows by the time I go what it will be. There are others I know that have to wait 3 months before their surgery. Waiting has not been easy but I should be a pro at this by now! (the waiting that is)

As we say in the CI world, keep expectations low but hopes high. There are no guarantees. It is amazing to me that today's technology can make a deaf person hear. Who would have ever thought this could be possible? At this point, being completely deaf, if I hear anything at all come activation day it will be nothing short of a miracle. Chances are that I will do well but I am trying hard not to think that way. I want to do well of course but I don't want to expect it and be disappointed.

Looking Forward To An Informative Month Ahead

I am so nervous! This implant is ALL I can think about. I am just going through the motions of every day waiting until it is my turn. As I said in a previous post, I meet the surgeon October 26th. That is a month away. Ten days before then, I am going to a BEA meeting which should be full of great information. Since the recall ended last month, by this time they will know how things are going as far as getting the implants needed at this time. Lots of people have been waiting and surgeries are happening now but I'm not sure if supply has met demand yet. There is also a new processor coming out that I will be eligible for!! I am really excited about this one and can't wait to find out all about it. It is called the Neptune and is water PROOF! Yes, you can go swimming with this baby! YEA! This processor is not warn behind the ear (like a hearing aid) but is a body warn processor. It is so small that it can be clipped to swimming goggles!

I will get two processors with my implant. One is for back up. This to me is excellent as there is nothing like getting my hearing back only to lose it if something should break. Up until now, most people got two behind the ear processors. I think having one of each will be the best of both worlds. For one thing, I'm not sure I will like the behind the ear. My hearing aids were never comfortable but something I had no choice over. At least with the implant, there are no ear molds! That was the most uncomfortable. I do however want the BTE because of my hopes to use a phone again. This processor has what is called a T-Mic which fits right in the ear canal so I can use a phone just like you hearing people! I have not used a phone in so many years now that I'm not sure I will get back in the habit of that but it will be nice to be able to if the need arrives. Also to stay connected with my family. There is also a "holder" for the BTE that has a clip so you could wear it elsewhere. I am going for that option too. This is mostly used by children but hey, I just a big kid. :-)

I have only heard of one adult that preferred the body warn processor but I really think I might just fall in this category. He says he would rather others not know he is HOH/deaf so he clips it to his belt and it looks like another phone/pager etc. Most don't like it because of the wire. That will definitely be something to get use to (and keep my cat from attacking) but I think it might be easier to get use to than a BTE. So many decisions to make! There are also two types of batteries, a slim cell and a power cell. The slim is smaller/lighter but doesn't give as many hours as a power cell. I don't know if I can handle the weight of a power cell but would love the added time. We get four so I'm going for two of each. I will only open one of each and try them out and the unopened one can be exchanged if I need to. I also have colors to choose. I will bet when I go to the surgeon there will be something else to decide on that I have given no thought to. I sure hope I make all the right decisions because there is no re-do. I have my list of questions for the surgeon that I am adding to all the time. Maybe in my next post I'll get the scanner out and should you some of the choices I have.

I Am Finally Going To Meet My Surgeon :D

It has taken almost a month to get this appointment. I swear it takes an act of congress to get an appointment! It has been a huge run around between emails and getting nowhere fast. I am off work today so I went by my sister-in-law's and got her to make the call for me. I mean come on, how hard is it to make an appointment? Everything is approved and all I need is to see the surgeon and set up a surgery date. It took a few calls to actually get a person but we succeeded! I go meet my surgeon on October 26th and I hope on that day to say, "I have a surgery date".

I am so excited and so nervous as well! I have so many emotions going through me right now it is hard to describe!

It's Been A Tough Week

A couple of weeks actually. Since my approval, things are at a stand still again. My counselor always says she will get right on it but nothing happens. I tried to "help" things along by emailing the surgeon myself. I told them I was approved and waiting for AB but would like to get on the waiting list ASAP, could they call my counselor to confirm my approval.

