I have a Cochlear Implant & would like to spread awareness on them, would that interest LTT? (Brain Tumor Made Me Deaf In one Ear.)

[TrollFaceTheMan]

 Hello so I have followed LTT since they first became LTT. Like many people on here I love tech. I build and fix computers but also deal with making custom electronics, 3d printing and a ton of other techy stuff. I used to do youtube videos (38k subs) on some of it and hope to again soon. But my life kinda took a crash in the last few years starting with a really bad, emotionally abusive relationship, then losing the place me and my Elderly Dad lived at as the landlord lost all his properties and decided he needed to move into the place we were renting from him. And in the middle of it I suddenly went deaf in my right ear which later it was found out that I had a sizable, rare brain Tumor called an acoustic neuroma.

 It's a slow growing thankfully non cancerous tumor that grows on the hearing nerve/vestibular system (The organs in the ear that controls balance.) It is in close proximity to the Brain Stem and Facial nerve too. I had no idea I had this tumor for many years until one morning I woke up and suddenly the room was spinning, I couldn't control my eyes as they kept drifting off to the right side and it was like that my ear was stuffy and I couldn't hear out of it. It was the weirdest thing as I fell asleep just two hours before and was fine and then just suddenly deaf and not able to walk. The doctor I seen later when the condition didn't improve said it's likely the tumor just finally got big enough to cause blood flow to be cut off to my inner ear and basically caused a stroke. Suddenly, severely and irreversibly damaging that part of my ear.

 It is a long story that I would be happy to tell though here unprompted probably isn't the place. But I was slated to never hear out of that ear again because of that damage done and the size of the tumor already made (originally) surgery that didn't completely destroy my Cochlea (Hearing Nerve) impossible to do. That is significant as though I could never naturally hear again from the damage a cochlear implant (Via the cochlea) could allow me to hear via artificial electrical stimulation from a electrode inserted into he ear that bypassed all the damaged parts. So basically I was screwed...

 In what was a sorta absurd situation I got sick with an ear infection (In my good ear) right before my surgery and had to be hospitalized. At the hospital a doctor seen me about my ear and recommended my to Michigan Ear Institute for a follow up for the infection and about my tumor. He told me there was a new experimental surgery that they were doing there to remove my type of tumor and do a cochlear implant at the same time which amazingly meant that I could potentially hear again. Honestly it was hard to get my hopes up but I took a gamble.

 There was so many challenges that happened along the way including a belief that my tumor was too big and the damage too much for me to get an implant but Michigan Ear Institute made it happen. They were completely amazing and managed to not only completely remove the tumor with no damage to my facial nerve (The main complication which could leave half my face paralyzed) but also install the cochlear and have it end up working. Not only working but apparently I have been one of the best taking canidents they have had so far. Everything went pretty much the best it could in a horrible situation. Part a blessing if you believe in that thing based on the crazy circumstances that lead up top the surgery. And massive part for the amazing professionals in the medical field that were there for me.

 The surgery involved of course removing the tumor, a cochlear implant but also a Labyrinthectomy where they completely removed the Balance Layberenth (Vestibular System) in the affected ear which post surgery was quite a trip. Because of the lack of signaling to my brain from the removed organ it caused not only for my balance to get suddenly much worse again and loss of eye control after years of adjusting, but also a indescribable feeling like my body was split down the middle and was falling in two separate directions. That is something I'll tell you what...

  I had to do pysical therapy to be able to walk again and see right again but apparently that also went great as I was able to get out of the hospital in a couple days instead of a week or more that it usually takes. Again this was definitely in part of some awesome nurses at the hospital that were helping me walk and do therapy pretty much as much as I wanted.

 Things were looking up but the Cochlear couldn't be switched on for a couple of months so even with it installed I couldn't know if it would work at all which my surgeon was doubtful based on previous cases (But still did it on my request which is amazing.)

