GROWING UP HARD OF HEARING IN A HEARING WORLD: June 2012

Tuesday, June 26, 2012

X- Ray's

Today, I had to get some X rays done of my spine, legs and neck. I was nervous to step foot into the X-Ray room with my processor on. I am aware that I can have x rays done just not MRI's.

The first thing I did was tell the technician I was deaf and without my implant I cannot hear. I also told her I cannot have MRI's. She even knew what a cochlear Implant was and new that I couldn't have MRI's. I was surprised.

For the first x-ray she told me to take off the processor. Then for the rest of the x rays I left my put processor on. This was nice to communicate with such ease when she was around the bend by the computer. I even hear the machine talking slowly saying " Breath in" " Breath out". I even heard a new sound today while she was moving the monitor I heard a beeping sound. Totally awesome. I will probably brag forever once again being able to hear saved my life because its one LESS thing I have to worry about.

Then I had to get more blood work done today. I heard this new sound. I cant explain it but when the technician put the needle in my arm and put the tube in. Thats what i heard the Tube making a clicking noise. Last Friday when I had blood work done I didnt hear that!

On top of a very very busy month with Dr.'s the best thing hearing is a little princess saying
"Aunt D I love you with all my heart" or " Aunt D I love you so much" as she squeezes my leg so tight.

Priceless!

Visit to my surgeons office

Yesterday I went into the city because I had an appointment with my surgeon. Remember the pain I was experiencing on my implant side as well as the other side of my head? I now have whats called TMJ syndrome. He also asked if I have trouble swallowing at night. Dr. A looked at my ear and asked if I had pain on the other side of my head too. The reason why I cannot sleep on my implant side is because of the TMJ. TMJ is flaring up. I have heard of TMJ years ago but I didn't know much about it until now.

Then Dr A. put his fingers in my mouth and it HURT! He saids that I have to go to the dentist and get a " Night Guard". This is something I am not going to want to do. The night guard will help with the pain. He also thinks that I grind my teeth. I honestly dont know if I do. To have some pain relief I have to take Advil every four hours.

I thought I was loosing my mind the last two months. My jaw has been hurting me as well. I didn't think anything of it because I have to many health issues. So its official I am not loosing my mind. Not yet at least.

He prescribed me some ear drops called Prednisolone because I told him my ears are so itchy. I also asked him about Genetic testing because I really want to find out why I was born hearing impaired. This is something I always wanted to do. I just didn't think that was possible.
My surgeon doesn't do genetic testing so he refereed me to someone I called today and the earliest appointment is August 15th. I'm looking forward to this because I want to know the " Real Story".

I hope everyone is having a good summer so far.

Friday, June 22, 2012

Summer Time & Travel Information

The last few weeks have been crazy because I am taking a summer class. The first day of summer was Wednesday and it was super hot 100 degrees here in New York.

Yesterday I went into the pool with my niece because it was another hot day. Hearing in the pool is amazing. I can understand what everyone is talking about. I am no longer isolated and confused. I even hear the music blasting.

I experienced something really cool yesterday. Someone jumped into the pool and I heard a big SPLASH!!! Also when you go onto a float the float makes a noise as well. Splashing someone makes a noise too. I DID NOT* go under water with my N5 processor on. I am a bit nervous about that. All I did was dunk my entire body up to my shoulders. My niece splashed me once and I was able to swim around with no problem at all! You can even hear a noise when you kick in the water.

Totally awesome!!!!!!

Below is an article I wanted to share with you all.

Beatin' the Summer Heat - Nucleus 5 & Nucleus Freedom IP Water Rating

Beatin' the Summer Heat - Nucleus® 5 & Nucleus Freedom™ IP Water Rating
As summer brings water activities, humidity and sweating, you or your child can enjoy the benefits of hearing while participating in summer activities with your Cochlear Nucleus® 5 or Nucleus Freedom™ Sound Processor.

Nucleus 5
The Nucleus 5 Sound Processor is a behind-the-ear sound processor certified to be IP57 water resistant* when using rechargeable batteries. This means that the sound processor is not only splash resistant, it can also be submerged into three feet of still water for up to 30 minutes.

When using disposable batteries, the Nucleus 5 Sound Processor is certified to be IP44 splash resistant.

Nucleus Freedom
The Nucleus Freedom Sound Processor is certified to be IP44 splash resistant.** This means that recipients can enjoy playing in sprinklers and engaging in sports.

When Hearing Aids are No Longer Enough Webinar
Are hearing aids no longer working well enough for you? Please join the next webinar, "Because Life is Worth Hearing - Solutions for Hearing Loss" on Tuesday, June 26 at 11 AM. Register Today!

