Frustration

[Dianna]

On 8/27/2022 at 5:33 PM, Enegra said:

The pain is not in the coil area, but rather below it, around the edge of the internal. The magnet is already very weak, so i am not sure if I can add any padding without it just falling off (it already falls off it I have sharp head turns or bounce). I do use it somewhat regularly, just lacking the motivation to do so when I don't actually need the hearing. I've even started going outside in deaf mode, something that I've been avoiding earlier. Not sure how to deal with this. In the past I've had trauma about the processors and getting anxiety attacks, but this is different. Sort of given up feeling.

Hi agnes, good morning, i was googling "mysterious tissue on ci" apparently, at least in china, there are investigations and past issues. Rare but happens. "Foreign body reaction" apparently the "why" factor is less known but "how" is either infection based or simply body reaction based. In most cases reimplantation does work. Im not saying anything like "hey this is it" but i cant stop thinkin bout you so studying. It takes time for this to happen.  Obviously your case is not comparable, but maybe your case will help the implant scientists solve this love 💘 😉 and hope from us in the us

[Serena Metzler]

Wow that is so crazy

[Enegra]

48 minutes ago, Dianna said:

Hi agnes, good morning, i was googling "mysterious tissue on ci" apparently, at least in china, there are investigations and past issues. Rare but happens. "Foreign body reaction" apparently the "why" factor is less known but "how" is either infection based or simply body reaction based. In most cases reimplantation does work. Im not saying anything like "hey this is it" but i cant stop thinkin bout you so studying. It takes time for this to happen.  Obviously your case is not comparable, but maybe your case will help the implant scientists solve this love 💘 😉 and hope from us in the us

Hey Dianna! I've already investigated this topic at the beginning of the month; typically in the cases of idiopatic pain it's generally biofilm infection that is really difficult to catch any symptoms of in imaging or blood tests. Though my case is starting to look more like neglected mastoiditis.

These papers in my opinion have the most value in the topic: doi: 10.1097/MAO.0000000000002696 and https://doi.org/10.1002/lary.25272 , the second one is freely available. In general there is not a whole lot of research about it, these kinds of complications are rare and not every clinic is reporting complications. Research is generally a thing done by university hospitals, but CI surgeries have gotten common enough that even smaller places are doing them. My hospital is actually an university hospital, but even though they had the most research in the topic of CIs in the country, they didn't have such a complex case before.

[Dianna]

28 minutes ago, Enegra said:

Hey Dianna! I've already investigated this topic at the beginning of the month; typically in the cases of idiopatic pain it's generally biofilm infection that is really difficult to catch any symptoms of in imaging or blood tests. Though my case is starting to look more like neglected mastoiditis.

These papers in my opinion have the most value in the topic: doi: 10.1097/MAO.0000000000002696 and https://doi.org/10.1002/lary.25272 , the second one is freely available. In general there is not a whole lot of research about it, these kinds of complications are rare and not every clinic is reporting complications. Research is generally a thing done by university hospitals, but CI surgeries have gotten common enough that even smaller places are doing them. My hospital is actually an university hospital, but even though they had the most research in the topic of CIs in the country, they didn't have such a complex case before.

That article is interesting. I was thinking the implant can get a biofilm not detected but mess with processor sound.  You are the unluckiest! I hope you dont mind being a lab warrior! I knew you would have researched. Ok heres one for you. I dug out my old oticon pair i had from 2014 to 2020. Oticon alta pro. I looked up reviews, and alot shared my complaint of too much feedback. Before they completely broke, my left ha would have a dance party with cicada here! Even ppl near could hear it! And when the chorus died down id hear a big long beeeeeep at the end. I couldnt stop wearing it at work id be deaf! So i would groan to myself every time a cicada would start his "chorus"

I hope oticon more platform is better!

[Enegra]

32 minutes ago, Dianna said:

That article is interesting. I was thinking the implant can get a biofilm not detected but mess with processor sound.  You are the unluckiest! I hope you dont mind being a lab warrior! I knew you would have researched. Ok heres one for you. I dug out my old oticon pair i had from 2014 to 2020. Oticon alta pro. I looked up reviews, and alot shared my complaint of too much feedback. Before they completely broke, my left ha would have a dance party with cicada here! Even ppl near could hear it! And when the chorus died down id hear a big long beeeeeep at the end. I couldnt stop wearing it at work id be deaf! So i would groan to myself every time a cicada would start his "chorus"

I hope oticon more platform is better!

