Newbie and Choclear Implants

[cobbler]

Hello!

I am newly diagnosed with an AN since May - finally saw Dr. McElveen for North Carolina and waiting on surgery date.  I am thankful to find this group. Everything I have found on the web has been so negative.

Since I have no hearing in my right ear - they briefly mentioned a cochlear implant. Does anyone have experience for these?

Thanks in advance!
Misty

[Jim Scott]

Hello - and welcome Misty!  (cobbler)

I'm sorry to learn that you've been diagnosed with an acoustic neuroma and have lost all hearing in one ear (me too).  I'm not a doctor so my opinion is basically 'uneducated' but because the hearing nerve is usually damaged by the tumor, I doubt that a cochlear implant would be feasible for you because it depends on the nerve that transmits sound to the brain to be processed.  Unless that nerve is functioning normally, a cochlear implant would not be useful.  However, a BAHA (Bone Anchored Hearing Aid) would be. These are designed specifically for those with unilateral hearing loss (SSD -Single Side Deaf) and those who have them usually are delighted with the result.  Insurance often covers the (high) cost.  Other members will soon be posting more information on BAHA units but I wanted to welcome you and mention this alternative hearing device.  I hope we can be of more help to you as you progress in your AN journey.

Jim

[jerseygirl]

Hi, Cobbler,

If they mention cochlear implant, then they consider a chance to preserve the hearing nerve a realistic possibility (although like Jim mentioned not a guarantee) and the tumor being quite small. Usually when doctors consider cochlear implants, they do it for patients who are deaf or losing hearing in both ears. For SSD, when one ear is quite good, BAHA (or its alternative)  is better. It gives better performance, and also allows for periodic MRIs, the surgery is a lot simpler and easier and chance of complications is much smaller. A cochlear implant is usually the last resort. One member who ended up being NF2, had surgery on her second AN with the thought that she might have cochlear implant in the near future. However, she did not really need it because miraculously, the doctors were able to preserve her hearing nerve and save her hearing. It is disappointing (to say the least!) when the hearing nerve is preserved during surgery but hearing is no longer usable. Maybe, she will chime in and tell you more about it. Meanwhile, best of luck in your treatment and recovery!

                      Eve

[Cheryl R]

Hi Misty,     I am the one who was going to be having the cochlear implant but did not need it as the the acoustic nerve was saved and hearing did improve in the one ear.    I am deaf on the other side.         My happening was not the usual happening and I was close to completely deaf prior to the last surgery.     This was my 3rd tumor but the only one on the left.   I had a facial neuroma and an AN on the right.              Usually CIs are only for people with bilateral deafness.             I am assuming that this was for your AN side and you have good hearing on the other.             I wasn't completely sure in reading your post that is what the dr meant it for.          Drs do vary in how much they do for a patient and some have more experience or are just braver in what they will try.     I go to the Univ of Iowa for my care.                        I have not heard of many CIs done just for the one sided deafness as the BAHA now is the implant used more.   
   It is easy to read of many peoples problems with ANs here and not see that many do well and do adjust or recover in time well and are gone from the various AN sites in time.   The ones with more problems hang around more so it is easy to think that all ANers have such issues post op or post radiation.                   We do like to be of what help we can be as know all too well how scary it is to find out one has such a tumor.     There is life after treatment!
                                  Good luck with hopw it goes for you!                    Cheryl R             

[grega]

Hi Misty,

No experience with that implant, but I echo Jim's and Eve's thoughts about BAHA .... after only one day of use.  Just got the BP100 snapped on yesterday, after waiting the requisite 3 months for the titanium implant to osseointegrate (yep, that's right) with my skull.  But the time passed quickly, as others have expressed.

Since 2004, when AN surgery left me SSD, I've tried an in-the-ear hearing aid for transmitting sound thru my skull (very uncomfortable), as well as cros hearing aids.  And of course most of that time I'd position myself so I could hear things on my hearing side, even with the aids.  But the two devices weren't effective, so I became interested in, and researched, BAHA.

I'd read many posts herein about BAHA, and always had a thought in mind that sound quality might be similar to the cross aids .... somehow not as powerful as desired.  But I'm pleasantly surprised .... it's truly working for me very well.  I'm now using a demo till my own arrives, so I'll have time to try it in diff situations to make sure it's the right model.

Sorry, too many details for your concern about c. implants.  I expect others will chime in about BAHA.  If you don't see any in this thread, seek out BAHA feedback in the search box, or go to Hearing Issues on the main menu.