Here are some travel tips:

Carry your patient ID card with you at all times.Download a printable PDF

Cochlear implant recipients can go through the airport security metal detectors because they usually will NOT react to the metal in your Nucleus® Sound Processor. You can also walk through whole body scanners.

Bring your own headphones or use a Mains Isolation Cable to listen to music or movies during a flight.

Bring spare sound processors with you if you have them.

Always pack your spare sound processors inside a carry-on bag. Never place your sound processor directly onto the conveyer belt.

You can leave your sound processor on during takeoff and landing.

Read the TSA guidelines for traveling as a cochlear implant recipient.

Have a safe and fun Summer!!!!!

Saturday, June 9, 2012

Audiological 3 month post re-implantation Evaluation

Today I received my results from the evaluation.

History: In February 2011, Danielle was implanted with a Nucleus C1512 cochlear implant in her right ear. In January of 2012, her device was explanted ( due to reports of intermittency, poor sound quality and static) and she was re implanted with a Nucleus Freedom cochlear implant. Her primary mode of communication is through spoke language; she is also fluent in American Sign Language.

Impressions

Hearing: Danielle's unaided hearing in her left (un-implanted) ear was assessed as part of this evaluation responses to pure tone stimuli were consistent and repeatable under inster earphones. Danielle demonstrated a moderate sloping to profound hearing loss in her left ear from 250-8000 Hz.

Technology: Danielle came to this evaluation using a MAP in her CP810- speech processor composed in the ACE processing strategy in her right cochlear implant. She was also tested with her own Oticon behind- the-ear BTE hearing aid coupled to her left ear. She was tested by means of standard audiometry in the soundfield. Responses to narrow band noise were considered to be of good reliability, indicating threshold levels of 10-20 dBHL for the frequency range of 250-6000 Hz with her cochlear implant, and 20-50 dBHL for the frequency range of 250-4000 Hz with her hearing aid. Speech awareness threshold were obtained to low " ba", mid "sh" and high " s" frequency speech stimuli at 5, 5 and 20 dBHL respectively with her cochlear implant and 15, 30 and 30 dBHL respectively with her hearing aid. These findings indicted that Ms. N has full access to speech at normal and soft conversational levels when using her cochlear implant and partial access with her hearing aid.

Speech Perception: Speech discrimination testing was performed at this evaluation using her cochlear implant and hearing aid.

Test:

CNC word list - Condition- 50dBHL , Right CI scored 72%

AZ Bio Condition- 50dBHL, Right CI scored 85%

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CNC Word List- Right CI & Hearing aid- Score 28%

AZ Bio- Right CI & Hearing aid - Score 70%

Recorded- Right CI & Hearing aid- Score 30%

Danielle scores for word and sentence recognition in quiet were judged to be fairly good using the cochlear implant ALONE. Scores in this condition are essentially stable since her previous evaluation in August 2011 (6 months post initial cochlear implant). Score in the bimodal ( CI + HA) condition are significantly lower than scores using the cochlear implant alone. However, it is important to note that today was the first time Ms. N used her hearing aid in combination with her CI.

Recommendations:

1- Continue full time use of cochlear implant.

2- Try using hearing aid in combination with cochlear implant to see if bimodal benefit exists.

Isn't this a great evaluation? I hear very very well with my implant alone. I have to use my hearing aid as well. Which I havent done yet because that day was so overwhelming. To much sound. My audiologist really wants me to have surround sound though. I'll try it tomorrow.

I dont understand anything on the letter what dBHL and 250-6000 Hz means? I am so confused LOL.

Hope you are having a great day!

Thursday, June 7, 2012

Hearing Aids

It has been awhile since I spoken about hearing aids.

Unfortunality as many of you know hearing aids are not covered by insurance companies. This frustrates me because hearing aids are expensive. I grew up wearing many different hearing aids, not realizing my parents paid out so much money just so I can hear. The worst part is I barely used them.

About two years ago I received my last pair of hearing aids that cost a fortune. This will probably be my last set of aids forever because its so expensive. Unfortunality two days after I received the aids I lost all of my hearing in my right ear. The right one is not being used because now I have the cochlear implant. But, lately I have been using my left hearing aid to watch TV because I have the streamer. When I watch tv whoever is talking on TV will go into my ear. I love this streamer.

Anyway, I do know that my insurance which is Empire United Healthcare does cover some of the cost of hearing aids. But the catch is its only every 5 five years they ONLY cover $500.00 for each ear. Then you have to pay the rest out of pocket. I think is ridiculous that WE have to pay a fortune just so we can hear. BUT insurance companies will pay for a $50,000 surgery? None of this makes sense to me. This is such a frustrating topic for me. In the future I hope insurance companies will ALLOW FULL coverage for hearing aids. There are so many people with hearing loss these days especially the little ones. Often I hear a child cannot hear or talk because their family DOES NOT have any money to buy them hearing aids. This breaks my heart.

