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a little read from a newbie


steph*
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Hi everyone,

My name is Stephanie and I just got activated May 2. Here is a little about me...

I was born with a meningioma brain tumor that was discovered when I was 7 years old (1996) after failing a hearing test on my left ear. I had it removed soon after and then I developed meningitis post operative. Almost didn't pull through it, but I did, sacrificing 60% of the hearing in my right ear. So already being deaf in my left and now losing that, I didn't have much...but with a hearing aid, speech reading and sign language, I did very well. My hearing levels were unchanged for years until I hit 16 and my MRI showed a tumor regrowth. It was recommended that I go through CyberKnife Radiosurgery as my doctors felt they would never be able to fully get all of the tumor. A few years after that, at age 19 I woke up one morning and could not hear anything. (I had had moments growing up where I would wake up and my hearing would be diminished and funny and the doctors never knew why and would just give me antibiotics or prednisone and it would clear up by the next day.) But this time was different, it was like total deafness. I was rushed to my lifelong hero, Dr. Barry Hirsch.

Unfortunately, they were unsure why out of no where this happened. He gave me a prednisone injection into my ear and with time it cleared up; but was never the same. It was suggested the possibility of Menieres disease. Are you kidding me? Had I not been through enough? But I didn't have the vertigo, just the fluctuations in the hearing and the tinnitus and noises. 7 years pass of suggestion, but not diagnosis; 7 years of trying to figure it out. I had tried the water pills, reduced salt, everything. I found that chiropractic adjustments would help sometimes, but not always. Then all of a sudden in April 2015, vertigo hit me. It was so so so awful. It was happening constantly and local doctors suggested allergies affecting the Eustachian tube. Drugs after drugs and nothing was making this better. I was missing work and was afraid to drive.  I found a specialist in Chapel Hill, NC, 4 hours from me. Sure enough, they said menieres. I was absolutely devastated and as I started to cry just a little sitting in that exam room, you could see sadness come over my doctor. He gave me a script for valium, saying they had good success to calm the attacks down with it. During this visit he also brought up CI candidacy. I went home and sure enough it did help calm the attacks. The fact that I was still having them sucked and I was hating my life. I had always been a happy person though and it was hard for me to stay depressed for very long because, well, I wanted to live happy and laugh. As time went on, I noticed less attacks and in November of 15 was the last time I had vertigo. I am now 6 months vertigo free. I also had my hearing clear up and come back almost to where it had been 7 years ago. What!!?? How does that happen? Don't know and don't question it. During that time I had my CI evaluation. My doctor went with the flex 24 to save what I had and my hearing will be tested in a few weeks. Right now I have fluid and blood behind my eardrum so I am not hearing much. I hope it clears up soon so I can use my low frequency with the implant. I am very very fortunate that voices sound like voices to me. But I struggle with certain peoples speech and I am trying to figure out how to hear speech over all the noises in the background that I never heard before. TV sounds muffled and no clarity yet there. But I can hear birds chirping and rain! And those are the beautiful things you want to be able to hear. I am definitely frustrated because I don't have support from my family. My husband is great, absolutely fantastic. But my mom is always too busy to take a minute and listen and try to understand and simply doesn't care to. She thinks it is some miracle and all of a sudden I can hear everything crystal clear. I have four siblings and I have not heard from any of them since the surgery. I hope I get the hang of this and I hope my next mapping appt will help more. I appreciate any suggestions, etc from all of you. I will master this! By the way, did you know that flip flops are loud!!

I would like to hear thoughts on if you prefer the rondo or the sonnet, I have been going back and forth trying to figure out which I prefer.

 

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  • HearPeers Heroes

Welcome Stephanie and thank you for sharing your story. The journeys that brought us to CIs are varied but always complicated and interesting. I like both the Rondo and Sonnet. It sounds like you are off to a great start. You will find people here friendly and understanding. You may also want to check out MedEl Cochlear Implant Discussion Group on FaceBook. There are many active new users on there right now. Best of luck in your hearing journey.

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  • HearPeers Heroes

Wow Stephanie you've had a rough go. Welcome to Hearpeerrs. We are a group of rough goers and will be glad to listen anytime!! Please ask many questions and vent here and there. We will ALWAYS listen!!! I was implanted in November of 2015 and activated in December. I have a sonnet and I love it. I hear everything I hadn't heard for at least ten years. It truly is hard work. But well worth it. The thing I like about sonnet is that it is a BTE. I like that as it has two places where it touches my head so if it falls off it doesn't go far!! Please keep us updated on your progress we. Will be here!!

Kara

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  • HearPeers Heroes

Hello Steph :)

 

Welcome to the Hearpeers. 

I have read your story in just one hip - I can not be more original, but it is at least - interesting story.

I am not a CI recipient, I have different kind of implant (not for deafness) but by profession I am an ENT and am particularly interested with investigating of medical riddles. :)

Also, we hang out here regularly and cherish the feeling of social gathering. Please, share here or ask anything you might think of - we might have an answer, or at least a word for you. ;)

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Hello everyone, nice to meet you all. I look forward to chatting!!

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  • HearPeers Heroes

Steph,

 

feel free to write anything you are interested in. :)

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  • HearPeers Heroes

Hi Steph and welcome to Hearpeers. You have had quite a journey so far. I've had similar experiences with friends and family thinking the implant equals perfect hearing right away. I let them know that it takes baby steps and their support is crucial to my journey. You are lucky to have a supportive husband. It takes the 3 Ps - patience, practice and perseverance on everyone's part for this to be a success. Even after 2 years, I am still explaining to people. Please keep us informed of your journey. And yes, flip flops are loud.

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