8 years is a really long time in terms of hearing aids development; my HA in 2020 was a lot better than the one I got in 2014 and I even had a previous-gen, not the latest (Thanks to Phonak for temporarily ditching UP range back then). So I would be fairly confident that Oticon fixed whatever issues they had back then.

As for the feedback issue; is there a possibility that the receiver in the canal was not fitting properly and that caused some sounds to leak? There is a possibility of having the receiver encased in a normal ear mould for that reason, then it should be much more soundproof. I know some people with dome/ric type hearing aid complained about feedback a lot, especially if close contact to hearing aid was involved.

As to why cicada specificially triggered the feedback... I don't know. All I know amplification of high pitched sounds by a hearing aid is somewhat limited. Maybe the settings you had by the audiologist then were exceeding the hearing aid's actual capability and it was causing it anti-feedback mechanisms to fail completely. Just an educated guess though. I am not familiar with that hearing aid model. I know some people using other Oticon ranges and they've been rather happy.

[Dianna]

10 minutes ago, Enegra said:

8 years is a really long time in terms of hearing aids development; my HA in 2020 was a lot better than the one I got in 2014 and I even had a previous-gen, not the latest (Thanks to Phonak for temporarily ditching UP range back then). So I would be fairly confident that Oticon fixed whatever issues they had back then.

As for the feedback issue; is there a possibility that the receiver in the canal was not fitting properly and that caused some sounds to leak? There is a possibility of having the receiver encased in a normal ear mould for that reason, then it should be much more soundproof. I know some people with dome/ric type hearing aid complained about feedback a lot, especially if close contact to hearing aid was involved.

As to why cicada specificially triggered the feedback... I don't know. All I know maplification of high pitched sounds by hearing aid is somewhat limited. Maybe the settings you had by the audiologist then were exceeding the hearing aid's actual capability and it was causing it anti-feedback mechanisms to fail completely. Just an educated guess though. I am not familiar with that hearing aid model. I know some people using other Oticon ranges and they've been rather happy.

I think you guessed it about that aid being maxed out. That is the ear i had implanted. Yah lots of good reviews on the more so im happy testing it plus the aid comes in pink! Just realized my right side has long hair probably wont be seen.

[Dianna]

Mornin agnes, how are you feeling today? Thinking of you today.

The "new" oticon is similar to my old one, all the mechanics are similar but with much more technology. Hearing lots but includes some feedback and hair brushing noise, but like with the ci it needs training...trying to be patient

Take ❤ my friend

[Enegra]

Hey Dianna, thank you for your thoughts!

I've been feeling a bit off the last few days, definitely suffering from drug withdrawal symptoms. Now that the worst of the pain is gone (there's still some residual pain, which is not unexpected, for now I am monitoring it) I didn't want to be on gabapentin any longer than necessary, because its side effects were quite crippling me. Alas, I had to reduce it rather harshly because I was running out of it, so now my body has been acting super confused and failing badly at self-regulation.

Hearing aids unfortunately always will have some feedback, best that can be done is reducing the amount of it. The hair noise on filters should be less noticeable over time when your brain gets used to the sound and tunes it out. Fun fact, last week randomly I had some hair stuck under my coil that was making noise, I consulted my spouse and he was hearing that hair too. Luckily after another wash it decided to flatten itself again and I haven't heard the noises since. Just normal hair rustling and swishing around.

 

[M Dodge]

Enegra, I been thinking about you a lot and hope things are changing for the good. So, with the implant removed were the doctors able to lessen the nerve compression or is that in your other ear? Is the plan moving forward to eventually implant a new device once you are completely healed up? Please know that no matter what happens, there's a lot of people rooting for you, praying for you, and sending you massive amounts of positive energy. Please don't withdraw and feel you are alone in this ordeal. It's easy to do but try to be positive.  

[Jimit]

@Enegra Hope the recovery is going good. You are a fighter, keep your focus on the future. Remember that future belongs to the brave and you are the bravest I have ever came across in my life. Sending you all the positivity I can from here.

