Ray Chan Posted December 5, 2023 Report Share Posted December 5, 2023 A bit of long story. Within seven months, starting in March of 2023, i've had three Cochlear surgeries. First attempt was to put an implant in on my left side, but during the operation, there was too much inflammation around my brain and I also head an ear infection. (I'll get to the details leading up the surgeries in a bit). Since it wasn't ideal to insert the implant at that time, they only performed a mastoidectomy. A little over a month later, a second attempt to put the CI in which they did get it in, but .3cm short and only 9 of the 12 electrodes in. One month later, Activation time... no go, Implant, or rather my Cochlear Nerve was damaged beyond the point of ever hearing on my left side. The reason the left side was chosen, was I went completely deaf in my Right ear in 2016 due to late side effect of Nasopharyngeal Carcinoma back in 2008, just before my 30th birthday. Late last year, I started developing extreme headaches. Thinking with the history of my Cancer, they would have taken it a lot more seriously and their due diligence. I unfortunately failed to advocate more for myself put my trust in the doctors. Headaches become so debilitating that I could not work. Docs finally decided to request an MRI. This was January 2023 at the time, MRI wasn't scheduled until Sept. 24th, 2023... NINE MONTHS AWAY. By late January, just after my 45 Birthday, things turned for the worse, I got extremely sick and within a matter of minutes I went deaf. Now doctors finally taking it serious. Lumbar Puncture was done, ironically, a Resident Neurologist had suggested to this a month prior, but the Attending Doctor said it was better to wait for the MRI. Well, when the got results back from the Lumbar Puncture in the ER, they discovered I had Meningitis. Now even more serious, they sent me for an MRI on a Life or Death situation. The results of that, a Massive Blood Clot in brain and a tremendous amount of inflammation around my brain most likely due to the Meningitis (Viral). After recovering from that illness, it was on their priority to get the CI in my left ear ASAP as I had just gone deaf and reason being, it would have more chance of success to get it in as soon as possible after the loss of hearing, but it was unknown if it it was Nerve damage or Organ damage that caused the hearing loss. About a month after activation and not working, I had asked if they would consider putting one in on my Right side, even though the hearing loss was from back in 2016 as a result of late side effects of Cancer, but again, it was unknown if the Nerve was damaged or the organ. To my surprise, just a few days after I get a response that they agreed to attempt to put the CI in on my Right side. Activation was Nov. 2nd, 2023. Tuning started about bad as the first electrode did not work. I had a bit of a hard time continuing as it was a repeat of the Left side, but they did get the Implant in all the way and 11 of 10 electrodes in. Please also keep in mind that i'm also a survivor of Cancer, that also meaning, i'm dealing with a lot of other side effects from treatment and adding the loss of hearing to what was already a difficult stive of life, I just wasn't sure If I could handle it. ....and Don't Ever say to me, "It could be worse..." I've learned the people, and even doctors judge by what they visually see. But the Audiologist convinced me to keep going as we still had 10 more electrodes to go. The next one, i'm trying to distinguish if it's my tinnitus i'm hearing the sound that the computer is making. I see the audiologist boosting the power and now i'm convinced, the beep i'm hearing is from the electrode. I just looked up at her and she knew I was hearing something. I think we both shed a tear of happiness. The rest of the 9 electrodes worked, so 10 of the 11 are working. Now just over a month post activation, I do make some words here and there but they're very faint and must be in the most idea condition. Tone of Voice, no ambient noise... you guys know what I mean. I'm glad to be apart of this group. I just joined last night so i'm still catching up on a lot of the posts and some great reading, however, i'll ask, if you had a similar situation as mine or recently had an CI within the past couple of years and around the same age as me, 45, send send me a message as I'd love to hear your story. Thanks Guys! Ray Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted December 5, 2023 HearPeers Heroes Report Share Posted December 5, 2023 @Ray Chan If you are interested in meeting some of us in a captioned GoogleMeet, follow this link and reply there and we will set you up. Quote Link to comment Share on other sites More sharing options...
Members Tim Posted December 5, 2023 Members Report Share Posted December 5, 2023 @Ray Chan Nice to meet you. Sorry to hear about your hard road. All of our hearing journeys are different. I'll give the quick version down below. All of these are discussed in greater (too much?) detail in other threads to help me keep track of what I went through and hopefully be of some help to others. Feel free to look at my past posts. I started losing my hearing in one ear shortly before turning 40 and finally got a CI at the age of 56 in January. It has gone pretty well for me. Not a rock star activation but was able to start doing podcasts and audiobooks at about the 2-3 month mark. My biggest complication was sudden onset vertigo/nausea that could last over 6 hours. Only had 3 episodes but that was more than enough. Went to vestibular physical therapy about a half dozen times and "graduated away". Balance might be about 90% as good as it used to be but I can get up and work on clearing leaves & needles from my roof again last week - not something that I would have tried earlier this year. I've gone into doing rehab pretty aggressively between apps, podcasts, audiobooks, and Spotify. (Spotify says I listened to 24808 minutes of music from January through November. Most of it for the purpose of rehab.) Had the pre-op CT for otoplan and post-op CT for anatomy-based-fitting. Alas my ABF was about 6 months after activation and didn't help me so I went back to the pre-ABF. Things keep improving. I'm able to do audiobooks at an accelerated speed (1.05 x to 1.5x depending on the narrator and content.) If I can be of any help, let me know. Ray Chan 1 Quote Link to comment Share on other sites More sharing options...
