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...

Recall!!

Things just get better and better! LOL
Advanced Bionics has voluntarily put out a recall on their implants. Scary thought huh? Once you think of all the aspects of this... not so much. Their last recall was in 2004 but no one was affected that already had the surgery. I will post their announcement for this one here...

**** Recall Notification****

Advanced Bionics HiRes 90K Cochlear Implant

Dear Cochlear Implant Recipient or Parent,

Our mission at Advanced Bionics is to improve the lives of the hearing impaired, and the

safety and well-being of our recipients is our first priority. Because we are committed to

ensuring that our products are as safe as possible, we are voluntarily informing you that

we have become aware of an issue with the HiRes 90K cochlear implant. The issue can

result in pain, overly loud sounds, and/or sudden shock sensation in the implanted ear

while the implant is receiving power. Thus far, our investigation shows that of the more

than 28,000 implanted HiRes 90K devices, only two explanted devices have been

confirmed to have this issue. There are 9 other patients with similar symptoms which

our investigations have not yet ruled out as related to this issue. For the two confirmed

cases, there were no symptoms upon initial activation of device. However, the patients

experienced symptoms after 8-10 days of use. Both recipients were re-implanted with

HiRes 90K devices and their clinicians report that they are progressing well.

We are conducting an extensive investigation of this issue using an independent

scientific research organization. Their current analysis suggests that, if present, the

issue will first occur within 90 days of device use. However, the onset of symptoms may

be delayed after initial activation, and they may continue to occur intermittently. In the

unlikely event that this symptom occurs, continued device use may lead to damage to

the inner ear and/or the auditory nerve. If you or your child experience pain related to

implant use, remove the external equipment immediately and contact your cochlear

implant clinician to schedule an appointment. If the evaluation of your device identifies

this problem, device replacement is advised.

It is important to note that it is not unusual for cochlear implant recipients to experience

overly loud sounds. Most of these cases can be resolved with standard troubleshooting,

such as the replacement of external equipment. The vast majority of these cases are

not signs of the issue described above and do not require explant of the device. We will

notify you again as more information from our investigation becomes available.

We sincerely regret any concern this notification may cause. Advanced Bionics assures

you that we will correct this issue and continue to improve our product reliability.

If you have any questions regarding this letter, please contact an Advanced Bionics

representative at 877-577-4628 (telephone) Monday – Friday 5:00 a.m. – 7:00 p.m. PST

or www.advancedbionics.com (live chat) Monday – Friday 5:00 a.m. – 7:00 p.m. PST.

In order to assure the effectiveness of this communication, please complete the

enclosed acknowledgment form and return it to us at your earliest convenience by using

one of the following options:

E-mail: confirm@advancedbionics.com

Fax: 661-362-7621

Mail: Self-Addressed stamped envelope

I am impressed with this company. They CARE about the people using their product. All surgeries since this recall have been canceled until they find the source of this problem. It was only 2 people out of 28,000. I'm not sure the other companies would do this. I love the fact they keep us informed.

I wanted to have this done ASAP even though the process is long and it's possible they will be producing implants before I am approved. This is just one more "bump in the road" and I am hopeful they will find the cause soon.

BEA Meeting

Tomorrow afternoon there is a BEA (Bionic Ear Association) meeting in Orlando. I WILL be there. I am stressing the "will" because it is something I just have to make myself do. I never thought something so simple would be so hard!

My new found friends at HJ (Hearing Journey) have helped to make it a bit easier. They are the only people that really understand how I feel because they have been or are in my shoes. The isolation that takes over your life when you lose your hearing is crippling. It is so hard to explain to hearing people because they can never get the real effects it has on you. I am no longer the person I use to be and I do not like the new "me" but there is nothing I can do to change that but hope. My life is in the hands of others that are not real concerned about it.

The Wait Gets A Little Longer

I got a letter Friday from my counselor at Vocational Rehab. She has made me another appointment with the audiologist for more testing. When I was at the audiologist last month, she told me she had all she needed. So I emailed her to ask if I needed to see her on the 19th of Nov. She says she talked to my counselor but they require more testing. She told me not to worry it wouldn't take long because she already knows the results but it's another hoop I have to jump through. I think I have a long wait ahead of me. We shall see..

The Waiting Game

This will probably be the hardest of all for me. I wish I had more patience but I'm not asking for that. If I asked for patience, God would TRY my patience to give me more and I certainly don't need that! There are many "waits" in this process. The wait for approval, then the wait for a surgery date. The wait for the surgery and then the wait for activation. Activation is the day the journey begins.

That is the day we start to get answers. Some people start hearing right away (although not normal hearing) while others it takes time to retrain the brain to hearing sounds. It is something that you have to work at and I plan to do all I can to make the most of this device. I wonder how long my wait will be...