New user - new implant

[christi1963]

Hi All,

Just wanted to introduce myself as a new member.  I was diagnosed with Meniere's disease and have had fairly rapid hearing loss bilaterally within 3-4 years- esp. on my right, with no capacity to understand speech (distorted, can hear some sounds- don't know my audiogram readings off the top of my head.) Additionally , I was troubled by frequent and severe vertigo attacks.  I was implanted with a CI on Dec 20th 2016 with the hopes of restoring some hearing, thereby allowing my neurotologist to treat my left ear with gentamycin (trans-tympanic) to help alleviate the vertigo.  This will likely diminish the hearing on my left so I needed to restore some hearing on the right. Can't wait to get started...

My biggest concern right now is ...it has been 8 days.  I expected to feel so much better by now.  Instead, I feel tormented by crazy tinnitis (waaaaay worse than previously noted!) and pressure, pain, and dizziness that seems to be getting worse! I can't taste anything (well, it is a weird metallic, card board sensation instead.) If I do anything like walk my dog or any housework, I get pounding pressure and pain, and dizziness, so I keep having to lay around- which is tough because it is harder to distract myself.  My head/ear feels almost like it is empty (yeah, I know, hard to explain, but it is so WEIRD feeling!)    

 After reading many of your posts, I see that this is a pretty typical experience, so I actually feel much better reading your stories.  I am an I.C.U. nurse who has not been employed due to disability since all this hit, and would love to get back to work and life in a more involved manner.  I live alone and having hearing and balance issues has been very troubling - I hope this is a new chapter in getting some quality of life back! Thanks for listening and for sharing your individual experiences- you never know who can benefit!  Trying to stay positive and live in the present! 

[Mary Beth]

Hi Christie and welcome!  I hope 2017 brings you a lot of WOW listening moments.

 

I was fortunate both times and had very easy recoveries.  It may be helpful to let your CI surgeon know of your symptoms in case a different med may help.

 

When is your activation?  Which part of the US do you live in?

 

My CI center is New York Eye and Ear in New York City.

 

Wishing you the best

Mary Beth 

[christi1963]

Hi Mary Beth,

I am not taking any medication for any symptoms - and frankly, any medication I have to control vertigo has never been too helpful anyway other than to control nausea and vomiting from attack.  Is there a medication to lessen tinnitis? Because I would love some about now!   I have a follow up with my surgeon on Jan 5th and activation on the 13th.  I am in the Boston area.  Thanks for the kind words - I am really looking forward to hearing better. I guess I was so eager, I didn't stop and consider these weird and uncomfortable sensations were possible.  He/they did mention the potential risks etc, but really down-played the recovery, so I guess I was expecting to be feeling normal after a couple days (which now seems sort of unrealistic!)  I will just try to be patient and wait to see him next week, unless something actually gets worse. It sounds from reading others posts, my experience is somewhat common, though less desirable! I think when audiologist activates it, there at least will be some overriding distraction from the sensations and noises. 

Thanks for your suggestion though

Kind Regards- Christi

 

[Mary Beth]

Many people experience a significant reduction in tinnitus after activation or after obtaining a stable MAP.  I hope you experience that. Smile.

[christi1963]

yes, that is what i am reading here- and good to know because I started to panic a bit with how I was feeling. I was tormented already with the tinnitis i had before - I guess I have to keep my sights on the hearing improvement (no pun intended!) and I guess know that we do have an amazing ability to cope with new physical and mental states!

[Kara of Canada]

Hi welcome! I have been activated for a year and let me tell you it's a true miracle. I had a some what tramatic surgery which made my recovery about three weeks before the pain went away. The tinnitus was crazy before activation. 24/7! It got way better after activation. This journey is not for the faint of heart. It requires lots of rehab and patience. We call to the three Ps. Patience perseverance and practice. It's much worth it tin the end that's for sure! I went from 12% speech comp to 46! It's a wild ride!! 

[Valentin]

Welcome christi1963. Great site where you are to know experiences and experimented users on CI.

This is a journey, and each one live his own experience..

 

[Megan L.]

Hi Christi! Welcome to the group ?

My journey started October 18th when I got implanted and activation was November 11th. So pretty recent. My surgery was smooth and my recovery was rough. I got really sick from anesthesia and dizziness. To be 100% honest, I didn't feel great until 3 weeks after. I highly recommend you take it easy and limit bending over as that is what caused my pressure/pulling/dizzy feeling. 

I had tinnitus all the time really bad in my implanted ear (left)  and now it's pretty much gone. It's rare now when it comes to visit. 

The best is yet to come!! ? As Kara said, it's a wild ride! Cheers to 2017 and hearing better ???

[christi1963]

Thanks to you all who have shared and greeted me.  To be honest, as stupid as it sounds, i did very little internet reading, other than scholarly journals, as i did not want to freak myself out.  As an ICU surgical nurse for 25 years, I have seen outcomes that don't work out so well (with any surgery) and rarely if ever see the outcomes of successful surgeries or disease outcomes. Complications from any number of reasons, and I didn't want to fear complications that I wouldn't necessarily experience.  Consequently, I was really surprised by the level of discomfort, dizziness and crazy tinnitis - and it has been only post-op day 9!  My surgeon and his staff definitely downplayed these things, esp. the discomfort.  We are all different and subjectively experience things differently but I finally started to panic a bit !  I decided to see what others have experienced - and I feel SOOOO much better knowing others had these things and they eventually went away or improved.  Most importantly reiterating the joy of hearing speech or participating in life again without such handicap.

I can get used to all food tasting like salty cardboard if I could regain hearing speech, going to the movies or out with a group and not feel like i am sitting with an astronaut helmet, floating in orbit while those around me chit chat... 

Megan L., thanks for the advice on taking it easy.  I know i was doing too much after a few days, but I just didn't want to sit around.  This is when I started feeling really bad - and my kids started yelling at me to stop pushing it.  So I am taking it easy ( I am trying to listen to my body - ya know the same instructions I have been telling others for years,lol!)

I am very much looking forward to the future - Cheers to a great 2017 for all of us!

[Mary Beth]

It gets better.  Just hang in there and let others spoil you a bit.  After activation you will be busy training your brain.  Smile.

 

Many people experience temporary taste disturbances.  For the vast majority of people, taste does return to normal after some time.  So it is realistic to hope for hearing others in a group and also enjoying the food!  Smile.

[christi1963]

Thanks Mary Beth, esp. the reminder to smile!!!  I don't really have the situation to let others spoil me, and feel I have already inconvenienced my grown children enough- they work a lot and I feel guilty being a burden (and feel too young to need such intensive support.).  I have chickens and other animals that need care- and after my daughter flew home, I was back at it. But, yes, I will save as much energy and hope for activation and brain training. Being a type A, I will be probably overdoing my training exercises as well ! But I have begun to understand the importance of allowing yourself to heal, to rely on others, and to apply the 3 P's! Patience has always been a weak point for me ! I guess I will get to work on this!!

[Mary Beth]

You will have no choice but to embrace patience as this is a journey, an amazing life-changing journey.  It was to my benefit that I loved aural rehab.  I did lots of aural rehab and still do, just different kinds now more focused on pitch discrimination in music.  I found that it was important to listen to my brain.  When it was overwhelmed and tired, I took a break.  

I read this analogy in a book on neural plasticity and it helped me visualize what was happening in my brain:

 

After a new snowfall, the first sled run you take on a hill goes rather slowly.  As you take repeated runs down the same track, the snow gets packed and you speed up.  Repeated successful auditory inputs work the same way in our brains.  

 

I hope you feel better soon.  Counting down til activation is exciting.  Just remember that whatever things sound like at activation is not an indication of your future success with your implant.  I did not understand any speech at either activation and I function great with both implants.  It is only your starting point.

 

Wishing you the best.

[christi1963]

Wow- really love the analogy. Makes a lot of sense when one considers both neuroplasticity as well as the noncompensatory neural pathways we develop in response to any new stimuli or information. Yes, patience is indeed nonnegotiable - and it is also helpful to know that my experience with activation and beginning this journey is not necessarily an indication of future success.  I think much of the grief and anxiety I cause myself is jumping into the future with  "what ifs..."  Thanks for listening and sharing your experience.

I truly appreciate it!