Ray Chan Posted December 5, 2023 Author Report Share Posted December 5, 2023 Hi Tim, pleasure to meet you, just read your message, thank you for reaching out. I'll be sure review the history of your posts, but I just have a question with the detail you mention thus far. You say you were starting to lose hearing in 'one' ear. Does that mean you've never lost hearing in the other? Quote Link to comment Share on other sites More sharing options...
Ray Chan Posted December 5, 2023 Author Report Share Posted December 5, 2023 23 minutes ago, Mary Beth said: @Ray Chan If you are interested in meeting some of us in a captioned GoogleMeet, follow this link and reply there and we will set you up. 24 minutes ago, Mary Beth said: @Ray Chan If you are interested in meeting some of us in a captioned GoogleMeet, follow this link and reply there and we will set you up. Thanks @Mary Beth! Something I'll definitely consider! I know for some, this may be an absolute turning point in life, but for me, it's just another challenge on my plate that was already full. Been trying to figure out my place after surviving Cancer which wasn't already going all that well. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted December 5, 2023 HearPeers Heroes Report Share Posted December 5, 2023 @Ray Chan It is always an option when or if you feel like joining in. Ray Chan 1 Quote Link to comment Share on other sites More sharing options...
Members Tim Posted December 5, 2023 Members Report Share Posted December 5, 2023 53 minutes ago, Ray Chan said: You say you were starting to lose hearing in 'one' ear. Does that mean you've never lost hearing in the other? Yes, I am lucky to still have normal hearing in one ear so I count as just singled-sided deaf. I have 0-20 dB attenuation in my good ear but over 100 dB after surgery in my bad ear when not using my CI. This is why I put "SSD" in my signature for posting messages so people can put my messages in context. Quote Link to comment Share on other sites More sharing options...
Ray Chan Posted December 6, 2023 Author Report Share Posted December 6, 2023 LoL, I haven't learned all the acronyms yet. I'm a technical person so SSD means Solid State Drive to me... LoL Now I know it means single-sided deaf. Here in Canada, in the province of Ontario anyway, our health care system(yes free) but has it's downs too. They would not cover the cost of CI if you still have hearing on one side. So when I went deaf in my Right ear back in 2016, they would not consider a CI, and I had to resort to a 'Cros' hearing aid system where I wore hearing aids in both ears but the one in the right ear would just be a mic that spit the sound over to the left hearing aid, so all sound went into my left ear. I got used to it, but far from obviously having bilateral hearing. Quote Link to comment Share on other sites More sharing options...
Members Tim Posted December 6, 2023 Members Report Share Posted December 6, 2023 I'm a techie too - love my TLAs and ETLAs (three letter acronyms and extended three letter acronyms). CI for SSD was only approved the US Food and Drug Administration a couple of years ago so I was repeatedly rejected in 2016 when I first tried to get a CI. The insurance companies considered it an off label or experimental treatment for SSD and had no interest in covering it until given how expensive it is. The result was I spent about 6 years using a bone conduction device with little benefit. Quote Link to comment Share on other sites More sharing options...
Tammy B Posted February 20 Report Share Posted February 20 Hello, my cochlear implant is very new. I have been hard of hearing in my right ear since I was a child (they think it was caused by the chicken pox I had). It got worse as I got older. Then a couple of years ago I developed Ménière’s Disease in my left ear. I started wearing Bi-cross hearing aids and started to struggle more with them as well. I went to two different specialists. The one was the doctor that diagnosed me with Ménière’s disease but he just confirmed that is what I have and said he did not need to see me again, the 2nd was ok on my first visit but on the second visit tried to tell me I was deaf in my left ear from a stroke. He also had the nerve to tell me as long as I wore my hearing aids I could hear fine. Needless to say I never went back to him. I was referred to a third specialist and when I finally got my appointment I thought he was only going to help me manage my Ménière’s disease. Well he did tell me he will help me with that but he was more concerned about my hearing. Sorry this has been a long story but after all the assessments I qualified and got a CI in my right ear. I just wanted to share my story to let others know the although it can be a long and discouraging road, continue to advocate for yourself. I will be forever grateful to Dr. Agrawal. Tim 1 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted February 20 HearPeers Heroes Report Share Posted February 20 @Tammy B congratulations on your CI and welcome to HearPeers! Which processor are you using? Quote Link to comment Share on other sites More sharing options...
Tammy B Posted February 20 Report Share Posted February 20 3 hours ago, Mary Beth said: @Tammy B congratulations on your CI and welcome to HearPeers! Which processor are you using? The Rondo 3 Mary Beth 1 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted February 20 HearPeers Heroes Report Share Posted February 20 @Tammy B If you would like to join in our March GoogleMeet with automatic captions, just follow this link and reply there. Quote Link to comment Share on other sites More sharing options...
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