To cochlear implant or not to cochlear implant?

[agapelmh]

I am new to this site. I'm 38, married, with three kids (ages 6, 4, and 9mo. Just before Christmas 2022 I started to get sick. It became so unbearable that I went to the ER on Christmas Eve where they gave me fluids and did a blood test. They said my white blood cell count was abnormally high and I should get that followed up in a week with my PCM. The morning after Christmas my husband came in the room to see if I was well enough to come out and watch the kids open presents. Instead he found me comatose and called 911. I woke up in the hospital several days later with no knowledge as to how or why I was there. I had strep pneumo meningitis.

I continued in the hospital for another month recovering and re-learning to walk. I was mentally unchanged, but my hearing was significantly damaged. I was discharged and went home and got to see kids again. After a rather rough two weeks, I was back in the hospital again with blood clots all over (side affect of the sepsis). I continue to be on IV antibiotics through a central line, and because I have abscesses in my brain from the infection, they do not want to put me on blood thinners yet and risk a brain bleed. We have an MRI next week to see if the infection and abscesses are cleared. Then I will be put on blood thinners for probably three months.

Had an appointment with a cochlear implant dr today. I am fully deaf in my left in and have lost about %50 in my right (mostly loss of high frequencies), and I have had ringing in both ears since being in the hospital.

He said I am an ideal candidate for a cochlear implant in my left ear and may want to pursue the same for my right ear eventually. He said with meningitis, the inner ear can continue to suffer damage so the sooner the better. He wants to do the surgery within the next month.

This feels like a lot to take in because two months ago I had perfect hearing. With my right ear I can hear some and rely on lipreading, so I am getting by...ish.

Wondering if others suffered sudden meningitis hearing loss as an adult? Did the hearing loss and ringing ever improve? Would those with a cochlear implant recommend it? I have been told that the hearing is very different- like a transistor radio and takes a lot of adjustments and getting used to. Just not sure what to do since I have to make what feels like a pretty life altering decision in the next week or so on a cochlear implant for the left ear.

Thanks for reading and for any recommendations.

[Cryptococcal_Ninja]

Yeah no doubt it's a debilitating loss/change. About 4.5 yrs ago I had a fungal infection lingering that couldn't be diagnosed even though issue after issue kept happening. Ended up morphing into cryptococcal meningitis and destroyed my hearing, balance, memory, taste, smell, etc in a matter or weeks. Also led to facial paralyzation, 2 small strokes, etc. Finally an LP was done and bingo, there it was. Took over 2.5 yrs of aggressive daily antifungal treatment to finally get rid of it. Profound hearing loss in both ears... right one was recovering nicely, no doubt due to prednisone use. Have been on it daily for over 10 yrs now for asthma. Was told by Infectious Disease that if I couldn't minimize my use of it the cryptococcal could recur as it had weakened my immunity. So... as the prednisone dose dropped so did the hearing in that one ear. Living totally deaf is tolerable, but the pressure and tinnitus is unbelievable at times.

I sought testing at UNC Audiology and was told Cochlears were the only possible fix, but no guarantees at all on how much hearing might recover. Possibly none at all and Cochlears aren't a fix for tinnitus either based on surgeon's findings. Actually was scheduled for surgery, but when an MRI was done there were signs of lots of infection still looming, so it was canceled obviously. That was 4 yrs ago and to me the implants cons outweigh the pros so I won't bother. All cases vary, but over the past 1 yr I have seen two people wearing Cochlears and in a public setting both still had to rely on lip reading, ask for things to be repeated while leaning closer to those speaking, etc. I will gladly say that I can live just fine being deaf as my vision wasn't affected as that would be far worse IMBHO. Good luck!

[agapelmh in reply to Cryptococcal_Ninja]

Thanks for your helpful feedback. Sorry for everything you have been through. Out of curiosity do you rely on lip reading or did you learn sign language, etc? Thanks again.

[Cryptococcal_Ninja in reply to agapelmh]

Decided learning ASL wasn't worth the time/effort as very few people I'm around on a regular basis don't know/use it. I've gotten use to lip reading, observing body language, etc. and use my phone with a few speech-text apps for more important conversations. Also use a speech-text app to make phone calls as it translates in quite accurate real time. Getting used to not hearing anything around me was far more difficult/annoying than communicating with others. I was always observant in the past, but am much more now due to this happening.