My response to this (within an hour) was to forward my email to someone at VR. *sigh* I got a response from them the next day only saying they could not get involved. I don't understand why the surgeon's office could not make a phone call. I would be on the list and probably have an appointment with the surgeon. Even though the recall has not ended as of yet, it is coming in the next few weeks. I would like to have all of this done by that time but it doesn't look like it is going to happen. :-(

I Have Changed Surgeons

I have been fortunate enough to meet some wonderful people at Hearing Journey! I have talked to several of them via email and gotten some wonderful advice! A BIG thank you to you all... you know who you are.

I was "assigned" a surgeon that is closest to me but NOT very experienced. The worry started. My emotions have been all out of whack the past week anyway. *sigh* I emailed my counselor to ask if I had a choice of surgeons and was very happy to learn I did! YEA!! There are several people at HJ that are in the same area I am so I have gotten good recommendations from them. I have decided to have my surgery in Tampa. It is a drive from here but I don't think that compares to a good surgeon. I will go back to Tampa for the initial activation but then I will find a local audiologist for adjustments (mappings).

There are a few centers scheduling surgeries now for September and October so I think they know this recall is coming to an end. I don't know how long the waiting list will be in Tampa but I hope to be added soon. I am not waiting for my counselor to notify them, I have already done so. I was surprised to get a response from my email within an hour saying they would contact VR. I am hopeful I will have a surgery date soon even though it may be closer to the end of the year. It's getting closer... I'd like a date!

Have I Reached The Top Of My Climb?

Here it's been another 2 months since I have posted...

The past 2 months have been difficult to say the least. My counselor has given me the run around since the beginning and that hasn't changed. Monday she sent me 2 emails. I opened the first to find out that my CI has finally been approved by Tallahassee!! Whoooo Hooooo I am in shock. I quickly email her thanking her for letting me know and how relieved I am. Then I open the second email. This one says "sorry my mistake, it was approved by the medical consultant and now goes to Tallahassee". What a let down! She did however email it to Tallahassee instead of snail mail and today.... yes today I got an email from her saying "This is REAL! It's been approved!"

Now I'm almost scared to believe this until I see it in writing. LOL My wait is not over however. I still have to wait for this recall to be settled with the FDA and then have to wait my turn on the waiting list. I have emailed my audie and told her I have been approved and asked her to get me on that waiting list. I am hoping she will tell me how long this list is but don't know.

There are so many emotions going through me now it's hard to describe! I have so many hopes that this will give me my life back but then I wonder if it is possible. For over a year now I have been slipping further and further into isolation. It's not where I want to be but it is easier to deal with. Can I actually pull myself out of this pit? For now, I'm going to try to think of the positives and pray this will work for me!

Update..

Well, it's been awhile since I have posted. Geeze, almost 2 months!

I had my last appointment which was for a psychological evaluation! LOL I haven't seen anyone carrying a white coat for me yet so maybe I'm safe. This was a very strange appointment though. Everyone from the Hearing Journey had told me it was not a big deal. They just want to make sure you don't think the surgery is an instant "fix". I went into this appointment thinking, "no big deal, I KNOW what to expect and have even watched the surgery". So I go in and am handed a book to fill out. I was asked to describe my childhood and the whole bit! Well, I left that blank thinking this didn't pertain to me. LMAO I filled in most of the rest and waited. Once I was called back, I go into an office with a guy that has a face FULL of hair! Have you ever tried to lipread someone with a face full of hair? Have you even ever tried to lipread? LOL So he says "something" and I just look at him dumbfounded. I had no clue. I tell him I am deaf so he holds up a finger and shuffles through some papers. Comes out with a letter from my counselor that says I am hard of hearing but do well face to face. LMAO My counselor THINKS I do well because I have no problems lipreading her! He starts looking through the book I filled out and I mention to him that I didn't fill in my childhood because I didn't think he needed that. So he says tell me about it then. OMG! I was there for 3 HOURS! He gave me another book that had about 500 statements in it and I had to say if they were true or false pertaining to me. Very long day!

My counselor says she has sent off the paperwork. She says it will be about 2 weeks before she gets an answer yes or no if I am approved. I say "she says" because it took me 5 months for her to set up this last appointment that she said she would do ASAP. LOL The US is still waiting for FDA approval so AB can get back to business. AB is back over seas and even in Canada now so it should be any time now. No one knows for sure. Can't predict the FDA.

