NathalieM Posted September 23, 2023 Report Share Posted September 23, 2023 Hi! I'm Nathalie, Canadian from Windsor, Ontario. I was born profoundly deaf in both ears and have worn hearing aids my whole life. My first CI in the right ear was 18 years ago (2005) and currently wear the SONNET (this is my 2nd processor). With a gradual, slow decline in my hearing aid ear, I've been approved for a CI just 4 weeks ago, to be fitted as bilateral implants. I then just found out my surgery date is set for October 10th (got a full-on panic attack, but then took stock of getting myself ready)! I will also be replacing the SONNET with a newer processor -- undecided between the SONNET 2 or RONDO 3. I have been using the Roger pen for years to listen to podcasts, music, phone calls, etc and I'm an avid Apple user. Thank you for this great community of support - I joined a short couple of weeks ago and have learned SO MUCH!!! Looking forward to our GoogleMeet group this Sunday 😁 Mary Beth and Anthony Canada 2 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted September 23, 2023 HearPeers Heroes Report Share Posted September 23, 2023 Very exciting @NathalieM! NathalieM 1 Quote Link to comment Share on other sites More sharing options...
Lauren Posted September 24, 2023 Report Share Posted September 24, 2023 It was nice to meet you @NathalieM! Thank you for sharing your story. NathalieM and Mary Beth 2 Quote Link to comment Share on other sites More sharing options...
NathalieM Posted September 24, 2023 Author Report Share Posted September 24, 2023 So great to meet you @Lauren and everyone else as well! Can't wait to share more of my journey while I discover others' - I'll try not to get so emotional 😆 Lauren and Mary Beth 2 Quote Link to comment Share on other sites More sharing options...
Ricky Posted September 26, 2023 Report Share Posted September 26, 2023 On 9/22/2023 at 8:37 PM, NathalieM said: Hi! I'm Nathalie, Canadian from Windsor, Ontario. I was born profoundly deaf in both ears and have worn hearing aids my whole life. My first CI in the right ear was 18 years ago (2005) and currently wear the SONNET (this is my 2nd processor). With a gradual, slow decline in my hearing aid ear, I've been approved for a CI just 4 weeks ago, to be fitted as bilateral implants. I then just found out my surgery date is set for October 10th (got a full-on panic attack, but then took stock of getting myself ready)! I will also be replacing the SONNET with a newer processor -- undecided between the SONNET 2 or RONDO 3. I have been using the Roger pen for years to listen to podcasts, music, phone calls, etc and I'm an avid Apple user. Thank you for this great community of support - I joined a short couple of weeks ago and have learned SO MUCH!!! Looking forward to our GoogleMeet group this Sunday 😁 Are you having the implantation in London? Quote Link to comment Share on other sites More sharing options...
NathalieM Posted September 26, 2023 Author Report Share Posted September 26, 2023 @Ricky yes I am! Dr. Parnes is my surgeon. Are you in the same are? Serena Metzler 1 Quote Link to comment Share on other sites More sharing options...
Ricky Posted September 26, 2023 Report Share Posted September 26, 2023 He implanted mine nearly 5 years ago, he is very good at what he does. I live in Waterloo. NathalieM 1 Quote Link to comment Share on other sites More sharing options...
NathalieM Posted September 27, 2023 Author Report Share Posted September 27, 2023 That's great to hear! I don't know anyone else who's had him and I personally have had good history with an 18 yrs old implant! 😆 Quote Link to comment Share on other sites More sharing options...
Gerda Posted October 1, 2023 Report Share Posted October 1, 2023 On 9/26/2023 at 11:49 AM, NathalieM said: @Ricky yes I am! Dr. Parnes is my surgeon. Are you in the same are? On 9/26/2023 at 6:53 AM, Ricky said: Are you having the implantation in London? On 9/27/2023 at 9:41 AM, NathalieM said: That's great to hear! I don't know anyone else who's had him and I personally have had good history with an 18 yrs old implant! 😆 Hello Nathalie i live in London On and was implanted 7 years ago. My surgeon was Sumit Agrawal who is also amazing and wonderful. I would have loved to implant my other ear but Dr Parnes said my balance was already compromised and therefore too risky. Gerda NathalieM 1 Quote Link to comment Share on other sites More sharing options...
NathalieM Posted October 1, 2023 Author Report Share Posted October 1, 2023 Oh, that's too bad @Gerda! Did you get a vestibular testing/balance test to see if you would be compromised? I think it's great to at least have a heads up. Quote Link to comment Share on other sites More sharing options...
Gerda Posted October 1, 2023 Report Share Posted October 1, 2023 Yes, he asked for me to have the vestibular testing and the results were what convinced him that I was simply not eligible for the second one so I have to be grateful and I am very grateful. It's a beautiful day and I am out walking my dog, and Dr. Parnes said I might have to be in a wheelchair if I lost my balance more. NathalieM and Dianna 1 1 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted October 7, 2023 HearPeers Heroes Report Share Posted October 7, 2023 @NathalieM We will be thinking of you on Tuesday and hoping your second side CI surgery goes great! When you feel up to it, let us know. NathalieM 1 Quote Link to comment Share on other sites More sharing options...
NathalieM Posted October 10, 2023 Author Report Share Posted October 10, 2023 Thank you @Mary Beth!! Into pre-admin…surgery’s at 1pm EST 😁 - it’s happening!!! Gerda 1 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted October 10, 2023 HearPeers Heroes Report Share Posted October 10, 2023 Sending positive thoughts your way @NathalieM!! Gerda 1 Quote Link to comment Share on other sites More sharing options...
Lauren Posted October 10, 2023 Report Share Posted October 10, 2023 @NathalieM good luck! Mary Beth 1 Quote Link to comment Share on other sites More sharing options...
NathalieM Posted October 13, 2023 Author Report Share Posted October 13, 2023 Hi all - post-surgery going great so far. No nausea or dizziness (and very, very grateful for that!). Feeling all the feels today though…pressure, tightness around the staples, hair starting to stick out 😆, sounds from other CI seem abnormally loud (must be the stress) - just trying to be patient 👌✌️ Gerda, Dianna and Serena Metzler 3 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted October 13, 2023 HearPeers Heroes Report Share Posted October 13, 2023 Yay and welcome to the bilateral CI club! Be kind to yourself while healing and consider decreasing the volume on your other CI until things settle down. When is your activation? @NathalieM NathalieM 1 Quote Link to comment Share on other sites More sharing options...
NathalieM Posted October 13, 2023 Author Report Share Posted October 13, 2023 I'm definitely going to turn down my right CI - I even just took it out to give it a rest. Activation is November 10th. I asked about activating a week earlier and my audi recommended waiting the full month to ensure swelling is well reduced so the magnet is strong enough to stay attached. I do recall using a stronger magnet for the fist few weeks on my first CI so I'm ok with waiting 😊 Anthony Canada and Mary Beth 2 Quote Link to comment Share on other sites More sharing options...
Anthony Canada Posted October 13, 2023 Report Share Posted October 13, 2023 @NathalieM with my Rondo 3 I used a #4 magnet for the first two months and now I'm down to a #3. NathalieM, Serena Metzler and Mary Beth 3 Quote Link to comment Share on other sites More sharing options...
Serena Metzler Posted October 13, 2023 Report Share Posted October 13, 2023 Welcome NathalieM 1 Quote Link to comment Share on other sites More sharing options...
