ANA Discussion Forum
General Category => Hearing Issues => Topic started by: Patti UT on October 21, 2009, 12:32:45 pm
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HI All,
I have been investigating a newer device called neuromonics for help with tinnitus. It is suppose to be much better than tinnitus retraining therapy (TRT). Less time to work and less hassle for the patient. It takes only 6 months of wearing the device 2 hours a day vs 2 years for TRT. Like most hearing type devices most insurance won't cover it. it cost $3500.00 but the place I found it nearest my home will let me pay over 18 months w/o interest. Check out their website at WWW.NEUROMONICS.COM. After you click on your country, click on the "A New Breakthrough" at the top, then on the left click on "sound demo" It gives you the various sounds of tinitus. I found 3 of my sounds on there. Good to play it for spouses/family so they can get an idea ofr hat it is we live with 24/7. Very interesting and encouraging that there may be hope for lessoning the noise, as mine is pretty unbearable thest days.
Patti ut
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Patti .....
Thanks for the link and instructions on the neuromonics information. $3500.00 is pretty steep when insurance will not cover it ..... but if it really works, it would be worth every penny. Let us know what your results are ..... and thanks for being a Forum "guinea pig." :-[
Clarice
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Patti -
did a search on "neuromonics" because it sounded familiar, and found that Mickey did it. You might want to read some of his posts about his experience with it.
Jan
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Thanks, I'll look at his posts, I postponed my appt to see if there is anything new I can add to our insurance next monthwhen we have open enrollment to get it covered. Also, had an appt with my ENT yesterday, he said it's like an expensive iopd, but didn't really seem to know that much aobut it. My impression is the surgeons just do surgery, and don't look into anything to help with the aftermath of the surgery.
patti ut
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Hi everyone! Yes I have done the Neuromonics procedure. It was quite expensive but my insurance covered 2/3 of the costs. If you fight with your insurance carrier as I did and explain this is a viable treatment for the relief of your problem they may help. Now, was it worth it? I would say so. With my tinnitus which I`ve had for close to 30 years it gave me relief. It hasn`t dissapeared (has reduced) and has made it much more manageable. Kind of puts it in a place of where its a part of your being and not so much an annoince. Best way I can descrbe it. Best wishes, Mickey
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Hi Patty,
Since you're planning on having surgery I'd wait for any tinnitus treatment, as it could effect the tinnitus. I've read where people that have it come out without it after surgery and vice versa (as in my case). melinda
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Melinda,
your tinnitus actually went away????? that is fantastic. Mine was pretty loud before my middle fosa 5 years ago and got much louder after the surgery. The last year or so it has increased in volume even more to the point of driving me crazy. There is no ignoring it. The second I open my eyes in the morning, there it is screaming. So anything that will help I am willing to look at. My biggest fear is of it getting even worse again after the next surgery. I really can't imagine life with it much louder than it is now. I had a great dream about a month ago. That I woke from the translab surgery and it was dead silent. I was estatic to have the tinnitus gone and didn't care about loosing the rest of my hearing for silence. Unfortunately, I woke up and realized it was a dream. Hey, dreams can come true , right? :o)
patti ut
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If they came out with a for sure solution in AN surgery to get rid of tinnitus, I doubt if you would have any Wait+Watchers. Me for one! haha, Mickey
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hi patti,
no, the tinnitues got much worse after surgery!
Barely noticible on some occasions prior, really bad following surgery...might be slowly getting better. That or else I'm adjusting to it and hypercusis...
I didn't know you already had sugery, but if you're having translab in Jan I would wait for tinnitus treatment until after the surgery as it may change the outcome anyway. I've read where other people said they were better after surgery, but that doesn't seem as likely as it getting worse.
best wishes, melinda
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I had a great dream about a month ago. That I woke from the translab surgery and it was dead silent. I was estatic to have the tinnitus gone
Sounds like you died and went to heaven! That is the only way my tinnitus will go away, I've decided.
I take xanax .5 mg two times/day and it has brought it from a scream to a screach. My psychiatrist OK'd it, and it has been OK'd by the ATA org for treatment of tinnitus.
