Newly Implanted, Single Sided Deafness.

[Rachael]

Hi everyone.   My name is Rachael, and I’m from Toronto, Ontario.  On March 2, 2021 at the age of 40, I went totally deaf in my left ear within an hour after suddenly starting to hear screeching and hissing.  

I immediately tried every treatment made available to me - 10 days of 50mg oral prednisone, 6 intratympanic shots, and even underwent 30, two-hour sessions of hyperbaric oxygen therapy.   I was initially slated to do 20 sessions of HBOT, but because I regained some low frequency hearing a month later, they had me complete 10 more sessions.  Months passed and I only regained the slightest bit more low frequency hearing so I was scheduled for CI surgery.

I was implanted on October 26^th last month at Sunnybrook and I received my sound processor last Tuesday.  I have my second mapping/rehab appointment tomorrow.  I was able to retain my residual low frequency hearing so I went with the Sonnet 2 EAS.  

Since day one of my sudden hearing loss, I have been afflicted with severe tinnitus.   The ongoing tinnitus is the driving force behind me wanting to get implanted as I have come to know that I may receive some relief once I continue to use my sound processor.  I hope others here can attest to this!

Looking forward to getting to know fellow implantees 😊

[Mary Beth]

@Rachael

Congratulations on your activation.  I have had tinnitus for decades and after my right ear lost all ability to hear following a surgery for Ménière’s disease, the tinnitus was loud and constant.  24 years later that ear was implanted.  At first after activation, the tinnitus was not noticeable while wearing the processor but it was very loud and crazy at night.  Thankfully the night tinnitus eased off over time.

Now I do not notice my tinnitus while wearing my processors and at night it is much quieter.  I hope you are as fortunate.

 

Wishing you the best on your CI journey.

[Rachael]

Hi Mary Beth.    Thank you for your reply.  That's amazing that you were able to get some tinnitus relief after 24 years.   No change in my tinnitus yet, but am hoping with some more mapping adjustments, things will get better.  

[Kylie]

Hi @Rachael

My journey is somewhat similar - I am single sided deaf, having suddenly lost my right side from an ear infection in my late 30s. I have been implanted for 2 and a half years now and as well as amazing hearing, my tinnitus has over time decreased to insignificant (from severe and very depressing). There was some relief immediately when wearing my processor but it really got better and better over months. I now think my brain forgets about it completely. I can only experience it when it TRY. Which of course I don't usually. I hope this is also the case for you!

[Dianna]

Hi, my journey is similar, implanted august 27, activated sep 10, 2 mappings, my 3 month due on dec 10.

I had tinnitus for years, even with hearing aids. Mine was like being in a bird cage with hundrrds of birds tweeting. I still had some while healing. Long ago i was told tinnitus was sound my brain wanted to hear! Since activation i have heard no brain birds (laugh) but i sit outside and listen to real birds alot! My case was mild i guess compared to others but my theory is that once you train your brain for that sound, it hears it enough actually hearing, the tinnitus sound goes away. Does that make sense? Im no scholar, but i read all the time in chat rooms after implant, activation and rehab, most lose the tinnitus.

Take care and enjoy your hearing journey. Im lucky enough to be able to humorize weird sounds along the way...

[Rachael]

@Kylie It has been very depressing - hoping for that light at the end of the tunnel with more rehab.  I feel terrible for anyone that has aggressive tinnitus for years with no end in sight.  I love your line about only experiencing it when you TRY.  I now have a new goal   

@Dianna I have so many different sounds going on!  Clinking, hissing, not quite tuned in radio, popping, hissing, squealing and dripping.  I often describe it  "science fiction movie laboratory" depending on what frequency my tinnitus has decided to choose at the time.   No brain birds though, haha, I love it.

Thank you both for sharing your experiences.  It gives me hope!  

 

[Dianna]

Hi Rachel,

Im so sorry its going so slow for you, i think i would call my weird sounds in the beginning were more what i call doinky. When i first got home the water sounds sere soooo high pitched and loud it nearly hurt to get used to them, like silver to ceramic was extremely "doinky', shopping bags or potato chip bags wete very hissy. It was summertime so in some of our rooms i heard this hissing and took awhile to rdcognise small fan noises. When the oven fan was turned on o couldnt figure that out for a couple of days. Our cat water dish is like a waterfall, took me three days for that to stop sounding like hissing water. Silverware, car keys, did i mention spoons clinking in a bowl? After my second mapping i came home to soup of all things, lol 4 people at the table doinking.

I was so excited, and had lots of time to do angel sounds, ab clix, i also streamed at least 30 minutes of instrumental music. It takes a bit, but every day the doinks get better and turn into real sounds. Medel has some suggestions and i followed them, listening to simple music. If anything its calming, then the notes started sounding like notes! 

I hope visiting us is encouraging for you, every one here wants you to succeed 💘 

[Andrew42]

Rachael. I have had some tinnitus for years. Constant but never really bothering. Between implant and activation I got a new tinnitus sound in my implanted ear. It started low pitch and low volume, crescendoed to a relaively high pitch high volume, (but not uncomfortable) and the dies away to nothing all in the sapce of about 20 seconds. This would recur constantly. Post activation, there was no change at first. Now the new tinnitus sound in my implanted ear has disappeared and, for the most part, I am not concious of any other strong tinnitus so long as my Rondo is activated. At night without either Rondo or Hearing Aid I have some tinnitus but it is less than before I was implanted. In summary, there was no immediate improvement post implant or post activation, but now over two months after implant and three+ weeks after activation there has been definite change and improvement. 

Keep the faith!

[Jared Charney]

Hi @RachaelI lost all hearing in my right ear after returning from a family vacation / was taken the hospital for vertigo and was never treated for sudden hearing loss. For about 3 years I suffered from tinnitus that truly wreaked havoc on me both mentally and physically. Just over a year ago I had the CI surgery and for the month I had to wait for healing etc. my tinnitus was at its worst as I'm sure the surgery "rattled the cage". On day one of activation as long as their is sound coming into the CI I don't hear it at all. It was def. the first step to recovery. I wish you all the best !

[Rachael]

I really appreciate all of the replies.  I'm so glad that I decided to introduce myself.   I've definitely been bummed that turning on my sound processor didn't relieve me of my tinnitus - I need to manage my expectations.   When I'm streaming directly into my implant, I can still hear the tinnitus squealing in the background.  I'm hoping that as I continue rehab and exposing myself to sounds in daily life that it will start to quiet down.  I'm trying to be patient as I'm only on day 10 post activation.

@Dianna Thanks for this detailed answer.  It's so relatable that it's comforting.

@Andrew42 Thanks for sharing your timeline.  At only 10 days post activation for me, it may take me past 3+ weeks as well  for the tinnitus to die down.

@Jared Charney Thanks! I had the same "rattle the cage" experience.  I felt like I woke the dragon after surgery, which I didn't think could get any worse.  Then my ear started to depressurize about 2+ weeks in and it went back to it's normal level.

Thanks for cheering me on everyone.  I truly appreciate it!