Cochlear Implant & SSD

[pester123]

Hi everyone.

 

5 months ago I was involved in very serious head collision whilst playing soccer which left me in a coma for 4 days and sustaining a life threatening traumatic brain injury. My skull fractures have damaged my left inner ear which has left me completely deaf that side as well as the roaring tinnitus and balance issues many people suffer.

 

I have been given the go ahead for a cochlear implant in my left ear and was wondering if anyone here has received a CI for SSD?

 

I would love to have a chat with someone who could share their experience with me. My research so far has been very positive and I have only come across one recipitant who is struggling to adapt to their new hearing.

 

I look forward to hearing from you.

 

James

[One1side]

Hey there,

 

I have received CI for S.S.D. Chances are that you won't have as much of a struggle as some with the CI because your hearing loss is considered to be recent. The big issue for people like myself who take longer to adjust to the CI is that they have had their hearing loss for a long period of time. Mine is even more difficult because I have had the hearing loss from a young age. A few things to know: You will need to get a couple of shots for pneumonial meningitis before surgery, it helps to have a program to practice with after activation such as angel sound or the sound and way beyond program, practice will make a difference after activation and there is a gap of time after surgery before you are "activated" in order for your body to recover from surgery (about a month typically). The activation date is when you will first experience sound with the device. Different people take different times to adjust to the device, but the sooner you receive the device from when you lost the hearing the less time it will take to adjust.

 

Sincerely,

 

Winden

[kenstee]

Hi James,

I had a recent CI for SSD. I lost my right side hearing a few years ago after a bout with pneumonia where I ran a very high fever and had ear infections as well. I was activated on Oct 30. All has gone very well and I'm so glad I did it. I also have tinnitus on my bad side. This condition is not rare when you have lost your hearing. The CI has lessened it when my device is on but not totally eliminated it. Once I was activated voices, etc in the implanted side sounded very genuine and not at all odd or distorted - as is sometimes the case. The surgery itself was a bit more involved than the experiences of many others. I had bad dizziness and vertigo for the first 3 weeks and pain for 2 which was relived by pain meds. If you can - spend the first night after surgery in the hospital. The first 24 hours can be rough and uncomfortable. What else do you want to know? Be prepared to receive a mountain load of equipment and devices when you go for your initial activation. It takes a few days to learn about it all but the MedEl manuals and vids are pretty good. The ability to get one of your senses back is quite a miracle if you ask me. But, do keep your expectations realistic. It will not be as good as your original hearing was. In addition, I lost most of the small amount of residual hearing I had in that ear as a result of the procedure. They try hard to maintain it but it doesn't always work out. It didn't in my case. That said, you will be very happy with the final results though, very happy. Best of luck! Things will be fine...

[pester123]

Hi guys,

 

Thanks for both taking the time to get back to me.

 

It is decision time for me this week as I have two options. I can wait 12 months and get the procedure done for free on medical insurance or fund it myself now which is going to cost roughly $40,000 AUD / $35,000 US. It is not cash I exactly have lying around so it is a huge decision for me, although I am aware the sooner I get it done the sooner my brain will take to adapt to the device - hopefully!

 

Sorry to hear you had a bit of a rough ride post surgery Ken, thankfully it sounds as if things are moving in the right direction for you now though. I guess the big question I keep asking myself is what will the hearing be like in the future? I am expecting a very tinny, robotic sound to be honest - although you said yours did not seem too distorted - but how good can it get with putting in a lot of hard work and practice? I just do not know what to expect although I am not expecting anywhere near perfect hearing in that ear ever again. I wonder if your experience in having genuine sounding voices was due to having some residual hearing in that ear?

 

I love music and loud places and enjoying both of these things is something I can not do at the moment and if having a CI lets me enjoy these things again I am a very lucky man! Indeed - being able to restore a sense of the human body is truly amazing!

 

Another decision is going to be choosing my device from either Cochlear or Med-El? My specialist says both companies are very good but at the moment is currently favoring Cochlear. If anyone could share their experiences with either it would also be appreciated.