Best to ya!
Greg  

[Raven]

I belive you have to be a "canidate" for a cochlear implant, you just can't get one because you are SSD, some insurances will not pay for it. Also, it is surgery, maybe you would not want to go thru that. Like CherylR, being NF2 I qualify for a CI but I don't feel I need it and hopefully never will. Since I still have a AN in my right side I still need annual MRIs, having a CI would make this difficult as I would need to have the implant removed every time I needed an MRI and then put back in.

Hope this helps.......John

[cobbler]

Thanks for the responses! I just learned my surgery date of October 26th.  I also learned that I am not a candidate for cochlear implant. I have been offered the BAHA. I have to make a decision soon as they will implant this at the same time they remove my AN.

I have sooo many questions, fears etc. About the surgery and the implant! It looks like I will spend my weekend doing research!

Any information is welcome! I am an information junky and so happy to have found this site.
Happy Weekend!
Misty

[grega]

Yep, Misty, this is one of the best places to get info about the different choices you have, as well as feedback and support from so many good people who wish you only the best.

And not unlike your website, info might come fast and furious, or perhaps a bit slower.  Either way, take time to sift thru and try to digest it all so you can choose what's right for you.  And don't hesitate to ask any and all questions ....... most likely, there is someone "listening" who can help you.

Keep  -ing

Greg

[leapyrtwins]

Hi, Misty and welcome to the Forum 

Sorry I'm late to the party, but I'm on vacation (Jersey shore) and have had limited access to the internet.

Anyway, BAHAs totally ROCK and I highly recommend them to everyone I know who is SSD.  I've had mine for a little over 2 years now - started with the Divino and then upgraded to the BP100.

Lots of us on the Forum have BAHAs and we're more than happy to answer any questions you may have about them.  Before I got mine, several of my fellow Forumites were incredibly helpful to me and I like to return the favor to "newbies"; so please don't hesitate to ask me anything - either on the open forum or through a PM.

Getting a BAHA was one of THE best things I've ever done.  I'm so impressed with mine that I became a volunteer for Cochlear Americas and I spend lots of time answering questions about the BAHA and telling others of my experience.  As a volunteer, I'm also learning about CIs (Cochlear Implants).

If you get a chance, check out www.cochlearcommunity.com  It's a forum similar to this one (it's free to register).

There is also lots of great information on Cochlear's main website www.cochlearamericas.com

Best,

Jan

[cobbler]

Thanks for your reply Jan!
I have been pouring over information all weekend on the BAHA and I do have a couple of questions.

I have ringing - Will this interfere with the BAHA? Or will I still have ringing and be able to hear?
I seem to be really bothered by loud crowd noises. It can be overwhelming. Does this help?
What if I get it and don't like it? What happens to the screw? My husband says he will just file it down for me - HAHA!
How about scuba diving? I realize that I can not get the device wet but will the implant be affected with depths?

Cochlear should be proud to have you as a volunteer!
Thank you so much for your time!

[leapyrtwins]

Misty -

thanks for your kind words.  I've found myself so impressed with my BAHA that I can't imagine not telling others about it.

I fortunately don't suffer from tinnitus (ringing in the ears) but it is my understanding from talking with my neurotologist (who does many, many BAHA implants) that a BAHA will neither improve tinnitus nor make it worse.  Lot of BAHA recipients have tinnitus and it doesn't interfere with the performance of their device.

In my experience, the BAHA will make loud and/or crowded environments less overwhelming.  The upgraded device I wear (the BP100) is a great improvement over older models in this area.  It has 12 channels and is able to filter out background noise and help the wearer focus on what he/she really wants to hear.  It's not perfect, but it's pretty darn good.

If you don't like the BAHA once you have the implant, you can simply stop wearing the device and the skin on your scalp will eventually grow over the abutment.  The abutment is the "top piece" (looks kind of like a snapper) that is screwed into the titanium rod that is implanted into the skull.  It's also possible to have the abutment unscrewed and removed before letting the skin grow back.

At the time I had my BAHA implant, my neurotologist had done over 200 of them and he told me that only one patient decided she didn't like it.  So she decided to let the skin grow back.  I thought that 1 out of 200 was pretty good odds.

Scuba diving is not a problem; depths are not an issue.  You are correct, you don't want to get the device wet (it works on a battery that isn't waterproof) but submerging your head in water is perfectly acceptable.
 
Jan

[grega]

Misty ...... I echo Jan's sentiments .... but only in one ear 

Got SSD .... got tinnitus .... got BAHA .... got a big smile on my face    cause it works in the louder places in which I find myself, and (my) tinnitus does not interfere.

Greg

[leapyrtwins]

BAHAs and smiles just seem to go together.

At least in my experience 

Jan