[M Dodge]

@Enegra I wanted to know how you are doing. Have you been able stop taking the gabapentin? I've been really busy the last few weeks and haven't had much time to communicate with the forum. My Oticon HA started to malfunction and had to be sent in for repairs. So, for about three weeks I had to revert to my old HA that use the little rubber domes. I was so thankful when my good HA came back repaired and worked like a champ. Are you healing from your surgery fine? I healed up pretty quick but was tender for a while. Is your other CI working fine now or still getting mapped? I recently had some minor adjustments done to my CI and a new program added. My implant and HA are work together pretty well. Please let me know how you are. Thank you.  

[Enegra]

I've been recovering, but it is a very long and slow process. Definitely not typical healing speed, but I guess after three of those surgeries in under a year I have a lot of scar tissue, which is complicating things.

The nerve pain is mostly gone, so I was able to drop Gabapentin and the withdrawal effects mostly wore out by now. I am still tapering off the second drug. I've been very careful with it, because the face has been acting up sometimes and it is difficult to tell if it's because of reducing the drugs or the other problems I have. There's pressure build up inside the ear and it's not equalizing. For that reason I am still unable to do any exercise and I am getting a bit of cabin fever. I've contacted the ENT about this, but the consensus was basically to get in touch again if it is still a problem a couple of months later. The whole ex-implant site, ear area and the side of my neck are very sore and tense. Basically scar tissue that is throwing a hissy fit. It gets the worst at night because the added weight is making it scream and kill my sleep. Every night. I don't remember when was the last time I got proper rest without waking several times. It's affecting my back too and there's not much I can do to counter it, because I get nauseous and dizzy as soon as I start working out. I am getting physical therapy for the head and back, but it's going to take a while before there's any improvement.

The old implant sort of works. It's neither great nor terrible. I got the map tweaked a little, but at the same time heard a comment "maybe we can't make it any better". Well, that's not very reassuring. In quiet 1:1 situations I do okay and that's pretty much it. Forget hearing in noise or with multiple people involved. When attending virtual meetings or watching TV I am just reading the captions.

What's the worst of everything is that my surgeon grew cold feet about the reimplantation. I am really not happy with the news at all.

 

[Dianna]

Hi agnes, i came in here to ask how you are doing....to find your post....what does cold feet mean no reimplantation? Can that change after you heal? 

Im glad you were able to get off one med....im sorry you are having pain. Sending e hugs 💘 

Di

[M Dodge]

@EnegraThank you for responding back. It sounds like, on top of everything else your balance is a little off. I experienced my balance being affected but it did improve over time. I'm still very careful when walking. For your neck soreness you could try a heat pack to lessen the tension and soreness. My wife goes through bouts of not sleeping due to chronic back pain and found it easier sometimes to sleep in the rocker/recliner. She also uses an over-the-counter TENS unit and heat packs. She uses prescription pain meds sparingly. For the working implant is it possible to get a second opinion on your mapping. A different doctor may approach your mapping differently. Your right, it's not very reassuring to hear a comment like "maybe we can't make it any better." It sounds like an inexperienced person in mapping made that off the cuff remark. Seems odd.

I think it's too early to discuss reimplantation because your mind and body are still healing. Your condition could greatly improve over time. Your brain is still trying to wrap itself around what has taken place.

Please understand that these are my thoughts and opinions meant to help you. Anyone that has went through CI surgery experiences things a little different. What you are going through is on the extreme end of the scale. I want you to have hope and happiness, to have the best quality of life. You are not alone in your struggle. Everyone on this forum is pulling for you and wish you the very best outcome.

Mark

 

 

 

[Dianna]

Well said mark ❣ 

[Enegra]

@M Dodge  @Dianna Thank you for your wishes and thoughts. I appreciate them.

I don't think there's anything wrong with my balance per se. I can for example make airplane or tree poses easily or walk in the dark. If I stumble it's generally because I am distracted and not paying attention to my feet. It only occurs when the pressure builds up enough that I get dizzy, but there are also other symptoms of nerve irritation and barotrauma. I've been taking steroids for a while, it seems a bit better but the ear still doesn't equalize. I am really hoping that it will go away. Apparently there's swelling in my middle ear, but no signs of inflammation, apparently the swelling was already present and noted during the surgery. Probably the pressure from the fluids messed things up. The doctors are hoping it can go back to normal, but they don't have better answers for now. I was on a plane yesterday and it was really not a fun experience.