Tinnitus

Did I spell that right? LOL
This is something I have not spoken about to anyone. I'm not even sure why. When it started, I didn't know this is what it was. Now I do. It started about the time my last hearing aid failed me and there was nothing else they could do. I remember going to see my audiologist trying to get some clarity out of my hearing aid. I had only one as my other ear died on me the year before.  Sitting in her quiet office, I kept hearing a roar. I asked about a noisy A/C unit or something else making a roar and she said the air was on and she could hear it. But to me this was really loud. It was so loud that if I were able to hear her talking it would have been drowned out by the roar. I questioned it no more but then it stayed once I left.

I never know when it will decide to come visit or even what type of noise I will hear in my head. I have not yet had voices in my head telling me to do strange things though. LOL Lots of times it's a roar which is very annoying. Sometimes louder than others. I have had a few nights where it would not let me sleep. Not fun! Sometimes it is a piercing "tone" for lack of a better word.

I sometimes too have what I think to be "phantom sounds". This mainly happens while watching television. There is no sound because I live alone and don't know how loud it would be for one thing. It's not necessary and I use closed caption. So I know what is being said and sometimes it "sounds" like I am hearing their voices. Seriously! Don't get out the white jackets and I have no idea if what I "think" I am hearing is really how it sounds.

From everything I've read everyone is different so there are no guarantees. With a lot of people tinnitus goes away while wearing the CI. I am hopeful this is the case for me.

Is It Finally Going To Happen?

I think I am getting a little closer. I am afraid to think it might actually happen soon because I have thought that many times only to be shot down. However, I did go see my counselor yesterday. It was not a scheduled visit but I happened to be in the same town she is in so I dropped by. I got lucky and caught her there after only an hour and a half wait! It was so worth it. I did get that appointment I have been waiting on for the past 4 months and it will be May 17th. I will be there with bells on! We had a very serious and long heart to heart yesterday and I think she realizes where I am at. This needs to be done soon!

I also have been in contact with my audiologist. She tells me that the cat scan I already have done is ok with the doctor so I don't have to have another! Great news there as I won't have to wait for my counselor to schedule this one! She also tells me that they expect AB to end the recall mid to late July. Of course there is now a waiting list for implants so again I'll have to wait my turn but I do see the light at the end of the tunnel!

My counselor told me yesterday that after this psych evaluation that I will have everything I need. She will send all the reports to Orlando and they will check to make sure everything is in order and send it to Tallahassee. Tallahassee says yes or no. She will get an answer via email in about 2 weeks after sending it to Orlando. So, if I can get her to send in the reports, it looks like I will be approved around the time AB is back in business!

This has been quite a journey so far and really it has not even begun yet. This is not an instant fix and will take lots of work to make it happen. I am so ready to exit this silent world and enter the one with sound again. I know we all have things we have to deal with but this is by far the hardest I have ever had to. I have so much compassion and admiration for people dealing with things that are much tougher than this is.

Still Waiting...

Here is it the end of March and I am no further along than I was the last time I was here. :-(

I'll share with you a little of what I have been dealing with. LOL This is the last email I sent my counselor...

I don't understand what you are doing. On Dec. 8th you said...

 

I have gotten the records from Dr. Atkins, and yes, I am aware of the situation with AB.  I need to send you to a psychologist for a brief eval…….(state requirement).  I will get that scheduled ASAP.

 

I have asked you about this several times. On Jan. 26th you said...

 

Hi Cris…..I’ll check with Dr. Atkins to see what else we need.

 

My other attempts have gotten no response from you. Why have I not gotten an appointment yet? First you say you have the records from Dr. Adkins and then you say you will check with him? I don't understand why you can not set up an appointment in 2 1/2 months. Please explain this to me. I will be waiting to hear from you. 

As you can tell... I am tired of not getting any answers from her. It's the same over and over. I did get a response to this one however.... several days later but a response none the less! Here is what she had to say... 

Hello Cris

I apologize for not scheduling in a more timely manner.  You have every right to be frustrated.  I will schedule your appt. with psychologist, and I also need to schedule a CT of the head……I will need to get a prescription from Dr. Adkins office. 

Hmmm... every right to be frustrated? She has no idea! I have been trying to get this done since last June! I really thought this would be done by now. Maybe next year? We shall see IF this appointment gets made...