 The first 3 months were BAD. I had constant neck and back spasms post surgery that made it almost impossible to sleep. Walking was difficult, the headaches and migraines were unbearable. I would wake up constantly feeling like I was falling or flipping which is probably a big part of the neck and back issues as I was always tense... It was again as I said... BAD...

 Then shortly after surgery another tragedy happened which is my dog Ceaser, my best friend of almost 16 years went from being fine to passing away in less than 24 hours. He was very important for my already poor mental health and that just really set my on an even worse road.

 I already wasn't able to sleep more than a couple to a few hours a night (Not an exaggeration) from the headaches, back and neck spasms, balance issues and such... But I also developed some type of panic disorder where I would wake up constantly in night soaked in sweat, breathing hard. Apparently people around me said I would sometimes scream or yell myself awake. I don't know what the dreams were but it made my already terrible sleep worse and made the issues with the pain take on a whole new level. And everything feed into itself. Night anxiety bleed into day, and eventually I couldn't even manage to watch videos, play games or do anything really without a constant dreadful feeling of being on the edge of a breakdown or Anxiety or Panic attack.

 Not to get too far of track though. At this point I have been doing much better. I started on an anxiety medication which also is used to treat chronic nerve pain and amazingly after years of pain my head and neck are doing amazingly better and though I am groggy a lot the medication has seemed to of gotten my anxiety and panic attacks mainly under control.

 Everything that happened in the last couple years is pretty much why I stopped youtube, I just need to try and manage myself right now.

 Which brings up why I wanted to ask you about the Cochlear thing and if you are interested in talking about it/Making a video on it. I, before I quite Youtube, really REALLY wanted to make series of videos on my cochlear implant, what it is like hearing with it. How it progresses with time. Answer FAQs on it and such for people wanting to get one themselves. Hopefully to alleviate fears for some, and answer questions for others. Along with help spread awareness of options like my surgery... Because if not for my complete chance run in with that doctor in that hospital I would of went with a different surgery and been deaf the rest of my life... There was no fixing the damage done had I gone a different route.  Maybe some other people can be spared that too.

 And because of my unique position of being able to hear okay in one ear and have a cochlear in the next and also being able to do sound editing I can make approximations no one else can of what the cochlear implant sounds like to me. One of which I made and will attach below of what it sounded like when it was FIRST turned on. After getting used to it longer though it is much more natural sounding now because of the brain basically decoding the electrical signals... It's weird but your brain is hearing naturally in one ear and a different language in the other which it then autonomously converts over to making sense...

 I would like to make the updated sound file soon and like I said show people what it may sound like. Additionally I was made curious by your recent videos on the sound blocker whether it would affect cochlear patients which would of course be horrible. And interested in the CT scanner for the External unit which may be cool and not something you could normally do.

 I also have these cool Xray images that show the internal cochlear implant (What is under my skin) and also my twisted vertebrae...

 Anyways, sorry for the rant. I tend to always overwrite or talk when I mean to be short. Hopefully that doesn't take away from what the message I am hoping to spread.

 I appreciate you all reading whether from LTT or just people on the forum. Thank you. I will try and answer any questions anyone has on Cochlears too if you all like :)

 

[TrollFaceTheMan]

FAQ:

 -What is a Cochlear Implant: Best to view a site like this (https://www.nidcd.nih.gov/health/cochlear-implants) for that info. But the short of it is that it's an electrode that is inserted into the Cochlea (Snail Shell Shaped Organ in the ear used to convert information from the middle ear into sound.) It stimulates different parts of the cochlea nerve with electrical pulses which creates information the brain can convert into sound.

 There are two parts. An internal part implanted under the scalp and an external processing unit that attaches with a magnet. It has the microphone and battery which powers the internal device and sends information through coils. Much like wireless charging on a phone but with data. You need the external unit attached and powered to be able to hear anything.