I am not able to get a second opinion on the mapping unless I use the nuclear option for transferring all the matters to another city, but then I'd have to stick with that option for good, and I have no idea if they would do any better in there. The person who made that remark was supposedly one of the more experienced people in programming Med-El processors in Finland. It certainly doesn't help that the hospital insists on treating me like a late-deafened patient and refuses to believe that I was born deaf. I had my medical documentation in another country and apparently speaking four languages and not having a significant deaf accent is the "proof' that I used to hear normally. Very funny.

Yesterday I actually found proof on a paper from 1994 that the left ear, the one that I have the implant in, was nearly as dead as it is now. Which probably explains why I am not great at understanding speech with it. The sound does not feel natural. It appears distant and detached, a bit like a movie with voice-over. I can still differentiate between voices and sounds, the tones seem about right, but the feeling of something being artificial doesn't get better no matter what. It wasn't the case when I was bilateral, the sides were blending really well giving immersive sound.

What is happening to my head and back is that the scar tissue is very tense, like concrete and hurts a lot. It's not just the incision area, but almost half of the head. The tension is causing my neck and back to lock up on that side too. I have a very good physical therapist who is helping me manage this, but I can't afford more frequent appointments, even if I could that would only reduce the intensity of the symptoms. The scar tissue needs to be broken down and that takes time.

About the reimplantation, the surgeons don't want the story to repeat. I am not sure if they ever found out what went wrong during the original surgery. I am also getting the feeling that they are tired of dealing with my case. I can sympathise with them, but I went into the surgery being told that they will reimplant in six months, then they changed their mind and now claim that they are going to wait a year before evaluating if the reimplantation is possible at all. It's not the first time they have recanted their statements either, but this time they made me actually mad.

[Dianna]

I can relate to being mad, but perhaps they need to see the healing process thru, hoping your process goes well. 

Our winter is starting, im sad to see all things wild and wonderful are starting their resting period. We all need rest to heal 💘 .

 

[Serena Metzler]

wow 😲 😲 😲 😲 😲 😲 😲 😲 😲 😲 😲

[Dianna]

Hey agnes, how are you doing l been thinking about you! Do you feel like you are healing? 💘 😻 💜 💛 💚 🧡 

[Serena Metzler]

23 hours ago, Serena Metzler said:

wow 😲 😲 😲 😲 😲 😲 😲 😲 😲 😲 😲

I'm praying for you and your health, I hope 🤞 🤞 🤞 🤞 🤞 🤞 🤞 🤞 🤞 🤞 🤞 you, you will get through this and Get well soon as possible

[Enegra]

It's been a long time since I last posted. I needed to take the break and just focus on myself. Getting the implant removed wasn't the only thing that went wrong last year. Long story short, I will never be the same again.

The performance of the left ear is still lacking, it has been really difficult to navigate the world like that. I did manage to get it improved somewhat, but I think I am just hitting the limits of what the auditory nerve can do after having mostly no input past 1kHz for 25 years.

I am going to see the surgeon regarding my right ear again. I am not sure what to expect at the appointment, because they have skipped pre-op appointments before. I already had a discussion in the winter about the re-implantation and got a green light.

They still don't know why there was inflammation in the mastoid and why the complications happened. For that reason they are apprehensive, but I had pretty detailed imaging done with CBCT and there were no contraindications for the surgery visible in the picture. Complications may or may not happen and nobody can tell. Silver lining is that since the mastoid bone is mostly gone, I can't get inflammation in the same place.

[Mary Beth]

@Enegra

Thank you for the update.  I have been thinking of you.  I hope things improve soon.

[Jimit]

@Enegra I wish and seriously hope things will get better from this point forward. 🙏

[Dianna]

Me too, been thinking about you agnes good luck on your appointment ❤️ 

[Enegra]

I had the appointment and eh, there are so many things that can go wrong, specific to my case. It's significantly more complex than a typical re-implantation surgery. I still want to go through with the surgery, because without any hearing on one side I am not getting the performance I need. I am not sure what outcome to expect, as things haven't exactly gone well before.