Frustration

[Enegra]

I hope writing about negative experiences is allowed here. In some other community that I frequent I got a comment that "bad stories scare people away". I don't want to just keep faking smiles and pretending everything is fine, while the truth is getting bottled up and threatening to blow up the cap.

I am trying to stay positive to the extent I can. I still have (at least some) hope that the story will have a happy end.

Alas... my implants have taken my life away from me.

Quite contrary to the stories we can read in the Med-El blogs, where everyone just praises the implants and the sound they brought. Hardships, if mentioned at all, usually are related to deafness and not to the implants themselves aside from explaining the learning curve. I find it increasingly difficult to connect with those stories. I would feel more motivated if for a change someone told their story, where they went to the hell and back and managed to achieve success. A little proof that in the darkness there can be still light, in the despair there can be still hope.

I was basically bullied into the implant decision. I had moved countries for the love of my life and started building a new life there. After some years I noticed I was struggling with my hearing more than before, so I wanted to get new hearing aids, as mine were very old by then. The healthcare basically stated that they don't support hearing aids for my hearing loss and if I want to be a productive member of the society, I should get cochlear implants. The last part was apparently not intended by the doctors, but they hired a translator who really uttered these vile words in my face. I had to resist crying and these words haunted me for many months to come.

I got my first implant in 2020, the surgery went alright, but the activation experience was dreadful and the Covid situation blew up right after. Due to that I wasn't getting any fitting sessions for months despite struggling badly. My formerly good ear decided to quit on me in that time. In 2021 I attempted to continue my studies, with hearing performance worse than ever before and was bullied by teachers refusing to understand that. I tried my best to explain that no, it is not an instant cure and at the point of time I couldn't really hear any consonants at all. Apparently that was some really alien concept I was attempting to explain, because the happy stories have people dancing from joy just a month after the activation! [Just some made up example, but most of the stories shared in communities are like that]

I decided to get a second ear, as clearly my first ear wasn't a champion or a good performer at all. The uphill battle was only afflicting me with crippling depression. I managed to mostly whack the depression into submission - not without help, of course - and got the second ear. I thought I had not much to lose, as the hearing there was almost nonexistent anyway... But wrong. Somehow the new implant ended up compressing my facial nerve. Due to the coronavirus situation halting surgeries, I had to wait two months in excruciating pain. I didn't even get appropriate help, such as pain management, in that period due to the virus constricting the healthcare.

I eventually got the revision surgery, it seemed well for a while, but some issues related to the nerve damage remained. The nerve decided to blow up due to insufficient medication and fixing it took away a good few months of my life. Currently I am on medication to suppress the tantrums... Around the time I started getting medication I noticed one day that my hearing became all distorted in both ears. Then it happened again. The clinic was raising brows at that, maps are not supposed to randomly go topsy turvy. I've not found such case in any community I was in either. And it's really difficult to explain to the clinic that I am not making things up, I just suddenly stop hearing things.

Last month I've had constant pain from my revised side, it is getting worse. Even without using the processor. Currently I am in the process of figuring out with the doctors what's going on with it, but it looks like another surgery might be inevitable. They hope that it can be salvaged, but if not then explanting is on the table, as it's useless and only causing pain at this point. I can wear the processor on that side for whopping 15 minutes before the pain flares up enough to make me toss the processor.

My original implant is also giving me some grief and pain issues, although it's not as bad as the second implant. Nobody warned me this could happen. When I asked why, I was told "we thought these complications too rare".

I am jealous when people say they wear their processors from waking up until hitting the pillow. I can't. I have to take breaks or even my left side gets quite painful. On top of that I am trying to cope with the not-much-of-a-champion ear alone and it just had the third case of map dying. I suspect it's related to the nerve pain medication, however I can't get off it now. So rather than having a mature ear with only minor tweaks, I had to sit for an hour and half for just one side and get the map redone from scratch. It's clearly not optimal, but I moved at least one step away from not being able to understand my own mother. Yay me.