 -Can you feel it (The implanted unit): As in inside my head? Then no. If you mean can I feel it externally with my hand? Then yes. There is a slight bump when the magnet and coil are that get the signal from the processor unit and power the electrode. They remove some tissue like muscle in that area when installing to lesson the bump. It is between the Skull and skin.

 -Can you sleep with it on: Yes, though it's not recommended as the external processor is only attached with a magnet and can fall off easy as well as have the wire potentially damaged (Which is replaceable by you, but expensive.) I would like to sleep with it on as the tinnitus I have is much worse when the unit is off. On a side note the bump where it is can be a bit uncomfortable to sleep on itself, especially on a hard surface. But fine after awhile on pillows.

 -Is it waterproof: The external processor is not. But they do have silicone covers for it that apparently allow you to swim and such with them on. However the unit (At least my model) is water resistant so light rain, sweat and such shouldn't hurt it. However any time you need to get wet like shower or swim you can just take the external unit off and the internal unit is completely protected by your skin. You of course won't be able to hear in that ear when it is off.

 -Can you get MRIs: Yes, but at reduced power. There is a magnet inside of my head where the external unit attaches to. That will get slightly warm and vibrate during MRIs. Also the area around the magnet will be distorted and unreadable on the images.

 -Can you go through metal detectors and airport security: Metal detectors I am not sure. Supposedly they will not trigger but I haven't been able to try yet. In terms of airport security, I had no issues with them. Don't even need to take off the external unit to be scanned. Also don't even need to tell security you are wearing them. Though it doesn't hurt to.

 -Does it help with tinnitus: For me it absolutely does. If 10 is without the cochlear on and my tinnitus being bad then usually a 2 or 3 would be when the unit is switched on.

 It is believed a lot of tinnitus is caused by lack of information from your ear or parts of it (Failing hearing in parts of the spectrum.) And in the absence of this information you brain starts hearing white noise and amplifies it. Similar to seeing stuff that is not there in the dark. It has also been compared to turning up a radio really loud with no station. You'll just hear static and white noise.

 So when the cochlear is on it provides some type of actual signal for the brain to hear and focus on instead of white noise and thereby the tinnitus (from lack of information to the brain at least) gets much better or can even stop altogether. My Audiologists says too that it is very common for it to help significantly or fix tinnitus when on.

 Also interestingly enough my audiologist said too that even for people that the implant doesn't work for (They can't hear with the unit) it can still help there tinnitus when worn which is interesting.

  -How long is battery life: So the battery life will mater a lot depending on any number of factors. Including how updated your processor and electrodes are. How well your hearing nerve is which can depend on how much power you need to have pumped into the electrodes. Electrode placement in the hearing nerve. Resistance of the tissue on the electrode (Higher resistance means more power loss ergo more power needed to hear at the same level.) And so forth.

 In my specific case my batteries with the Nucleus 7 last about 28 to 32 hours. I don't run it dry though I take it off when the low battery beeps occur which seem to be at maybe 5%. Or sooner if I remember. (As they are lithium batteries it is best to only charge them up to about 90% and discharge no lower than 15% if you can.)

 More commonly what I do is charge mine back up to full (Can't really tell 90% because there is no display on the charger, and the app battery reading are useless...) after about 16h of use. After about 2 years they are still going strong. However it will depend a lot on different factors so everyone is different.

 In my case my electrode placement was good, my resistances low, and my hearing nerve good enough that I don't need very high power so keep that all in mind.

  -Can the unit be upgraded: Kinda. So the thing is from my understanding the processor which is the external unit can be upgraded as long as the surgically implanted coil in your hearing nerve is compatible. Sometimes these upgrades can have improvements in sound quality as stuff advances.

 However if you have an older implanted Coil/Electrode you might be screwed in terms of upgradability without going through another surgery (Which insurance likely won't cover as it would be frivolous if your implant is still working.) The reason is that a lot of the higher hearing fidelity comes from the electrodes implanted into the cochlea having more stimulating segments in it.

 The more individual areas you can stimulate in the cochlea the more hearing fidelity you can achieve. I believe mine is 20 or 22 segments but there are ones being tested with as high as 32 segments from what I read. And again the more segments the more you can hear exponentially. Almost like coding a 2 bit system have 4 combinations 00, 01, 11, 10. But a 4 bit (0000-1111) system has 16 possible combinations. While a 16bit system can have a massive 65,535 combinations. And 32 bit system can have 4,294,967,296 combinations.

 So imagine that in terms of the electrodes on the cochlea and combinations of possible simulation leading to different sounds. Having an electrode with 32 sections with 32 states (On or off) can theoretically produce many hundreds of thousand or even millions of additional useful (As all are not going to be useful) combinations to replicate sound over a 16 electrode implant.

 So upgrading the processor might give you some benefit with older electrodes as software and external hardware improves. But there will always be sadly a hard limit to the sounds fidelity based on the electrode you had implanted at the time of your surgery unless you undergo another surgery to replace it with a never model.

 The software on the processor however can be upgraded by your audiologist as new ones come out.

 To be typed up still questions:

 -Does the unit have an implanted battery/how is it powered: No, unlike some other medical devices that have batteries installed in them that need to be occasionally surgically replaced like Pace Makers (Unit that stimulates the heart to keep normal sinus rhythm.) or Vagal Nerve Simulators (Unit used to stimulate the vagal nerve usually to prevent seizures.) The internal electrode is completely powered wirelessly via a coil on the external processor unit. It's similiar to how wireless charging for phone work except this sends power and data through it.


-Does it help with your balance:
-Are static Shocks/Tesla Coils and so forth dangerous to the unit:
-Do you get interference sounds picked up by the unit:

 -What are the batteries lifespan and replacement cost:
-What does music sound like:

-Any Benefits:
-Can you use Headphones still:
-Can you hear Binaurally still and use that for sound positioning:

 -Does the sound quality get better with time:

 Feel free to ask any questions if you have them and I'll try and add as I go.

[Tan3l6]

Very interesting to hear how hearing with the cochlear implant sounds like.

[TrollFaceTheMan]

3 minutes ago, Tan3l6 said:

Very interesting to hear how hearing with the cochlear implant sounds like.

 Thank you. Again it sounds more natural after two years now. I hope to make an updated version soon.

[TylerD321]

Hearing impaired gang (I have had hearing aids since I was 4)

[Skiiwee29]

I wear double hearing aids as well thanks to lots of ear infections as a kid and Helicopters in the Army. 

[TrollFaceTheMan]

Just now, TylerD321 said:

Hearing impaired gang (I have had hearing aids since I was 4)

 I appreciate to cordial welcome! What type if you don't mind me asking?

[TrollFaceTheMan]

Just now, Skiiwee29 said:

I wear double hearing aids as well thanks to lots of ear infections as a kid and Helicopters in the Army. 

 That really sucks. That's what I though happened at first when I went deaf was just a infection or stuffy ear because I have had so many issue with drainage and stuff too. Speaking of the helicopters I flew for the first time a couple weeks ago, the pain was unbearable at first. My ears couldn't equalized pressure right then suddenly my good one felt a sharp pain then felt better but stuff sounded rattly for a couple of days. I think it might of ruptured then healed?

 Now that I am typing this though I realize you are probably talking more on the noise than the pressure change?

[Skiiwee29]

5 minutes ago, TrollFaceTheMan said:

 That really sucks. That's what I though happened at first when I went deaf was just a infection or stuffy ear because I have had so many issue with drainage and stuff too. Speaking of the helicopters I flew for the first time a couple weeks ago, the pain was unbearable at first. My ears couldn't equalized pressure right then suddenly my good one felt a sharp pain then felt better but stuff sounded rattly for a couple of days. I think it might of ruptured then healed?

 Now that I am typing this though I realize you are probably talking more on the noise than the pressure change?

