ANA Discussion Forum
General Category => Hearing Issues => Topic started by: MusicTracy on March 25, 2014, 06:43:19 pm
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I am 7 months post gamma knife and just had my hearing retested. I still have moderate to severe hearing loss with no speech discrimination. Met with the audiologist regarding my options as it is very difficult for me to hear in group gatherings. As a music therapist I am frequently in group situations working with children and adults with neurodevelopmental disorders and having my hearing is very important to me. I am frequently frustrated that I can not hear my individuals speaking or singing over the background noise in the group settings.
I was told my options are the Cros as I have great hearing in my unaffected ear or the BAHA.
I am really at a loss as to which one I should go with. I understand there is a chance the insurance company will cover the BAHA but don't want that to be the one and only deciding factor.
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I think you'll have the same problem with crowds and noisy environments no matter which way you go.
I've had the Phonak CROS for almost two years. It's great. Except for crowds and noisy environments like restaurants.
However, Phonak recently came out with the Roger Pen. It's a directional microphone that you can point at people you want to hear.
I'm getting one next month so I can't say anything about results yet but here is Phonak's web page with details. Look promising.
http://www.phonak.com/com/b2c/en/products/wireless-accessories/products/roger-pen/hearing-aid-accessory.html
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I'm 6 months post Gamma Knife and just got my Phonak BiCros one week ago (see my post below yours called "Phonak BiCros so far so good". I can't say enough good things about my personal experience. Granted I am not SSD, but my word discrimination was at 20% and I had no end of trouble hearing people in many situations. Work was especially tough if people were speaking beside or behind me. With all the surrounding noise and paging system going on, I really struggled. For the past week I haven't once had to say "sorry I couldn't hear you". I'm still getting used to using it in different environments so I can't say in large crowds what it's like, but for my day to day activities, I'm thrilled.
Cathie
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Thanks for the replies. Echo, I did read through your post about the bicros. I am fortunate enough to only need the cros because I have no hearing loss in my other ear. As I have normal hearing in my good ear how does it feel to have the hearing aid in the ear.
Does anyone know how the cros or the baha deal with sudden loud noises as I work with children who struggle with impulse control and self-regulation. I don't want to blow out my good ear. For the past 7 months I have been trying to avoid loud instruments but don't think it is really fair to the children.
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As I've mentioned in previous posts I wear the BTE (behind-the-ear) Phonak BiCros so I had to learn how to put them on properly with the tiny ends going in the ear canal. It was a bit tricky the first few days, but now it's quite easy. For the first 3 days I had a mild headache which felt like pressure coming from inside my ears. I guess I was getting used to actually having something inside my ears! By the fifth day I realized that I couldn't feel them in my ears at all and I felt perfectly normal - no headaches and they were perfectly comfortable.
As for loud noises, others may have more experience with the Cros than I do. They come with a remote control that allows you to adjust the volume. I have mine set so that voices are easily heard all around me while at work. Unfortunately we have a very active paging system, which is fairly loud so it's the one annoying thing I have to deal with. I've had to play around with the volume to find a comfortable setting that allows for both people speaking normally and the paging system.
Cathie
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I am curious about this subject as well. I'm 9 mos post-op and am SSD. I had the official, "yep, you are deaf in your right ear" appointment, and now I'm scheduled to meet with an otologist about a hearing aid. I thought it was interesting that my ENT said I was only a candidate for a BAHA (because I don't wear glasses?) But from everything I've read here, the CROS sounds like a perfect fit. I definitely mentioned the CROS when I scheduled my appt. I'm just not excited about having my head cut open again if there's another solution that could work just as well. ;)
How long should it all take? How many appts? Do you normally get to leave right away with a test product or anything? How long does it usually take to order your final product? Any information you could provide would be appreciated.
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The day of my last hearing test was when I decided I was ready to go ahead and purchase the BiCros. My word discrimination had dropped to 20% and with my good ear not being 100% I was noticing problems at work and various social situations. The audiologist took about 5 minutes to do some measuring and we were done. The BiCros was ready for me to pick up two weeks after my appointment. The initial appointment to pick up the BiCros was 1 hour. The audiologist reviews how to wear it, how to clean it and she does some adjusting to the settings. I left the hospital wearing it and have never looked back! It's great. I go back in one more week (3 weeks after picking it up) so the audiologist can add some programs, make some further adjustments and see how I'm doing.
Not sure if all audiologists work the way mine does, but she wanted me to have 3 weeks to adjust to wearing them set at the basic "auto" setting. Once I had adjusted to wearing them and the new sounds I was hearing, she said she would add the different programs for me to start getting used to.
Not sure how it works in the US, but here in Toronto, I have a 90 day trial period where if I cannot adjust to wearing the BiCros (or any other hearing aid), it can be returned for either cash or an exchange of product.
I do wear glasses and most of the time I have no trouble wearing both the glasses and the BiCros. I get a little frustrated when switching glasses as I have a separate pair of glasses for working on the computer, a separate pair of prescription sunglasses and then my regular walking around and reading glasses. They all fit slightly different, so some pairs require a bit more wiggling to make sure they are straight.
Good luck and let us know how you make out.
Cathie
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Kristena
I also wear the Phonak BiCros, I highly recommend it.
Last week when I saw my neurotologist he said he would email a brochure on the BAHA. When I asked if that entailed surgery, he said yes. When he saw the look on my face he said well it's something to think about; you may want to wait a few years till the next generation comes out.
I told him I already used the Phonak BiCros. He said I wouldn't gain that much more by switching to the BAHA. Since I'm the original chicken little that did it for me. Not that much more gain for the pain.
I agree with ArizonaJack that it does have it's weakness in crowds and restaurants but then I make sure I sit with my bad ear away from the people I want to converse with. Ideally, if I can get a seat with my bad ear towards a wall for some reason that seems to work for me. Also, I do tend to turn my head more so that my good ear points toward the person / people that I want to converse with. This though I think is an old habit from way before I had hearing aids or knew what an AN was.
I do take my hearing aids totally out when I go to see a movie. Even with them out, the sound in the theaters is way too loud for me which is actually uncomfortable.
On a serious side, do your homework and pick what you feel you'll be comfortable with and can handle.
Karen
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Well today's appt was a bit of a waste. I'd been waiting for this otologist to come to a clinic closer to my home (which he only does once a month), and he told me today I'll have to make an appt at the other clinic, since that is where their "hearing aid showroom" is. I hope next time I'll be able to take a test drive! :)
He did ease my fears a bit about the BAHA. How it's just a small puncture in the skin and not created with a scalpel. And it would be just one hearing aid and not two. And it can be removed if I don't like it. But most people LOVE them. I guess I'll try again later...
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Saw the audiologist and my doctor yesterday. Made the decision to go with the Oticon BAHA. Surgery is scheduled for May 16th. Does anyone have any advice for me? I am a little scared, I have never had surgery on my head, my Acoustic Neuroma was treated with the Gamma Knife last August. I was surprised the doctor told me I could go back to work in 2 to 3 days. He also said I could wash my hair after 48 hours.
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Although a bit larger skin incision, Cochlear now has a magnetic attachment instead of the post, so nothing sticks through the skin. Believe that it's called BAHA Attract. Just made available in the US, but sounds like it's been around for a while in Australia.
I'm about a year out from surgery with 100% loss in AN ear and normal hearing in the other, so trying to give the non-aided hearing a good try before going forward. The problem that I see posted often is that the environments that are the most difficult (loud, restaurants, outdoors, etc), are also difficult with CROS and BAHA. Still thinking about it, but posts do provide some hope if I finally go through with some sort of aid.
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Had my BAHA implant 9 months post AN op (in March 2008). Absolutely LOVE it.
I started with a Cochlear Divino and moved up to a BP100.
Implant surgery is a piece of cake; nothing at all like AN surgery. Usually outpatient and lasts about 90 minutes - and a good amount of that time is spent draping you. I had my surgery while wide awake with local anesthesia (lidocaine); 90% of my docs patients opt to have the surgery that way - although he will "put you under" if you insist. I actually walked out of the hospital after the surgery was over and went about my normal day.
Had very little pain - nothing an Extra Strength Tylenol couldn't fix - although they usually give you a Rx for something like Vicodan since everyone tolerates pain differently.
Recovery/healing is usually easy and without complications.
Am forever grateful to my neurotologist for recommending the BAHA. It's not for everyone, but personally I couldn't imagine having something in my ear (hearing aid) or my mouth (Sound Byte). To each his own, but the BAHA has been a Godsend to me.
Best,
Jan
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Cookej,
FYI, When making the final decision I was informed I could not get the attract BAHA because I still need MRIs to monitor my acoustic neuroma. Magnets and MRIs do not mix.
Tracy
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I am currently trying out the Cros - I am SSD in my left ear (from AN removal) and have 100% hearing in my right ear.
So far I'd rate it a "B" . . . the good thing is it's highly programmable and I'm going back to the audiologist next week to tweak some settings. The units are very small (barely visible), and I can switch between standard and "Bi" (boosted) mode with a little button on the back.
As others have stated, doesn't help much in a crowded/noisy environment.
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I made the leap and scheduled my Baha surgery! I was leaning that way anyway, then I found out that my insurance doesn't cover hearing aids, and the Baha isn't considered a hearing aid.
I scheduled for a Friday to allow the most recovery before returning to work. Can anyone recall the recovery process? Is that going to be long enough? Do you know if you get to try out the headband while waiting for the ossification to take place? (I'm going to ask about that.) I would assume the snapping on and off is a bit tender at first? Does the snap start out super tight and loosen over time?
Also, I had the choice of the magnet model, but it was quite a bit larger than the other.
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Hey all,
I haven't been on here in a long time. Reading responses from people that have the Phonak Cros. I am getting to try it out for 2 weeks to see if this is will work for me. I get it Friday and I am excited to see how they work. I just want to see if it will help give my good ear a boost with hearing better.
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Just now jumping in - sorry to be late on input. I don't come here often anymore but feel its important to let people know some of the downfalls of BAHA surgery,ec. I had a BAHA implant and it never would heal, after 3 years of pain and antibiotics, I had another surgery to "fix" the skin problem and finally another to remove the post. After it was removed, I was told the post was not in my head properly and would never had healed (Dr. Baker in OKC did that).
The pain and issues with the BAHA was worse than AN Translab surgery! I would never recommend it based upon my experience...I would just go with something less invasive that probably works just as well.
I now have a bi-cros hearing aid. Both aids were very similar in hearing for me, and neither good in loud/crowded areas.
After all the expense and pain I now find its hardly worth wearing an aid as the background noises usually are too loud anyway. I think the benefits of an aid depends a lot on your work/career situation. Best wishes.
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mellorama - I agree 100%
Had my Cros for about 3 months now - helps in quiet environments but in a noisy room might as well just remove them . . .
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Hello,
I, too have fine hearing in my good ear, but severe/profound loss in my left ear. I do have a little hearing in the left ear, but functionally it's useless - I only have very high and very low pitch hearing with no speech at all. Because of this, a Baha is not an option apparently, so I have a cros.
It's purely to (hopefully) restore directionality which I have completely lost. Hearing aids can only amplify the hearing you have, they can't give back lost hearing - I was given a hearing aid initially fate the gamma knife, but it was worse than not having the aid! Rustling a newspaper sounded
cartoon -noisy!
So far, to be honest, the cros isn't a huge success, but it's needed a couple of repairs and I hope it can have a proper assessment when I get it back.
It was no use in noisy places, or to hear conversations, but as I understand, that's not its function.
We're all different, but I hope this helps.
:)
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My "procedure" is tomorrow morning (Friday the 13th--superstitious anyone?) Wish me luck! I'm way more nervous this time than for my craniotomy a year ago. MusicTracy, how are you doing?
There must be a promotion going on now, because I was asked to pick a free accessory. So I'm getting a wireless phone clip. It will be like my Baha is a bluetooth--and it can play music and stuff too! Bummer that I have to wait 3 months to experience the benefits.
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So that was a little more involved than I was prepared for. Apparently in my area they are pushing to have everyone implanted with the magnet version going forward. I said I didn't want that because it's so much larger (both inside and out), but I don't think the choice was mine. The Cochlear rep was at my surgery as well. They must have quite a few issues with infections and skin growing up around the post that they'd rather keep it enclosed.
I was planning for the simple puncture procedure with the post sticking out, but I got both the horseshoe-shaped incision to place the magnet, and they also had to cut away some of my titanium mesh from the retrosigmoid surgery a year ago to make room for the magnet! My head is still heavily bandaged, so I'm not exactly sure what it looks like under there yet. I was planning to return to work tomorrow, but I was told not to work for a week. I think I'll work from home tomorrow and play it by ear for Tuesday.
The good news is that I get my processor in 6 weeks versus 3 months with the post!
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I find it interesting you got the magnet option. My doctor told me I could not get it because of the MRIs I will need to watch the acoustic neuroma as I was treated with Gamma Knife.
I did not get the BAHA in the end. Two weeks before the surgery the insurance company informed me it was an exclusion on my policy. Found out the same day that the organization I've worked for for the last 13 years is ceasing operations June 30. My world has been turned upside down the past 2 months. So I've been busy searching for a new job which I begin on June 30th. Their insurance will kick in after 60 days so I'm going to see if it will cover the procedure. Still want the BAHA I may just have to wait a few more months. If it's not covered I may have to go with the Cros. Feel like I'm starting all over again.
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Well I have my next MRI on July 23. That will be the first time to see if my remaining tumor has grown at all since my surgery. I found a list of facts about MRIs on Cochlear's own website, and I brought that to my first post-op appt after the Baha magnet was implanted. It has all kinds of information about the settings for the MRIs, and how the MRI will leave a shadow for 4.5" from the magnet, and how the magnet will heat up during an extended MRI, etc. All he said was, "bring this to your next MRI appt." It didn't sound like he was very knowledgeable about it at all!
Is there anyone else out there who has been using the Cochlear Attract model of the Baha? What has your experience been? I feel a little like a guinea pig. It's been over 2 weeks since I had my "procedure," and I haven't been able to sleep on that side yet. Also taking glasses on and off is still a little tender. Now that the swelling has gone down, the magnet leaves quite a ridge that you can actually feel (and you don't want your glasses to get caught on it!)
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I've had Cros for a few days. I'm also having daily headaches, ear pain on untreated schwannoma side. I'm hoping the headaches stop soon, like others have reported.
How long did it take you to get used to Cros HAs ?
Does anyone sing in a choir? Mine make my voice sound tinny, rain barrel like. Music also sounds weird in a not so nice way. Has anyone had any success getting settings programmed so that your own voice sounds ok? ???
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Hi Jeanne,
I have the Phonak Audeo Q50 Bi Cros and absolutely love it. I got mine in March of this year. I started out wearing them all day, removing them as soon as I got home from work. The pressure in the ear feeling went away by day 4 as did the daily headaches. You can get the ear dome in various sizes so you may need to have your audiologist change them. Both my ears bothered me up until day 4 and then I no longer had any discomfort.
As for the tinny sound, that should also be an easy adjustment. The first day I picked up my hearing aids up the audiologist hooked them up to her computer to adjust the initial settings while I was wearing them. The initial volume setting was so high my voice sounded exactly as you describe...tinny or coming from a rain barrel. The audiologist turned the volume setting down until my voice sounded normal but somewhat louder to me when I spoke. I believe she set the volume at 75% capacity. I was still able to adjust the volume up or down through the remote but she recommended I try to keep the volume as high as was comfortable.
Since March I have had 3 additional visits where she has adjusted the volume program level - I am now at 90%. Each time she makes sure my voice does not sound tinny and each time it takes me a few days to adjust to the louder level.
I don't know if many audiologists help people adjust to wearing hearing aids in the same manner my audiologist has, but it made the transition for me very smooth and comfortable. I'm now at the point where if I don't wear them things just don't sound right.
Hang in there and give yourself a chance to adjust to them.
Cathie
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I've had Cros for a few days. I'm also having daily headaches, ear pain on untreated schwannoma side. I'm hoping the headaches stop soon, like others have reported.
How long did it take you to get used to Cros HAs ?
I've had mine for over 2 years. I didn't have headaches or ear pain but they drove me crazy for a month having to reach up to push the volume buttons.
Then I discovered the MyPilot remote control and had my audiologist order me one.
http://www.phonak.com/com/b2c/en/products/wireless-accessories/products/mypilot/hearing-aid-accessory.html
If you don't have one of those, I highly recommend getting one. There is a cheaper remote controls without the screen (ComPilot, PilotOne) but having the screen is worth the extra cost.
Does anyone sing in a choir? Mine make my voice sound tinny, rain barrel like. Music also sounds weird in a not so nice way. Has anyone had any success getting settings programmed so that your own voice sounds ok? ???
With the remote control your hearing aids can be programmed for a variety of scenarios, including one for Music.
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I am SSD and have to make this decision: Cross or BAHA? :)
I've read many posts about it and what I'm thinking now is:
- both of them are very helpful in quiet or not very noisy environments, so much less in noisy places
- BAHA requires sugery, cross doesn't..
- ... but you don't have to put anything in your good ear and BAHA is possibly cheaper than cross
I have tried phonak cross for nearly three weeks now, and I'm past the headache of the first days. I like it. It really makes it easier at university and in many everyday situations, but it could be better. Speech recognition isn't always great, it's expensive, it's annoying to have something in my good ear, in a noisy place I just take it off.
Another thing bothering me is the wireless connection. All those waves going through my brain :o isn't that dangerous? Okay that it's a very low intensity, but still... Wearing it all day couldn't be a risk?
I know that nothing sill be like natural hearing but I'm trying to find out which solutions would be best for me.
How visible is the BAHA? I'm not planning to hide it all the times, but I'd like to be able to when I want. Will I be able to tie up my hair and still hide it? Like in a lose ponytail, or a braid.
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BAHA is really not visible - unless you're a man who is bald.
I wear my hair very short for a woman (collar length) and no one can see my BAHA device. It helps that it's brown (like my hair) but even if it were red I doubt anyone would notice it.
Most people aren't looking at the back of my head (unless they are behind me) and even then most of them aren't looking behind my ear.
The device sits very close to the skull; perhaps 1/8" away and the device isn't that thick.
I am one who ABSOLUTELY LOVES my BAHA and can't imagine life without it. My opinion, not everyone's obviously, but it's been a Godsend to me and I've never regretted getting one.
Jan
PS - if the idea of the implant surgery is holding you back, don't let it. It was the only thing that made me hesitate and it was nothing like my AN surgery. Outpatient procedure. Local anesthesia. Walked out of the OR about 90 minutes after the procedure started. Piece of cake ;D
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Thank you Jan :) wearing a baha, are you able to hear someone whispering on your deaf side? How good is it in a noisy situation? Do you feel like turning/taking it off, or does it help?
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Hi Helena14 .....
I know you asked Jan this question, but just popping in here to add my experience.
I wear the Oticon Medical Ponto Pro baha and yes, I can hear someone whispering on my deaf side. However, it is important to remember that all sounds coming in from the deaf side (when one has had the inner ear and nerve removed during a translab surgery) are bone-conducted (or transferred as in the case of Cross aids) to your hearing side. Therefore, I still sometimes whirl around because I am not sure where the whisper is coming from. In other words, directionality is still a problem, but that is the case with anyone who is single side deaf (SSD) regardless of what type of hearing assist is used or not used.
Hope that helps. Clarice
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Thank you Clarice. I am SSD since I was three , so I developed some sort of directionality over the years, but I'm still far from a "normal" one. My nerve hasn't been removed but it's damaged and doesn't work, so I think our situation is alike.
I wear the Oticon Medical Ponto Pro baha and yes, I can hear someone whispering on my deaf side.
That's what I am looking for because when I'm at lectures, in class, theatre, during meals etc I find it really difficult to understand someone on my deaf side, especially if he's speaking quietly. In those situations there's always some noise (the movie's audio, a teacher speaking...) and I just can't make out a word of what I am told by people sitting near to me (on that side).
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Like Clarice, I can hear someone whisper on my deaf side. And, as she mentioned, it's really just an "illusion"; I'm not really hearing through my deaf ear - just feeling like I am.
BAHAs, like most hearing devices, aren't perfect. They tend to pick up all sounds; not just give you the ones you want to hear. Filtering out unwanted noise/sound is difficult for them. So there are limitations in noisy and/or crowded environments. But improvements are being made all the time. When I got my first BAHA device (a Cochlear Divino) in 2008 it had what is referred to as two "channels". A few years later when I upgraded to the Cochlear BP100 it had 12 channels (the Oticon Ponto Pro had 10). The more channels a BAHA device has, the better is it at filtering out unwanted sound because there are more "places" for it to "go". There is a huge difference between my one channel and my twelve channels. My Divino also only had 1 setting; my BP100 has 3 settings. That helps too.
And new devices - by both Cochlear and Oticon - are being introduced all the time. The technology just keeps getting better and better.
Jan