I feel more disabled than ever before, spending more time in silence than ever before. I decided that the music from my tinnitus can be quite entertaining, especially if I make peace with it and try not to be annoyed at it. I haven't been able to study at all this year due to chronic pain, and for the same reason I can't work either.

I can't say with a clean conscience that I am not regretting the leap.

I know that my case is exceedingly rare and complicated.

I am happy that other people have better outcomes. I just hope that my voice, too, can be heard.

Perhaps one day I can get my life back?

[Mary Beth]

@Enegra

I am so sorry to read of your difficulties.  This is a friendly group and everyone may share their stories openly without fear of judgment.  It’s one of the reasons HearPeers is my favorite forum.

I will be sending you much positive energy and hope your medical team can sort things out for you very soon.  Please keep us posted.

[Kylie]

I am so sorry this has been your experience.  Even though it's extremely disappointing, it's just as valid and worthy of sharing. I hope that your new mapping continues to improve over time so that you may gain something from this. 

[Enegra]

Thank you for your kind words, @Mary Beth and @Kylie. I will be posting an update once I know something of consequence. July is vacation month in my country and most of the clinic is still on vacation (at one point almost literally everybody was gone, so I couldn't even get an appointment early this month). For now I have a phone call scheduled with a surgeon to discuss the results of scans that by then hopefully should be done and sent to them.

Just an additional difficulty of living in a different region than the hospital doing the implants. Stuff is split between two places with communication issues between each other.

At least nowadays the CI clinic offers urgent fitting appointments again, and apparently "not being able to understand own mother" is a reason that gets one booked.

[Jimit]

Thanks for Writing this @Enegra, We need more people like you to speak out loud on the other side of it too. And I admire Med-El community to be neutral on this forum.

I am sorry about your experience but don't lose hope. Life is much more than just hearing. Pain will always be there one way or another. We all are in the same journey. Hope you recover soon. 

[pdk]

Once you solve the pain problem I hope you will have success. I must tell you I have never had any shortcut in mapping. It always has to go through the full process.

The map for each ear is totally independent so it is indeed very difficult to understand why both processors give the same problem.

[Dianna]

I too appreciate your story here in this forum. I hope truly hope your current medical team can help you! Sending positive energy and prayers.

[Enegra]

Today my SO decided to display the emotional intelligence of a troglodyte and pondered in a conversation: "So if on Friday the CT scan doesn't reveal anything wrong with the implant, they will probably end up removing it".

It didn't improve my mood for sure.

[Mary Beth]

I will be sending you positive energy for your CT and appts.  Please keep us posted. @Enegra

[Dianna]

Hi agnes, so you get the scan this friday? And the troglydite only hinted at what would happen if it shows normal placement?

I am so puzzled (im sure you as well) by the on off you are describing, is it the map program or your sound going off and on?

If its maps "dissapearing" then does your sound get like crazy or shut off?

And it happens to both????

Is the nerve damage by the implanted brain or the array?

I have read papers about having to explant defective arrays but mostly in the early days when the arrays were really stiff, and perforated things....some (very few) rejected the implant like it was a transplant.

I was thinking about going back and finding some of the papers i read last year, my center has been implanting and researching a very long time, there is like overload for me in that stuff. My fav was the surgery assisting machine id like to see if its being used yet.

I am hoping for you something better!!!!!!

Big hugs!

[Enegra]

16 minutes ago, Dianna said:

Hi agnes, so you get the scan this friday? And the troglodyte only hinted at what would happen if it shows normal placement?

Yeah, that's right. There are not many options left to try as far as I know, since nerve pain medication is not mitigating the issues enough, PT only brings temporary relief and the situation only seems to get worse over time rather than better.

18 minutes ago, Dianna said:

I am so puzzled (im sure you as well) by the on off you are describing, is it the map program or your sound going off and on?

If its maps "dissapearing" then does your sound get like crazy or shut off?