 

Thanks again

 

James P

 

 

 

[TonyTH]

Hey James,

 

I am considering Med-EL, too, for my other ear. I have an AB on my left and it is still wonderful device. I am pretty sure Med-EL is the way to go over Cochlear because they have the longer electrode array for complete cochlear coverage to hear all the frequencies. And their magnet does not needing to remove for MRI which is a good thing.

 

Can someone here shares their experiences as how the longer electrode array have benefit over the traditional electrode..(?) Also how is FineHearing strategy is like?  I am eager to know more. Thank you!

[kenstee]

All I can do is post my own perspective on which brand to choose. I explored all the options and MedEl made the most sense for me...

 

1. You can get an MRI up to 1.5T WITHOUT having the implanted magnet surgically removed. This was huge for me as I've got rods and screws in my shoulder and neck. Who knows when I might need an MRI if there is a problem? Or if I get another injury/medical issue. To me this lifted ME way above their competition as of right now.

 

2. ME offers the only off the ear processor in the Rondo. It is an amazing piece of technology and works great. More comfortable than having something on my ear.

 

3. I liked their customer service better. I contacted each by email and poised the same questions and issues. ME's reps were the fastest to reply with comprehensive, insightful; answers. I felt they just cared more. It gave me a feeling for what I could expect if I needed and post-implantation support - which I have needed. I haven't been disappointed.

 

4. They appeared to have a more sophisticated array of electrodes. At least it looked so. Who knows?

 

5. In the USA they were offering a promotion for a FREE next generation external audio processor when ut is released. I really liked how they were taking care of their customers when some new technology was around the corner. "Choose a MED-EL Cochlear Implant System between

now and December 31, 2014, and receive a voucher for a free audio processor when new technology becomes available"

 

So, that's my story. It worked for me.

 

James. that's a real bitch with the finances. Al of the companies have departments who work with you to get coverage. Maybe that's worth a try. I cant say to spend that much when a 12 month wait essentially gives you the procedure for free. If you can deal with your condition for that period I'd wait. But, that's me. I expected a tinny. robotic sound too. IT ISN'T!! Sounds perfectly normal. Now, I did have a bit of residual hearing BUT most all of that was knocked out during the operation despite efforts to preserve it. So, on the right side they tell me after testing that I have no functional hearing.  I can't say these very favorable results will happen to you too. BUT...if you do nothing NOTHING will ever improve. My philosophy was it was worth a shot. If it didn't work so be it but at least I tried. Given the very high success rate I was comfortable spinning the dice on this one. And I'm glad I did. There are no guarantees in life. I think this whole procedure is roughest on those who never had any hearing and are dealing with a whole new set of unfamiliar stimuli. That doesn't describe either of us. So, I think the whole thing will be easier than you think. I really don't think you'll need any special therapy, etc. I don't. Just using it all the time gets me used to it. The moment of truth was nasty though ...my heart was beating fast when they first hooked me up....but...all was great..voices sounded natural. Nothing weird.

 

Thong: I really can't comment on these more technical aspects. It's part technology and part marketing hype. All the manufacturers say theirs is the best and provide evidence as to why this is true. So, who knows? If you read above you'll see why I went with ME. That said, I'm sure ALL of the systems work well and each has legions of supporters and users. So, they must all deliver good results.

 

Feel free to shoot me any more questions.....

 

Cheers......Ken

[Ivana Marinac]

 

Hi guys,

 

Thanks for both taking the time to get back to me.

 

It is decision time for me this week as I have two options. I can wait 12 months and get the procedure done for free on medical insurance or fund it myself now which is going to cost roughly $40,000 AUD / $35,000 US. It is not cash I exactly have lying around so it is a huge decision for me, although I am aware the sooner I get it done the sooner my brain will take to adapt to the device - hopefully!