Every case is different as in nerve damage, etc. as well as expectations/experiences, but many I've chatted with said if you're born deaf and suddenly have hearing restored with implants it's likely the best thing to have in life. BUT if you had great hearing (like I did) and it was taken away then restored somewhat with implants don't expect it to be nearly as good as what you were used to. Combine that sort of struggle with the negatives with implants and I decided that I am doing pretty good dealing with things as they are. Simply don't need more surgery/expense that could possibly lead to more health complications/aggravation.

[agapelmh in reply to Cryptococcal_Ninja]

Thank you for your reply, that is super helpful. That is my biggest hesitation- I am familiar with perfect hearing so recently ago that once the drs switch on the device I know would hate it and immediately regret it. Plus I do have some hearing in my right ear it is not an ideal situation, but I am able to get by. Thanks again for sharing your experiences.

[Cryptococcal_Ninja in reply to agapelmh]

In your case I would consider a small hearing aid for the side that is functioning. When my right ear was recovering early on I was totally fine with what I had to work with, but of course that faded. I could've possibly saved the hearing if I chose to stay on large doses of prednisone as I know it was minimizing inner ear inflammation, but had I done that it's likely I would've had a recurring infection with possibly worse side effects. Good luck and as we tend to say, embrace your new normal as it is what it is. We all survived for a reason.

[Lolalamb]

Hi my name is Jane, I had bacterial meningitis 4 years ago past Xmas. I was 3 weeks in hospital , 8 months off work. It is a long long recovery, I had double vision, balance issues and hearing loss. I have totally lost the hearing in my left ear due to nerve damage and I had partial loss of hearing in my right ear which has greatly improved. I wear a cross hearing aid, so I wear a hearing aid in both ears, the left hearing aid picks up sound from the left and transfers it to the right which is good as it also improves hearing in that ear too. That may be something to consider. I suffer with tinnitus too in both ears even in the ear I have no hearing in but my consultant said that you get tinnitus when there is a loss of hearing so will have it for life. My eye sight went back to normal after 5 months but I still have balance issues but did get back to full time working after nearly a year. Take care xxx

[agapelmh in reply to Lolalamb]

Wow, I'm sorry for everything that you went through. That is a hard recovery. Thank you for your insight. As I look into hearing aids, I will definitely explore that option.

[Lolalamb in reply to agapelmh]

Remember don't be buying them yourself, you should have been referred to audiology, I got them straight away. Although I couldn't wear in my lost hearing ear as I had to have surgery on it to repair the whole, clean out all the infection in the mastoid bone, remove the 3 bones, remove the ear drum as they were badly diseased and replace it with a skin graft and widened the canal so you can imagine it leaked for a few months. I wish you all the best xx

[SunflowerGirl]

Hi Apapelmh,

I'm really sorry to hear about your experience. I hope that your recovery continues to go well.

I've had bacterial meningitis twice. After the first, more severe case, I lost half my hearing in one ear. Similar to your 'good' ear, mostly high frequencies. The other ear was normal. I also developed severe tinnitus in my 'bad' ear. So I have unilateral tinnitus. I was given a single hearing aid, which I only used for a few weeks. When I had my second case of bacterial meningitis 3 years later, they tested my hearing again and both ears were normal! The audiologist was so amazed by the change, he needed to rush into the ENT for confirmation.

So my experience is that the hearing can improve, if not completely repair. This is MY experience. The unilateral tinnitus never changed, it is loud (78 dB), but I live with it and it no longer bother me. This took time, and I understand of course that tinnitus can be very difficult, especially at the beginning.

My biggest regret is not wearing the single hearing aid. Whilst I have perfect hearing in both ears now, because I had 'half' hearing in one ear for so long, my brain adjusted and I am like someone with unilateral hearing. (This is now 10 years since my second case of meningitis). If I place the phone to my bad ear, I can clearly hear and understand the person, but I cant do this for more than a minute or two because the focus is too difficult and I can't concentrate on the words, even though I hear them perfectly.

Because of my experience, I'm wondering if there is any chance that your hearing will also improve? And some way to keep the brain trained like its hearing from both ears during the time of improvement?

Wishing you the very best!