 

[Mary Beth]

We have all been there and can relate to your anxiety.  For the first time in my life, audiology appointments are exciting.  Smile.  Go figure!  It really is an amazing, and very individual, journey.  No journey is without its bumps.  Just wait until the fun begins!  It is mind blowing.

[christi1963]

Ya seriously, going for those audiology appts were so upsetting - like failing a big test repeatedly... even though I already knew the trouble I was having.  I was wondering- however off topic, why does one doctor use one brand versus another? Are they unique to one's hearing loss or anatomy or different insurances?  I received a Cochlear Nucleus (Kanso) and it seems people have one of the other 2 brands. ) I keep hearing people with AB or MED-EL, but not the Cochlear Kanso.  I am not trying to jump ahead but I didn't really ask why the use this one. Any one have any thoughts?

[Mary Beth]

This is a Med-El forum so on this forum you will find primarily Med-El CI users.  People who use other brands are welcome too and can share in general CI discussions and aural rehab, etc.  You will not find help here with your processor.  However you will find help here on aural rehab and life with CIs.  If you are looking for support on your specific tech, search for a Cochlear board.

 

I was given the choice between all three brands and chose Med-El.  My CI center works with all three companies.

[christi1963]

Huh! Ok, that good to know... I wasn't ware of that! I guess that explains why I didn't see much about it! Thanks for all your help.

 

[Mary Beth]

You are welcome.

[MED-EL Moderator]

Hi Christi, thanks for reaching out to our community on HearPeers. As Mary Beth mentioned, HearPeers is a MED-EL forum with primarily MED-EL users, however we welcome all hearing implant users like yourself looking for support or advice in their hearing journey! If a MED-EL recipient was in a similar situation as you, we would strongly recommend for them to talk with their hearing specialist and medical specialist. These specialists will be able to offer support and strategies in dealing with the tinnitus and vertigo. Hope this helps! Leigh

[christi1963]

Thanks - I know much of what I have read has helped me already!  I was struggling with vertigo and tinnitis from my Meniere's diagnosis, and unfortunately I haven't found anything offered by many specialists I have seen to be all that helpful in controlling either.  But...I do find that distraction, rest and sometimes meds are needed to just get me through.  I just was not prepared for the severity of either post-op ( and I think I may have simply not wanted to think about it either!) I just wanted to concentrate on the activation and training ahead.  I do see my surgeon this week and maybe there is something not yet tried.  It seems to be improving a wee bit.  I can say that the Cochlear forum is not very robust- hope this has no relationship to its quality as an implant!

[hadron]

Hi Christi. For most people when the processor is turned on at activation the electrical stimulation masks your tinnitus. Hopefully this will occur for you. Your audiologist can also create a program to reduce your tinnitus after activation if it still is bothering you. Good luck.

[christi1963]

Thank you for that life line!! Can't wait for the 13th (my big day!) but I will look forward to this as a potential assist- it has improved somewhat ( I am now 13 days out). Still sometimes just plain freaky, like horror movie freaky... 

[hadron]

All 3 companies make great products. You will enjoy hearing with your N6 or Kanso processor.

Below is a link to articles written by women with bilateral Meniere's whom received cochlear implants.

http://cochlearimplanthelp.com/journey/needing-a-cochlear-implant/menieres/

 

 

[christi1963]

Thanks for the link and the support. Meniere's disease really is quite horrible and has profoundly affected my ability to function and feel confident with activities of daily living (driving, hiking etc.) and recreation.  When I met with a neurotologist a couple years ago, she casually mentioned "it's ok, you can just get cochlear implants" as I sat there crying.  So I am glad to have this opportunity and also glad to hear all 3 products are high quality. I'm wondering if there was a reason I got this one- I was not given a choice.  But all I care about is that it works!  

[MED-EL Moderator]

Hi Christi, I can understand your frustration and I hope it all goes well for you on activation day on the 13th. If you haven't come across it already, the MED-EL Blog has some great content, including rehabilitation tips and tricks and recipient stories. These can be helpful for anyone with a hearing implant, regardless of the brand. You can check it out here: http://www.medel.com/blog/ HearPeers member Cara Mia (aka Yelena) posted recently about her favorite rehabilitation resources which may also help you too: http://www.medel.com/blog/the-best-cochlear-implant-rehabilitation-listening-resources/ Hope this helps and all the best! Leigh