Jump to content

Hello from Southwest Ontario, Canada


NathalieM

Recommended Posts

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 ūüėĀ

  • Like 2
Link to comment
Share on other sites

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 ūüėÜ

  • Like 2
Link to comment
Share on other sites

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 ūüėĀ

Are you having the implantation in London?

Link to comment
Share on other sites

He implanted mine nearly 5 years ago, he is very good at what he does. I live in Waterloo. 

Link to comment
Share on other sites

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! ūüėÜ

Link to comment
Share on other sites

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! ūüėÜ

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

Link to comment
Share on other sites

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.

Link to comment
Share on other sites

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. 

Link to comment
Share on other sites

  • HearPeers Heroes

@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.

Link to comment
Share on other sites

Thank you @Mary Beth!! Into pre-admin‚Ķsurgery‚Äôs at 1pm EST ūüėĀ - it‚Äôs happening!!!

Link to comment
Share on other sites

Hi all - post-surgery going great so far. No nausea or dizziness (and very, very grateful for that!). Feeling all the feels today though‚Ķpressure, tightness around the staples, hair starting to stick out¬†ūüėÜ, sounds from other CI seem abnormally loud (must be the stress) - just trying to be patient¬†ūüĎĆ‚úĆÔłŹ

  • Like 3
Link to comment
Share on other sites

  • HearPeers Heroes

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

Link to comment
Share on other sites

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 ūüėä

  • Like 2
Link to comment
Share on other sites

@NathalieM with my Rondo 3 I used a #4 magnet for the first two months and now I'm down to a #3. 

  • Like 3
Link to comment
Share on other sites

  • 1 month later...
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! ūüėÜ

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!   

Link to comment
Share on other sites

  • HearPeers Heroes

@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.

Link to comment
Share on other sites

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.

Link to comment
Share on other sites

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 :)

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...
×
×
  • Create New...