Yea, noise. Have really bad tinitus. The pressure change is normal and usually balances itself out, but sometimes you have to hold your breath and push to pop your ears to release the pressure

 

[PDifolco]

40 minutes ago, Tan3l6 said:

Very interesting to hear how hearing with the cochlear implant sounds like.

Well said

[TrollFaceTheMan]

1 minute ago, Skiiwee29 said:

Yea, noise. Have really bad tinitus. The pressure change is normal and usually balances itself out, but sometimes you have to hold your breath and push to pop your ears to release the pressure

 

 Tinnitus is HORRIBLE. It was honestly one of the worst things after going deaf in the one ear. Sometimes the ringing at night was so unbearable I couldn't sleep. Especially when your blood pressure is high and you can hear it just pounding in rhythm to it. I also would have sometimes loud bangs or sounding like screeching static that would jar me at times.

 The more subtle ones was a dripping or popping sound which gave me false hope at first that my ear was just clogged and would get better. The Cochler for me helps drastically with the tinnitus while on. And the surgery made it much better when off thankfully.

 I don't know if you are already part of it, but my Dad has tinnitus from the army too and they'll pay you disabilities for it. Might be worth looking into if you need it. Helped him out.

 And yeah the counter pressure thing scuba divers use. Supposed to open the eustachian tubes. I did do that on the plane a few times which gave me some relief but I was worried of overdoing it and potentially hurting my ears. Return flight I chewed gum the whole time. Though upon landing I still couldn't hear right for about an hour XD

 (Kinda freaky when you already have hearing problems.)

[Skiiwee29]

7 minutes ago, TrollFaceTheMan said:

 I don't know if you are already part of it, but my Dad has tinnitus from the army too and they'll pay you disabilities for it. Might be worth looking into if you need it. Helped him out.

 

They don't give out disability anymore for hearing loss, at least not when I got out in 2010. My hearing aids are 100% covered through the VA so I don't have to worry about that aspect. 

[TrollFaceTheMan]

Just now, Skiiwee29 said:

They don't give out disability anymore for hearing loss, at least not when I got out in 2010. My hearing aids are 100% covered through the VA so I don't have to worry about that aspect. 

 I see, that sucks. My dad got his two or 3 years ago just. But he was also in around Vietnam (Though worked as a mechanic in the states.) He actually was injured several other ways while in the military including his back really badly and his knee but they said there was no record of this and refused his claims. Whats really ridiculous is they didn't even have record of him being in the military in the first place. He luckily kept all of his papers and was able to prove that he was. It is horrible how bad vets can often be treated. But that is off topic. Anyways sorry that happened, really sucks.

[TylerD321]

1 hour ago, TrollFaceTheMan said:

 I appreciate to cordial welcome! What type if you don't mind me asking?

I started out with phonak behind the ear hearing aids, then I moved to phonak ITE hearing aids. I currently have Resound ITE hearing aids. Here is my last hearing test I had when I was 17 haha.

 

[TrollFaceTheMan]

4 hours ago, TylerD321 said:

I started out with phonak behind the ear hearing aids, then I moved to phonak ITE hearing aids. I currently have Resound ITE hearing aids. Here is my last hearing test I had when I was 17 haha.

 

 What are ITE hearing aids? Does that mean in the ear?

[TylerD321]

3 hours ago, TrollFaceTheMan said:

 What are ITE hearing aids? Does that mean in the ear?

ITE is in the ear, yes. Here is a good website that shows the difference between most common hearing aid types.

 

https://www.starkey.com/hearing-aids/styles/in-the-ear

 

Edit: I have the resound LT7ITE-DW-HP hearing aids, here is a pdf with tech specs if you are curious. The image is pretty close to how mine look.

Resound Tech Specs.pdf

Edited April 29 by TylerD321
Added PDF

[abit-sean]

16 hours ago, Skiiwee29 said:

I wear double hearing aids as well thanks to lots of ear infections as a kid and Helicopters in the Army. 

Same here apart from the helicopters.

[BoomerDutch]

Woo cochlair implant gang

 

Did you know that some cochlair implants has Bluetooth so nobody hears it but himself music or anything and no one knows

[abit-sean]

1 hour ago, BoomerDutch said:

Woo cochlair implant gang

 

Did you know that some cochlair implants has Bluetooth so nobody hears it but himself music or anything and no one knows

I do that with my hearing aids at work. It's a nice feature to have.

[TylerD321]

12 minutes ago, abit-sean said:

I do that with my hearing aids at work. It's a nice feature to have.

Same here, my hearing aids have an app to where I can change a few modes and stuff like that also. On iphone, if I tap the lock button 3 times I can change listening modes, volume, enable various white noise, or even turn on live listen. Live listen turns my hearing aid's microphone off and uses my phone as a microphone!

[abit-sean]

1 hour ago, TylerD321 said:

Same here, my hearing aids have an app to where I can change a few modes and stuff like that also. On iphone, if I tap the lock button 3 times I can change listening modes, volume, enable various white noise, or even turn on live listen. Live listen turns my hearing aid's microphone off and uses my phone as a microphone!

Got an app for that as well. Love the mute function, comes in handy in really loud environments or if I want to ignore the family.

[TrollFaceTheMan]

On 4/29/2024 at 3:54 AM, TylerD321 said:

ITE is in the ear, yes. Here is a good website that shows the difference between most common hearing aid types.

 

https://www.starkey.com/hearing-aids/styles/in-the-ear

 

Edit: I have the resound LT7ITE-DW-HP hearing aids, here is a pdf with tech specs if you are curious. The image is pretty close to how mine look.

Resound Tech Specs.pdfUnavailable

 Thanks for the source I will have a look

 

On 4/29/2024 at 1:37 PM, BoomerDutch said:

Woo cochlair implant gang

 

Did you know that some cochlair implants has Bluetooth so nobody hears it but himself music or anything and no one knows

Actually yes, I have one that does XD

 Though for me it never seems loud enough to let me focus on it unless I am in a very quite environment. Supposedly you get better at it with practice. Though I rarely use it.

 Actually funny enough the most common time I do use it is to watch Tech Quickie or LTT in a car. The lack of much or any background music usually makes it much easier to hear than many videos that have it way too loud which as I am sure you know, causes things to sound super garbled on the implant.

 

On 4/29/2024 at 4:53 PM, abit-sean said:

Got an app for that as well. Love the mute function, comes in handy in really loud environments or if I want to ignore the family.

 I actually like the forward focus setting for mine a lot, it makes a difference in noisy environments as you said. Especially when having a conversation with someone in front of you.

[BoomerDutch]

28 minutes ago, TrollFaceTheMan said:

Though for me it never seems loud enough to let me focus on it unless I am in a very quite environment. Supposedly you get better at it with practice. Though I rarely use it.

I'd believe it has to do with your implant sound configuration since that also had effect in changes.

 

But takes time it's worth it!

 

It is highly recommended to listen to music it gives you great mood boost!

 

28 minutes ago, TrollFaceTheMan said:

Actually funny enough the most common time I do use it is to watch Tech Quickie or LTT in a car. The lack of much or any background music usually makes it much easier to hear than many videos that have it way too loud which as I am sure you know, causes things to sound super garbled on the implant.

In rare cases with wrong volume setting yeah I'd have same issues however I'm glad that's not every video and subtitles is sometimes there.

[TrollFaceTheMan]

Added more to the FAQ if you have any questions please feel free to ask them

[TylerD321]

1 hour ago, TrollFaceTheMan said:

Added more to the FAQ if you have any questions please feel free to ask them

You know, I wish LTT would explore how headphones work with hearing aids and other hearing technology. I have a problem where some headphones make my hearing aids squeal or the over the ear headphones speakers touch my hearing aids and put pressure.

 

Pretty much all headphones sound the same to me haha