Ray Chan Posted December 5, 2023 Report Share Posted December 5, 2023 On 9/27/2023 at 9:41 AM, NathalieM said: That's great to hear! I don't know anyone else who's had him and I personally have had good history with an 18 yrs old implant! 😆 Hey Natalie, I also had Dr. Parnes for both my implants. This years been a bit of a mess for me and I actually had both Left and Right implants inserted, all within seven months. Started out late last year getting bad headaches. Complained for months of how severe they were. I actually work for the OPP, and was stationed in Chatham when I first got on. I also covered Essex County so all Communities around Essex that are Policed by OPP. (I live in the London area now) My headaches got so bad, I couldn't function and had to stop working by early December of 2022. Doc finally took it a bit seriously and requested and MRI. They scheduled the MRI for September of this year. At that time, it was January so nine months away. Near the end of January just after my 45th Birthday, I almost flat lined. Wife brought me to hospital, the treated the symptoms, felt better and sent me home. Got home but after a couple of hours, got really sick again and went completely deaf in a the matter of minutes. Went back to the ER. Now they take it bit more seriously and page a specialist. They do a Lumbar Puncture, that returns, "Ray, ummm, you have Menenigitis, we better get that MRI on a life or death situation." Get the MRI, "Ray, ummm, you have a large Blood Clot in your Brain and a tremendous amount of Inflammation around your brain." Noooooooo kidding, you think that would cause some debilitating headaches eh????.... that i've been complaining about for the past few months. Because I went deaf so recently and suddenly, they put me on a priority list to Left Cochlear Implant inserted. I had already gone completely deaf in my Right from late side effects of Cancer back in 2008, just before 30th Birthday. Seems like I always get bad presents around my birthday. Dr. Summit Agrawal was generally my ENT and was going to do the operation, but because of the complication of the events causing me to go deaf, they opted to have Dr. Parnes do the surgery in March. Unfortunately, implant failed. He was short by .3cm getting the implant in and only 9 of the 12 electrodes. During activation I heard nothing from any of the electrodes. About a month later, I asked if they'd consider doing my Right ear. I didn't they would consider as I went Deaf in my Right ear back in 2016 and from late side effects of Radiation, so I figured i'd have no chance, plus the recent Meningitis that cause me to go deaf in my left ear, who's to say it also didn't effect my right ear the same way. Surprisingly, just after a few days, I get an email back from them that they will attempt to put the implant in my right ear. That was in Sept. 3rd. Activated on Oct. 2nd. I had little hope it was going to work. Activation day, Audiologist starts with tuning the first electrode,..... No sound. I almost just wanted to give up then there. There's a long history of issues since cancer and then going completely deaf, and now also have Vestibular balance issues (currently doing Vestibular Physio), but she convinced me to going as they had got 11 of the 12 electrodes in. Next electrode, I thought I heard something but couldn't distinguish between my tinnitus or an actual sound from her machine. I see her bumping up the power and the beeps I heard got louder so I knew it was from the electrode. Had to shed a tear of happiness. The rest of the electrodes worked. First day was a mess of sonar sounding like sounds. Next day though, I started to faintly hear voices (watching Mr. Dressup Documentary) LoL. But I could only make short words like 'my', but I had to focus tremendously on trying to make it out. Now two months post activation, can't say much has improved hearing voices wise, but definitely a lot more frequencies and tones. Just thought I'd give you a shout out, and if you're ever at the ENT office and see someone who looks like the guy in my profile pic and even the Black Lab, he's my Service Dog, "Cosmo". Be sure to say hi! NathalieM 1 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 welcome to HearPeers. I am sorry you have experienced so many medical complications. I hope your new CI continues to improve. Wishing you the best. Ray Chan 1 Quote Link to comment Share on other sites More sharing options...
Gerda Posted December 6, 2023 Report Share Posted December 6, 2023 I am also a patient of dr Agrawal and live in London On. I was implanted in 2016 so I sympathize with your challenges and wish you the best. NathalieM 1 Quote Link to comment Share on other sites More sharing options...
NathalieM Posted December 7, 2023 Author Report Share Posted December 7, 2023 Oh Wow @Ray Chan - so sorry to hear about your struggles! And such a journey - I truly wish you the best and hope it continues to improve from this point on! I've been battling dizziness since a week after activation. I go back this Friday and will be asking to turn off and/or greatly reduce the higher frequencies electrode(s). Tomorrow morning, I will be seeing a physiotherapist who specializes in vestibular rehab - I'm hoping all this combination will help alleviate the dizziness issues. I'll post back with my progress here in the forum Mary Beth 1 Quote Link to comment Share on other sites More sharing options...
Gerda Posted December 7, 2023 Report Share Posted December 7, 2023 I did a year of vestibular rehab at Neuphysio in London. It helped significantly although I am told the condition is permanent. NathalieM 1 Quote Link to comment Share on other sites More sharing options...
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