I WISH I had all the money in the world to give every child who has a hearing loss the opportunity to hear. Starkey Hearing Foundation is a amazing organization.

Thanks Tammi who found this article and shared it on her blog.

Programs to help families pay for their child's hearing aids

Video:

How to put in a child's hearing aid

Have a good day!

Wednesday, June 6, 2012

Hearing Evaluation

Today I went into the city for my first hearing evaluation for my new processor.
My audiologist said I did extremely well with the implant. I heard all these low tones which
I never heard before. Then Jill put on a cd rom, I had to repeat back each sentence. This was pretty easy but this one man tone of voice was hard I started getting frustrated. His voice sounded muffled. The second time I had to repeat long sentences with background noise. I did okay with that. But, again that mans voice was so deep I had a hard time hearing what he was saying with the background noise.

I was also told to bring my hearing aid for my left ear today. Jill told me she wanted to test me with both the hearing aid and CI. This was my first time using my hearing aid with my implant. The sound was very overwhelming and also different. I had a hard time hearing my voice. I also had a hard time with sentences this time with both ears. It turns out that she wants me to use my left hearing aid because I havent worn a hearing aid in a few years in my left ear. Lastly, I was tested just for my left ear to see that ear is doing by itself. My hearing is still the same its severe- profound. For the next few days I have to wear my hearing aid for a while. I dont want to but she advised me to because my left ear hasn't had any hearing. She wants me to have surround sound.

In a few days I will be getting the report. I will be writing a post on that as well.

Time to time I have been thinking why was I born with a hearing loss. So today I asked my audiologist if there is a test to see why I was born this way. She advised me to speak with my surgeon its called " Genetic testing". She did mention that a lot of parents who have deaf children do this. I have seen alot of parents do testing for their child. This would be nice to find out why. I am going to make an appointment with my suregon tomorrow.

The other night I saw this video after signing out of my mail. I was surprised to see a video like this on yahoo. Check this out A boy hears his mom for the first time. This video made me so happy.

Technology is AWESOME!

Have a good night.. I will be back tomorrow.

Saturday, June 2, 2012

Hearing in the pool for the first time

A few days ago I spent the afternoon in the pool with my niece, my cousin and sisters. I wore my N5 processor. For the first time I heard the waterfall! I was able to communicate with ease. I was even able to hear everyone's conversation. On top of all the conversations I heard the music blasting.

When I first stepped into the pool the sounds were overwhelming to me because this is something I never heard before. At first I thought it was a dream. Sometimes its weird to hear sounds I never heard before. Honestly, I thought it was normal to not hear most of my life. I heard some sounds but nothing compared to what I hear now. To tell you the truth I never thought I would be able to hear.

This experience is so amazing to be able to hear. Hearing in the pool especially wiht my niece around is priceless. I know the N5 is " WATER RESISTANT" but I was afriad to go under water for a second. I really want to try this. Any suggestions?

I know a lot of children from their blogs go into the pool with the N5 but I dont know what I would have to use since im an adult.

Can you even hear sounds under water?

Have you went under water with your processor? If so what do you use to protect your processor?

I would really like to try this one time! Just to say I have experienced this.

Thanks Cochlear!!!!!!!! For this amazing experience.

Volunteering during May

On Friday May 25, 2012 I went to my local library to support Better Hearing & Speech Month. To let people know about Cochlear Implants. About fifteen showed up. Mostly parents who have deaf children. These parents are considering a CI for their child. One baby who is eighteen months old was born profoundly deaf. She does not benefit from hearing aids. The parents are learning American Sign Language as well. I was so glad I was able to help them.

This was a good experience for me I do wish more people came but I did try fifteen people is more than enough on short notice. I am glad everyone left happy.

For those of you that dont know where I live. I live on Long Island, NY. Long Island is huge. I am 30 minutes from New York City (NYC). Here on Long Island, I dont know anyone who has a cochlear implant. NOT even 1 person. I do know that there are a lot of people in NYC that have implants but I dont know them. My goal at this event was just to get the WORD out there that if you are deaf and cannot benefit from hearing aids anymore that there is another option out there for you!

My new goal for this summer is to find more YOUNG ADULTS on Long Island with CI's. I have looked numerous of times and for hours online. This is not so simple. I have to try harder to find people. I was also thinking of another idea, starting a website for young adults. This way people who are deaf in New York have a place to go. Maybe even do picnic events etc.

If you live in New York or If you know anyone in NY please have them contact me! Thanks so much.

Hope you are having a safe and wonderful summer so far!

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