And it happens to both????

It happens to both ears and the timing puzzled me. Essentially what happens is that the balance shifts around completely, leaving huge gaps in audibility; last time my left ear was missing lower mid-tones completely (as in, they were not audible at all pretty much), everything was hollow and my speech understanding was down the gutter. Right was garbled and distorted. I didn't bother getting the right ear fixed, as currently I can't wear it anyway, but got the left to mostly usable state. Had to basically redo the map from scratch. It took a long time, so tweaking to fine tune it will need another appointment... or a few. So instead of decent performance of a bilateral user, I have one underwhelming ear that barely lets me get by in quiet situations.

23 minutes ago, Dianna said:

Is the nerve damage by the implanted brain or the array?

The nerve has been damaged when the right side was implanted, the body of the implant was placed awkwardly way too close to my temple and caused bad pressure, which led to nerve compression. At some point I lost my sense of taste, had issues with controlling and feeling half of my face. After the revision surgery, where the implant was moved away to a new spot, most of the issues went away. However, the nerve is still damaged (my neurologist isn't surprised, the nerve was being squashed for two months, that's enough to piss it off) and I can't put away the nerve pain medication. Last time I tried it didn't end up well. Recently the nerve pain is getting stronger and also constant pain in the implant area appeared. There's also really bad tension, feels like half of my head was wrapped around by a really tight rubber band and getting the brains squeezed out. But only half.

My left side has only intermittent pain, itching. Gets more painful/burning when it's hot and when I wear the processor for a longer time. So currently I am not wearing it more than few hours at a time.

Quite a setback from my hearing aids that I wore pretty much from getting up to bedtime. Breaks happened, but that was usually because of a migraine or something like that. So that's what I meant in my original post by saying I feel more disabled than before.

My hospital has been doing research about cochlear implants for at least twenty years, but apparently they haven't encountered the issues I am dealing with before. At least certainly not all of them combined.

[Dianna]

I am so sorry. I did and still do have some mouth issues, apparently the antibiotic gave me something yukky to my mouth, taste changes, also but my issues are like a bothersome fly compared to yours, i hope your team strives to fix it, you need to live comfortably not on meds.

I took the medel learning course on the ear, those nerves are soooo close. Also saw some in the research papers. My doc spent time in germany way back in the day and brought two implants back in a briefcase i think in the eighties. Their research is pretty cool. University of iowa, bruce gantz. 

3 days til friday!

[Enegra]

I had a phone call about the results of the CT scan, but alas there were no abnormalities in the picture. So nothing that would be an obvious culprit, making this pain idiopathic. My clinic has not had such a case before and they are quite puzzled by it. As far as I heard, it hasn't happened in the country either. So they are going to look for solutions, but also will put me in the queue for explantation in case we can't fix it in other ways. So still in limbo, pain management is not working great and there are more questions than answers.

I will need to get some mapping appointments to get my left side optimised, because that's all I am gonna have for the foreseeable future it seems. Right now the performance is really underwhelming.

I'm also a bit disappointed in the support from Med-El. The only rep in the country is on a leave, his auto-response message doesn't tell how long, so I can't even get any response to my inquiry whether Med-El has data about similar cases.

[Mary Beth]

@Enegra

I am so sorry to read this.  It must be so frustrating.  Maybe @MED-EL Moderator can connect you with someone?

[Dianna]

I too am saddened agnes, i was hoping the scan would show something to "fix" without you having to be in pain.  Hopefully med el and your team can do something. Im hoping so

[John F]

@EnegraDefinetely feel for you.  Have you considered maybe a rep in the home country vs the current?  They may have more presence there…maybe, hopefully?  
 

It’s always good to hear both sides of the coin.  Too often people blindly become cheerleaders for various countries and anything that doesn’t follow the “Amg this is so great” mantra gets stomped on by those same cheerleaders.  It’s not all sunshine and roses.  
 