 

Sorry to hear you had a bit of a rough ride post surgery Ken, thankfully it sounds as if things are moving in the right direction for you now though. I guess the big question I keep asking myself is what will the hearing be like in the future? I am expecting a very tinny, robotic sound to be honest - although you said yours did not seem too distorted - but how good can it get with putting in a lot of hard work and practice? I just do not know what to expect although I am not expecting anywhere near perfect hearing in that ear ever again. I wonder if your experience in having genuine sounding voices was due to having some residual hearing in that ear?

 

I love music and loud places and enjoying both of these things is something I can not do at the moment and if having a CI lets me enjoy these things again I am a very lucky man! Indeed - being able to restore a sense of the human body is truly amazing!

 

Another decision is going to be choosing my device from either Cochlear or Med-El? My specialist says both companies are very good but at the moment is currently favoring Cochlear. If anyone could share their experiences with either it would also be appreciated.

 

Thanks again

 

James P

 

 

 

 

Hello James,

 

having in mind that I am not CI recipient I choose not to write about exact experience but I can offer you few information which I have gathered while I have been present here.

At first, welcome to this Forum - HearPeers. We have here few people who have very good knowledge about cochlear implantation as they were also implanted at some point. After some time, they gathered a precious experience. Speaking of myself I am ENT resident but at same time impklanted with some other implant, Bonebridge, as I have another type of hearing loss. First person is certainly John, second one is Matt Laxton who actually lives in Sydney and can be very good advisor. He was implanted with Med-El so he can actually explain to you experience with this device.

Secondly, having one deaf ear actually puts you into the position that you have to be aware how loud music and noise can damage hearing cells on your other ear. So, please be aware that even after the implantation you should be more carefull although your first ear is not damaged by noise than by direct trauma.

Also, the participants on this Forum are not exclusive regarding specific device (we are just recipient of Med-El implants and are gathered here to share experiences). This link was very informative although you have to know that some changes has happened this year so all three CI manufacturer made progress regarding technical specifications. http://tinyurl.com/nlvedyj

Regarding your opinion how your CI might sound, kt is not exactly like that. Actually at first it can be like that, but with time as your brain will relearn how to listen it will sound more natural.

 

If there is anything we can explain, please ask - do not hesitate. It's a big step, but it is much easier when you do it fully informed.

[pester123]

The longer electrode array with Med-El is definitely leaning me towards them at the moment Thong. As far am I am aware I believe the extra length on the electrode means it reaching to the tip of the cochlear and resulting in better pitch as the tip of the cochlear controls mid pitch sounds - so I have been told?

 

I believe both Cochlear and Med-El's electrodes are both ok for MRI's up to 1.5T and Med-El's new electrode due to be released is up to 3.0T.

 

Ken - the Rondo is also leaning me to the Med-El and likewise I have had a very good experience with their customer service over the passed few days. I do believe Cochlear is about to release their version of the Rondo which has dual microphones - as an experienced CI user does the dual microphones improve sound localization? Med-El are due to release their Sonnet audio processor soon which also has dual microphones so I presume their new version of the Rondo with dual microphones will be out at some point in 2015.

 

I know which ever company I choose I will be in good hands but hopefully I can find enough information to back up my choice. The technology will be forever changing and I am sure each company will overtake the other from time to time - I guess we are very lucky that this kind of competition is out there to keep pushing the boundaries of technology.

 

I think the electrode is probably a good place to make my decision as that will be with me for a very long time and both companies will be developing new processors that over take each other every year or so!

 

Also thankyou for the link Ivana I really do appreciate everyone's response.

 

JP

[Ivana Marinac]

 

The longer electrode array with Med-El is definitely leaning me towards them at the moment Thong. As far am I am aware I believe the extra length on the electrode means it reaching to the tip of the cochlear and resulting in better pitch as the tip of the cochlear controls mid pitch sounds - so I have been told?

 

James,

 

this is theory of tonotopic organization - mid frequencies are not exactly  at the tip. Look for yourself at the picture: