ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: MaryBKAriz on June 14, 2008, 03:40:16 pm
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Hi everyone,
As you may know I had CK early this month. At the last minute it was changed to 1 day instead of three because my hearing was not worth saving.
I would like to know what people with Radiosurgery are doing if they have no salvagable hearing. Does anyone use the BAHA? Anyone Transear? Anything else?
Pre-treatment I had such terrible time with word recognition. From what I understand, no conventional hearing aid can fix that, or has someone out there with word recognition issues found a type that does indeed work?
I appreciate any and all input! :)
Mary
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Hi Mary,
I don't use anything. I just try to deal with it. I don't have the money to invest in an expensive aid that may or may not work for me. If money was not an issue, I'd try transear or crosslink or one of those. I probably wouldn't do BAHA, just because...well I'm not sure why. Just doesn't sound like something I'd want to do.
Sue in Vancouver
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Mary -
I use the BAHA and am very impressed with it ;D
Oh wait, you already know that, don't you ::)
Jan
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Mary,
I was already hard of hearing (serious loss on the left, mild loss on the right) prior to getting the right sided AN, which wasn't diagnosed till after I was already deaf on the right. So I have worn a left side hearing aid since I was 10, and have a lot of experience with hearing issues as my situation gradually changed (meaning what I can share with you might not be relevant, but then again it might be helpful--so, here goes!)
I believe it's a fallacy that no hearing aid will help with word discrimination. I can hear what people say perfectly one on one, or when a sound environment is good. It's true that learning to interpret and get used to the nature of sound when you first put on an aid takes time. When I've switched to a new aid (because the last one wasn't powerful enough--has happened 3 or 4 times in my life), it took a couple of weeks to adjust. The slamming of a car door could be painfully loud, the sound of a glass being put down distractingly tinny, and I couldn't decipher what my kids were saying to me--even when the "volume" of their voices was ok, the "pitch" was off and the sound was garbled. (This effect was extremely pronounced the couple of weeks I tried out a "Cros" aid (a type of transear) soon after being diagnosed as SSD, and I finally gave up and stuck with a single, heavy duty aid on the left!)
Sometimes the audiologist had to tinker with the internal settings (and eventually, teach me how to myself), and sometimes I just needed to give it a few days. I know the digital aids that have come out recently are supposed to be a huge advance as far as "natural" sound quality, but I'm so attached to the waterproof aids I've been wearing since the early nineties (because I wanted to be able to hang poolside with my family without obsessing over my aid getting wet--I can even swim with it and don't worry about getting caught in a sudden rainshower anymore!) that I haven't tried a digital aid myself. (The aid I use is a "Rionet", from a Japanese company--it's actually about half the price of a digital, and I REALLY hope the company keeps producing it; I'm on my third one at this point...)
My mother and father-in-law had a very hard time adjusting to hearing aids as seniors, and I suspect I have an advantage over ANers who put on an aid for the first time as an adult. Hearing aids DO change the way things sound from "natural" sound, though developments in them (such as digital aids) probably get it closer to "right". And, to give you an idea how subtle a change in sound quality can throw our ability to hear well: When I have had to send one of my Rionets in for repair and switch to an old one in the meantime, I struggle to hear well till I get the "new" one back--even though they're not "different" prescriptions!
Basically, what I'm suggesting is that hearing aids are WONDERFUL devices--they aren't as good as your own hearing, to be sure, but they sure make it possible to live a pretty close to "normal" life. I don't know if you'll opt for BAHA or an aid, I just wanted to say that you shouldn't give up--good word discrimination lies well within your grasp! :)
Carrie
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I am new to hearing aids, but I agree with Carrie, they are remarkably good at what they do. I think many people who get hearing aids later in life don't wear them enough first, before deciding that they don't sound right and giving up on them.