Folks don’t often magically be able to hear everything at activation often like.  (Truly frustrating reads honestly) Even now, quite honestly, I have not fully embraced my implant since I’ve relied so much on the hearing aid.  Doesn’t help the nonstop plagues keep interfering with trying to get back into the swing of things.  Much too exhausted to be able to focus that much these day.

 

Will be crossing toes and fingers that @MED-EL Moderator can help.  Maybe even warrants a trip to the HQs for the super professionals to help.  Dunno.  ❤️

[Jimit]

Sorry to hear it @Enegra, I am just puzzled on how there is only single representative they have for a country and that too on leaves. 

Definitely want to hear more on this from @MED-EL Moderator. Looks like they really need to work on their support and service. If this is the case in Europe I just can't imagine how it is here in India.

I definitely like this forum, but what's the point if it can't be used in the need like this.

[Enegra]

46 minutes ago, John F said:

Definetely feel for you.  Have you considered maybe a rep in the home country vs the current?  They may have more presence there…maybe, hopefully?  

In my home country there is no official Med-El presence at all, just some third party distributor selling their products. It is that way in a fair few European countries. Which isn't great for the users.

7 minutes ago, Jimit said:

I am just puzzled on how there is only single representative they have for a country and that too on leaves.

Small population in the country, not a whole lot of people needing implants and for those generally most of the things are taken care by their hospitals. So guess they didn't feel like hiring more people was necessary. But then the one goes on vacation or gets sick and there's no support...

[Jimit]

Yeah, that is understandable but the third party who is selling the products or the hospital who is dealing with Med-El should be able to reach out to the Med-El team and get timely response in the time of need.

I am also connected to the third party distributor here and they are linked to the hospital where I have been implanted so it is the same scenario here too. And if they can't then there is a big concern.

I just hope @MED-EL Moderatorcan get the things clear for us.

[MED-EL Moderator Gordana]

Hi Agnes, thank you for sharing your story with us. We have sent you a private message to learn more about your case and get you in touch with the right person.

Kind regards,
Gordana

[Enegra]

Thank you, Gordana! I responded to the private message now.

[Dianna]

Yay! I am really bad on geography, how close is finland to germany or usa?

[Enegra]

On 8/7/2022 at 9:54 PM, Dianna said:

Yay! I am really bad on geography, how close is finland to germany or usa?

Uhh, really far from the USA. The shortest air travel distance appears to be about 7844 kilometres, which equals 4,874 miles. The distance to Germany varies whether you choose land or air travel. Land is about two thousands of kilometres. Air would cut that by about 500.

@Mary Beth@M Dodge@Dianna You requested updates. Well, the situation is a sinking ship with a puzzle which holes to fix to keep the thing afloat. A positive outcome of one of my recent days at the ER is that they had a quite diligent doctor there, who read most of my recent medical history and she spotted that a radiologist left new comments on the CT picture, that were not yet evaluated by the clinic. The doctor from the local hospital contacted the clinic and they've been re-evaluating that scan plus a couple new ones and essentially there is "something that doesn't belong in there". The best picture that they can get is just showing a suspicious shadow, so they don't know. Anyway, a surgery is inevitable, I will be put on the urgent queue now (still no ETA) and they basically will need to get rid of whatever that is and hope it solves the pain; plus they are not dismissing the possibility of finding more surprises in there.

[Dianna]

Whoa, scary for sure, i am sorry this is taking so long to find the source of your pain Agnes, now that something has been found it can hopefully be fixed!!

Yeah i know finland is very far from us. 💘 

Sending good vibes!

Edited August 17, 2022 by Dianna
Typo

[Mary Beth]

@Enegra

As sad as that sounds, no one wants a suspicious something in their cochlea, I am hoping this may solve your pain.  Will they attempt to reimplant depending on what they find or will reimplant not be considered at this time?

I appreciate the update.  I have been thinking of you and sending positive energy your way.  Please keep us updated.