Separate names with a comma.
Discussion in 'Your Living Room' started by Kevinb003, Dec 5, 2019.
This is fantastic, Kevin! Thanks for keeping us informed about your progress.
That's great, glad to hear you are coming along so well.
Thanks, Joe, that has not been discussed as so far the good ear is affected only with cochlear hydrops. If it did develop into endolymphatic hydrops and the vertigo returned, I would not hesitate to get another laby. The first one gave me five wonderful, symptom-free years until the hearing on the other side was affected. I refuse to live with that madness again if it returns.
Kevin great news and you are always so optimistic! Great attitude makes a big difference in ones success in my opinion. I agree 100 percent with your statement regarding another laby if the time comes. Thank you for giving updates.
Thanks for this thread Kevin!
Kevin - I am new to the forum, but I want to thank you for sharing your journey with SSD and CI. You and I have the same neuro apparently. I've been dealing with bilateral Meniere's since 1999, and Dr. Hahn has been taking care of me since 2010. Dr. K. King is my audiologist out of that same group at Medical City. I have severe-to-profound SNHL with 0% speech (unaided) in my right ear. I had gent in that ear years ago to finally put a stop to the vertigo, but my hearing loss was severe before the gent. My left ear has had normal hearing between episodes until more recently. I'm starting to have more frequent and more significant episodes in my left ear and have been doing more and more intratympanic shots. The positive effect of the shots just doesn't want to last very long anymore, so it is starting to look like my "good ear" is going down. I'm starting to get to that line where I just don't want to keep doing the shots over and over again; I've had four series in the last six months. Given the trend that seems to be happening with my "good" left ear, the option of a CI on my "bad" right ear has come up a few times in my more recent appointments. I've heard stories of SSD patients who have a hard time adjusting to the CI, because their "normal" hearing is just so different than what they hear in the CI. Do you feel like the different audio streams from your hearing ear and your CI are starting to resolve to a common sound?
Hey, @beks and welcome!
This is hard to answer as things have changed so much since the pandemic, but I will try my best. My wife has been working at home since March and it’s just so much more noise in my daily routine that I have found it very hard to train with my CI like I used to during the work day (I always work from home when not traveling for work). That said, with the nice weather we’ve been having in DFW, I have been able to escape to the back patio during lunch for training lately.
Make no mistake, it’s challenging. My “good ear” (also the left) has been much better lately, which is another reason for letting my training slip. I know I can do it, but it’s just much harder with all the distraction around.
As far as your question, there is no commonality in the audio streams at the moment as my left ear is doing so well. I need to start wearing an ear plug to cut that out as much as possible and focus on the implant. Voices still don’t sound normal through it, but sound where there was none before is amazing! It takes a lot of getting used to because this is something the brain has NEVER experienced before. To be honest, all of the training I do is streaming directly from my phone or iPad with music and audio books or input from the tv, so with the exception of the tv, my left ear is never hearing what the implanted ear is hearing. When just wearing the processor with no streamed input, environmental sounds and general white noise are louder than voices so it’s a challenge there also getting the volume just right so that you can hear speech, but not be blown away by a bag of chips being opened.
it’s really great to hear from another patient of Dr. Hahn. He is an amazing surgeon and advocate. I have to ask, have you tried antivirals? He will prescribe if you ask. I have found the combination of acyclovir, lysine, olive leaf extract and the B5 & B6 regimen work best for me. Also Betahistine, which Dr. Hahn can prescribe as well.
if you get the CI, you will have another audiologist that specializes in implants.
I’m sorry things are going poorly with your good ear at the moment. Hang in and be proactive. I will never regret getting the implant because I know that no matter what happens to my “good ear”, I WILL be able to hear with the implant.
Feel free to PM me any time if you have questions. I’d
suggest meeting for coffee sometime under normal circumstances, but in these challenging times, that’s easier said than done!
Stay safe and hang in!
Kevin - Thank you for the response. Yes, Dr. Hahn is wonderful. I saw a different neuro for the first 11 years and felt like I was just a case study for him. Dr. Hahn definitely approaches my treatment like we are partners in this, which helps me feel much more in control of this thing.
Again, I appreciate your insights very much. It is very helpful to follow your experience with the CI, because you and I have similar scenarios. Your comment about knowing you will be able to hear regardless of the path of your left ear is something that really hits the mark for me. My husband and I talk alot lately about the impact of the "fear factor" and whether having a CI would help me feel confident that I would not be fully deaf. When I lost most of my hearing in my right ear, I think it was alot "easier" to handle, because I still had completely normal hearing in my left ear. Now, with my left ear starting to escalate, the losses are harder to accept. The fear is definitely a much bigger specter now.
It is good to hear your left ear is doing better lately. I had an IT shot last week in my left after everything around 1000 and below dropped to 50-60dB. It was very strange to be at Medical City with the hospital so quiet. I am back up to normal range at 1000 (yay!), but the lower frequencies only came up to ~40dB. I have a typical "peak" right now, and we are trying to decide if I want to do more shots or just let it try to stabilize with the lower frequency loss. I am definitely getting to the point of feeling like I'm fighting a losing battle with all the steroid shots in the left ear.
Do you have more mapping appointments coming up? How's music in the CI? Do you also have a HA on the left ear or no?
Hi again, beks. I do have a hearing aid as I used to use the CROS system. I hardly ever wear it because, as you know, all it does is amplify sound and that is definitely not always better with this disease. When adjusting to the CI, it’s best to have that as your primary source of audio input, therefore users are encouraged to not wear hearing aids as much as possible. That’s where the streaming is so important for people like us because it takes your other ear out of the equation while adjusting to the new way of hearing.
I had a mapping appointment scheduled in April, but that was cancelled by the Hearing Center due to COVID-19. I guess they are seeing patients now on a limited basis, but I’m not sure I feel comfortable just yet going down there. I don’t think my need is as urgent as yours at the moment to merit a visit. I’m interested to have another hearing test with the implant, but I’d rather see the trend of the COVID cases decreasing for a while as opposed to increasing as they are now.
I’m glad the dex injections are helping. I don’t think they ever did anything to help me. It’s so frustrating how differently this condition affects different people. And I totally get your concerns about the possibility of becoming completely deaf. As a musician, that took me a long, long time to get over. Dr. Hahn helped immensely with that and was very insistent when he told me there were options and that I wouldn’t have to live in silence.
Now, music with the CI...that’s an interesting thing. You definitely will need to listen to music you are familiar with and it’s even more helpful if you know the lyrics. I’m not sure what your tastes are, but I have found music from the 60s and 70s sounds the best because the recording technology was not digital so it’s warmer to listen to and identify instruments if that makes sense. Percussive instruments shine with the CI—snare drums especially. I have a play list I created just for rehab and I’ve gotten to the point where I don’t have to look at the phone to identify the song playing. That doesn’t sound all that impressive to people I know with normal hearing, but for me it means a lot. I can’t play my guitars yet and have them sound good with the implant though, but it will come eventually.
Hope I was able to help. I know this monster sucks, but I honestly never knew how strong I was until going through the loss of half of my hearing, the loss of half of my balance system, learning how to walk again, and learning how to hear again in a completely different way.
It sounds like you have great support at home and that is very helpful. You got this! Your life won’t be any worse because of this or any better because of this. It will just be, well, different. And different is what we choose to make of it!
Take care and as always, feel free to reach out any time.