I have one of the newer digital hearing aids. I think the main thing digital does it make more of the adjustments automatically, with the ability to "tune" the response on the fly. Mine has good background noise suppression, which is one of the things that improves speech recognition. It also has speech enhancement, which means it picks out the sounds that contribute to speech recognition and emphasizes those. It supposedly can even pick out what direction a voice is coming from, and isolate the speaker from other sounds on either side, though I can't say I have noticed that.
The sound is not entirely natural. It will compress the dynamic range, meaning that loud sounds are softer, while softer sounds are louder. This helps picking up all the words that someone is saying, but can also make the sound more monotonous. To me voices tend to sound a bit like they are coming in over a headset from an air traffic controller, a side effect of emphasizing the sounds that allow good word discrimination. "Roger Bob, 10-4, Alpha Bravo Charlie, Copy that."
The more I wear it, though, the more I get used to it, the less I notice how things sound different, and the more I appreciate that I can hear things again. I didn't remember that if your shoe laces are untied, you can actually hear the ends tapping on the floor. "What is that sound? Why does it stop every time I stop and try to locate it?" It can be fun. :)
Steve
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Mary~
I have never had anything and have done fine. I am sure that there are some GREAT products out there now that would help me, I just am OK with the way it is now and don't have the time to seek out new things! I am very pleased with my results of the T3, but after what happened last time, I am not ready to tackle anything else new right now!! Also, I have enough trouble keeping up with all the girlies stuff - I can see me jumping in the pool w/ an aid on the 1st day I get it. I could barely remember Kendie's earplugs when she had to wear those!! LOL!! I think that somewhere down the line, I will check in to all that, but not now. Actually, I am more concerned about David's hearing and I am the one TOTALLY deaf on one side!! We were at his parent's for Memorial Day & we were all outside by the pool - all the sudden I was running in saying, "The phone is ringing..." his mom told me later that they all looked at each other & laughed - none of them had heard it & the deaf one did!! ;)
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Hey Mary :-*
In line with your question of radio-patients and the use of hearing devices..... I have thought about getting one but my hearing is still pretty good (approx 80-85%). I have been told that since my hearing nerve is intact, a BAHA is not usually recommended. That was noted at a recent ANA Support Group meeting where the guest speaker is an audiology surgeon who did a discussion re: BAHA. (pretty much everyone there were surgical patients... as well at elliemae and kmacdonald, both watch/wait). He shared with me that a standard hearing aid vs. BAHA would be used for radio patient since hearing nerve was still intact. Not sure if he's 100% on it but I'm going to follow this thread to see if any radio-patients are using hearing devices and which ones they opted to get. I'd like to know as well.
xo
Phyl
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Mary--
Another thought: Don't know if you have made contact with a local audiologist, or if the hospital where you got your CK done has an audiology dept, but perhaps you can "test drive" a Transear to see if it agrees with you?
I just remembered that the audiology dept of OSU in Columbus (where we moved the year after my surgery) let me try out a Cros aid at home for a couple of weeks before deciding if I'd keep it (which I didn't). I lost the deposit--50$, if I remember correctly--but got the opportunity to really see if it worked for me (something an office visit trial can't possibly determine) without shelling out the full price.
Since you have considered the BAHA, which is an even bigger commitment to make, giving a Transear a closer-but-still-noncommital look may be a good step for you.
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Do they have a TransEar demo ???
I'm not sure because the way I understand it, the device is custom made to fit in your ear canal and from what the audiologist told me, it fits very deep.
Can someone with a TransEar comment on this? Boppie?
Jan
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I am so thankful for all of the input. Keep 'er coming!!! :) You will never know how helpful it is to me.
My main AN physician is Dr. Daspit. He is out of House Ear Institute. Daspit specializes in Otolaryngology, Otology, Neurotology. He is really a top in his field in balance, too, thank goodness. (Balance being my worst issue pre and post CK). It is his partner, Dr. Weisskopf that I requested to see Friday since he does surgery. Daspit no longer does it. Weisskopf is Board Certified in Otolaryngology and Neurotology. In addition to 2 of their audiologists, I have seen 3 others. They are both MAJOR players in the AN department at Barrow Neurological Institute here in Phoenix. They understand EARS! ;D I want to consult with Weisskopf about Labrinthectomy and BAHA. If I decide to do it, I would want to schedule it by the end of the year for some huge insurance reasons.
My AN is totally filling my internal auditory canal carrying the vestibular nerve and spilling into the cerebellopontane angle. From what I understand, my nerve in there is badly damaged and will not return its past usefulness. In other words, it is not intact.
While I have time, I want to do all research of all options now. When sounds are amplified in that ear, by the audiologists - it just warps the sound louder, not more distinctly. So far they all have said regular hearing aids will do me no good. My word recognition being about 20%. Are there some that also help the distortion? Louder distortion would really drive me nuts and be an expensive experiment since insurance doesn't cover it. I would have NO problems buying them if they really would work, though. It would be worth the investment.
My Mom who lives with us wears digital hearing aids - the latest, the greatest. They are amazing, and I am with her during her appointments. I have done that since pre-hearing problems for me. So I can to be a sponge there, too.
I will call Daspit today about finishing my steroids....YEA!!!!!!! I hope to get some perspective on my balance, dizzy issues. I am going to Vestibular Therapy starting tomorrow. It seems no sooner do I get a little better with it than it worsens, again. This is a main reason my AN was found, besides the fact my hearing in that ear has gone really bad with distortion.
So at the ANA meeting here about 6 weeks ago, they featured the BAHA. They had the demo. There was a room full of people, some wearing the BAHAs. When it was my turn to try it, they couldn't find the "sweet spot" quickly so I sent them on their way, doubting I would ever be truly interested, anyway. It did work on my husband and he was totally blown away by the clarity.
All this adds up to why I want to know what other radiosurgery people ar3e doing for shot hearing and balance issues.
Take care all, and thanks, again for all the help. I don't know how others get through all this without the angels on this site. Sorry this is probably disjointed but I am not able to stay on task as things are hopping here.
Mary 8)
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You're probably right, Jan. I just went to the TransEar site, and unlike a Cros or BiCros, the molded ear piece on it has an "oscillator" built in. With a BiCros (the version of the Cros I tried--it's for folks who don't have a "good" ear), 2 units that look like behind-the-ear hearing aids (one the amplifier and one the "receiver") are fitted with standard ear molds--custom-made but inexpensively so--which can be detached from the device if a buyer chooses to return it.
If the TransEar is very expensive, though, maybe the company has managed to develop a showroom demo for potential buyers? I look forward to learning what TransEar wearers have to report...
Mary--it's great that you're researching your options so thoroughly and have a team of top doctors you feel confident in. Have they made any recommendations besides BAHA, which you seem to be dubious about?
As far as hearing aids and distortion--the only one that I would describe as coming close to distorting sound for me was the BiCros, which was supposed to distribute the amplified hearing on my impaired-but-usable side bilaterally; it didn't work! Typically, though, louder is better, though sometimes I have had to go through an adjustment period before I am hearing things without all-out conscious effort.
I have very little hearing in my left ear (it is "moderately severe", closest you can come to "profound" aka deaf, and it is sensorineural, same as that caused by an AN or AN surgery). Without my aid, my word recognition is literally non-existent, because I literally can't hear anything (except a lawn mower, bomb, or heavy metal concert, maybe...) I'm perplexed by the idea of a deficit that a hearing aid won't help... By "normal" hearing aid, do your audiologists mean a unilateral aid, as opposed to one that seeks to involve your good ear in the correction? Have they said whether a Transear or Cros might be helpful to you?
Good luck with this dilemma, and good luck with the vestibular therapy, too!
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Hi cmp, :)
My Dr.s have made no recommendations at all yet. I am the one pursuing options, including the BAHA - at this point. I suspect I will get input Friday.
If I understand, the BAHA sends the sound signal via bone conduction from the dysfunctional side to the functioning ear and nerve. It is for SSD.
Thank you,
Mary 8)
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Mary-
I don't have much to add to all the great advice - but I would just like to say that I LOVE your attitude!
Being newly SSD myself (that would be ZERO word recognition!) I am also starting to think about possible options. I am very interested in reading everyone's posts about transear and the cros devices. And, of course, I've been following Jan's BAHA experience very closely. I am no where near making a decision. But, like you, I will probably do somethign before the end of the year for insurance reasons.
I'll be back to check on what other words of wisdom you get here.
You go!
Debbi
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Does anyone know of someone who has had radiosurgery and BAHA? :)
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Mary:
I've been SSD for quite a few years. My hearing was already lost in the AN-affected ear prior to my diagnosis so hearing preservation was not an issue when I had my surgery. I had the retrosigmoid approach surgery followed by FSR. Like some others, I simply cope with my diminished hearing. It gets annoying at times but isn't a huge problem for me as I've learned how to compensate. That said, I can easily understand why some SSD folks seek to regain some semblance of hearing with one of the many devices available. I fully support those folks and I'm pleased that they've found an improvement in their hearing and their life via a hearing assist of some kind. It's a very personal decision. I may decide to avail myself of some type of hearing aid in the future but I don't see a need right now. If you do, by all means, continue your research and quest to regain any lost hearing post-op. I wish you much success and hope my comment is helpful to you in some way, Mary.
Jim
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Mary -
was your doctor's appointment today? Did you get to try the BAHA demo? Any feedback?
Jan
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Mary, I had gamma knife in 05 and lost my hearing on the left side gradually over a few months. I have been wearing a bi-cross system for over a year and a half and it is a great help. The hearing in my good is is very good and normally would not use an aid but with the cross system they programmed a little help on the good side too. It helps with the sounds that you miss on your deaf side but of course it's still going in that one side so it's no help with directional hearing and sometimes in crowded rooms it just adds to the confusion of SSD but you can turn it off or lower the volume.
I have had some problems with am radio station interference in some places but it's manageable.
I also got a second set of aids from the VA which are suppose to be the best on the market, phonak but I have had trouble getting them right. they do have good sound quality but have had trouble with them being too loud all the time or not loud enough when changed. They are behind the ear models and are a little more hardware to carry around than my other which are in the ear and are made by Interton
I tried a transear too but was very uncomfortable and I got little sound transfer from it. Could be that with someone with more experience may have been able to get it to work better as the audio guy said that it was the first one he had ever ordered.
I have considered baha but never made the decision on that option
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Good information, Richey! Thank you! :)
Jan, thank you for remembering my appointment, wow! I have had the demo at the ANA meeting. It was most impressive. Here is my update for all:
I had an appointment Friday with the surgical doctor. It was an information gathering appointment. I copied and pasted an emaii I sent friends and family:
Yin Yang, balance…..whatever you want to call it. Life is all about the balance. Without the unwelcome challenges how could we appreciate the surprise joys in life? So I am sitting on the curb watching for my ole friend joy. It is always there, sometimes it hides better than others. I do like to look at the world as my glass is half full, because it is! :)
I very much appreciate all the people out there struggling with their own issues, many people have much worse problems and my heart and prayers go to them. They give me the gift of knowing and balancing the reality of my situation. I am blessed.
Yesterday was a difficult day. First, I was dizzier than normal. Then my doctor appointment with the surgeon was in the late afternoon when I usually get worse.
Here is what he had to say:
Hearing
• My varying hearing is not uncommon (between bad and worse). I have had this since pre-ck
• A BAHA (Bone Anchored Hearing Aid) is an option for me and may be a good one. He really likes it and knows of many radiosurgery patients who have gone this route.
• He is not crazy about Transear. If I go that route, I will need to find someone else (of course, he is a surgeon, not a hearing aid dispenser.) He said many find it uncomfortable.
• He informed me the Cross Aid (sp?) may be another option. It requires hearing aids in both ears. In the bad ear the signal is picked up and transmitted to the receiver in the good ear.
• There is no hurry, we can wait until November to see where I at my follow-up MRI to see what we will do
Balance
• He witnessed how dizzy I am.
• He said because I have 24% left of my balance in the bad side, my brain is always trying to balance it with my good side through inputs from my vestibular nerves (one with the tumor). The signals vary so it is always adjusting, making me dizzy. This may get better, could get worse, could stay the same, could go almost away. That narrows things down for me – LOL. I have more issues with dizziness than the "average" AN patient, but at the same time it isn't unusual
• He wants me to continue with the balance exercises, push myself further (which is hard to do when you are not sure of your ability to stay upright, never mind trying to do something in addition at the same time!)
• I need to wait until November to have my balance reassessed to see what is happening then - sound familiar?
• When I asked about the labrinthectomy, he agreed it would get rid of the dizziness as being a major issue for me. He said it could be an option down the line. THEN the bomb dropped…..he said if he does it, what he would recommend is doing the Translab surgery and taking out the tumor! He is the same doctor that recommended CK before treatment. Surgery is just what I avoided by doing the cyberknife! He said it would be so close to the tumor if they do the cochlea surgery I could be free of the thing, in addition. The only big danger in that is the facial nerve. (AND the major surgery involved.) I think I like being dizzy and hearing is overrated. I did CK to try to preserve my facial nerve. That is one of the scariest side effects to surgery to me.
• He remarked, referring to my exceptional level of dizziness, and some worsening since CK that sometimes cybernife does make this worse. Without my dizziness, I wouldn’t have been diagnosed with my tumor as early.
• I may have more severe dizziness also because I had the entire dosage in one treatment instead of the three we were initially scheduled to do when I still had hearing to save.
I had heard from a wonderful little birdie that perhaps very low dosage valium twice a day would take the edge off of the dizziness. I was going to ask him about that and forgot!!!!!!! I feel DUMB! If I don't get relief soon from these exercises, I will call and ask. I can't wait until November. I will work like crazy to get on top of it, though.
My hero, Weldon took me on a date last night for a great dinner out. That was the medicine I really needed. Spending the evening with my sweetie! Today he is driving to Texas to see his Dad. He will return on the 29th. When he comes home, he will have the 2 grandkids with him!
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I think I like being dizzy and hearing is overrated.
:D
It sounds like it was a pretty emotionally confusing appointment for you, Mary--no wonder you forgot to ask about a low dose of valium to help with dizziness. (Why not follow up with a call? I got so discombobulated when my neurosurgeon, at my first visit there, suggested I investigate radiosurgery--not at all what I was expecting--that I forgot to ask the questions I had written down and couldn't even remember some of what he'd said clearly. I sent him an email the day after and he was quite gracious about clearing things up for me).
I really hope you are able to address your dizziness through vestibular excercises and perhaps medication and won't have to go the surgery route again. Whatever you decide, good luck!
Glad your dinner date lifted your spirits a bit!
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Thank you, cmp....I really appreciate your input. I am back into sponge mode. :)
Mary
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Dear Mary,
have been reading this thread for a couple days and very interested too in what people have chosen to do after CK or GK.
It will be 2 years in August when I had GK. I had 65% speech discrimination and at my last appt, it was down to 20%. Although I have lost hearing I am happy to report that no growth has shown on the followup MRIs. My ENT suggested BiCross or BAHA. He said it will be up to me when the hearing (or lack of ) becomes bothersome. It certain situations I do miss hearing and try to position myself so my good ear is available. At times I think it bothers my family more than it bothers me. I have thought about this fall after my next folllow up appt to investigate the hearing devices.
Sounds like you had an overwhelming DR's appt-my thoughts are with you.
Janet
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Hey Mary,
I sent you a PM yesterday...at least I think/hope I sent it...let me know if you got it. It's highly possible I didn't hit the right button!
Thinking of you alot,
Cindy