Maureen
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AN update since I started this thread a year ago. I had the Translab (second AAN surgery) in jan 2010. The tinniuts unfortunatley has gottne mych much worse. I really didn't think it could get louder, but it truly is ruining my life. I am still not sold on the Neuromonics idea due to being single sided deaf now. I did however find a program on line called Tinnitus Tamer that looks to be similar. You download it onto your computer and use it right on your computer with headphones. You can download it to an Ipod too. I just bearly found this and it'S only $35.00 so I figured, even if it doesn't work as well for 1/2 deaf people as it would for hearing folks. it's really worth the $35.00 to check it out. Just downloading it today. I'll let you know how it pans out.
the link is www.vavsoft.com click on Tinnitus Tamer
ALso, the book by Kevin Hogan, Tinnniuts, turning down the volume is helpful. He suggests using hypnotherapy which I am looking into as well
patti ut
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This sounds very interesting ..... hope it works for you. Be sure to let us know. I noticed there is a 14-day free trial period. However, I do not think that would be long enough to really assess whether it will work or not ..... it is doubtful (IMO) that the brain could be retrained that quickly.
Clarice
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Thanks for the info Patti.
Someone else asked if anyone had tried hypnosis for tinnitus (Maybe it was you? ;D)
I said no, but let me know if you do try it and how it works.
So ditto the previous sentence.
I'm fixn to get the BAHA soon and am told it "might" help the tinnitus, but am not keeping my hopes up.
Hypnoses sounds good to me........
I'm sure my husband will poo poo that idea, but no one understands unless you've been "there." The screechy land that never changes.
Hang in there ;) All we can do..Will be interesting if you try the hypnoses. It may seem like "grasping at straws" but like I've said before, hope is the only thing that keeps me going.....
Maureen
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The only good thing that I can say about my tinnitus is it quiets the voices. ;D
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Patti UT - I'm throwin' my hat in with everyone who's interested in hearing how your research turns out.
You GO girl! :D
Mark
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UPDATE,
I'm done with the 14 day free trial of Tinnitus Tamer, and I have to admit, I failed miserably because they suggest you use it 2-3x a day and I just didn't get to it enough. But for the $35.00 to have access to it indefinetely, I will attempt to be more diligent as we get into winter when I'm a trainwreck with headaches and hibernate anyway, so should have more time......
In the emantime, I tried a BAHA demo, AMAZING!!!. I did not notice the tinnitus as much in the deaf ear when I had the demo on. Still looking at the Transear which I kow won't be as good as a BAHA, but much less expensive and not surgery. The suggestion is that when the brain starts thinking it is hearing, it won't pay as much attention to the tinnitus
More later
patti
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I'm glued . . . ;D
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Got my BAHA today, round 2. The implant was already in the skull from the original brain surgery. They just screwed in the new one in the OR>
We'll see if this new improved one helps with the tinnitus.
Will let you know!
Maureen
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You know, just occured to me, these docs really need to chat with us about the BAHA before we go in for Translab surgery and install the darn screw at the same time. By the time the incision is healed the screw wold be ready to start using the BAHA.
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There are some Drs that will not do the AN & BAHA surgeries at the same time. I know that mine don't. They say that not everyone ends up liking their BAHA. My Drs prefer to have their patients use the tester first before they perform the BAHA surgery.
Syl
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Hi Everybody, I just saw this posting about Tinnitus today. My doctor told me to take less caffein as that is supposed to increase the tinnitus. He also said to listen to an iPod or MP3 player for 2 hours a day to alleviate the tinnitus. This kind of sounds like the Tamer but without a special program, just anything you want to listen to.
I also notice if I have a glass of wine the tinnitus gets worse unfortunately.
Mei Mei
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It always piques my curiosity when the discussion of tinnitus comes up. I have read a lot about what people have tried and so far, NOTHING seems to work. At best the screaming can be quelled to a dull roar. I look forward to seeing a discussion where one day someone says, I'm CURED!!! Until then I will keep monitoring these types of discussions!
Jay
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Syl is right. Not all doctors will do a BAHA implant at the time they do the AN surgery. My neurotologist does both procedures, but he will not combine them - and he's not alone in this. To my knowledge, this is just his personal preference (other docs will combine the surgery).
As far as BAHAs and tinnitus, having a BAHA implant has no effect on tinnitus. Won't make it better, won't make it worse. If you don't have tinnitus prior to the implant, the implant won't cause it. It won't eliminate it either.
Jan
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It always piques my curiosity when the discussion of tinnitus comes up. I have read a lot about what people have tried and so far, NOTHING seems to work. At best the screaming can be quelled to a dull roar. I look forward to seeing a discussion where one day someone says, I'm CURED!!! Until then I will keep monitoring these types of discussions!
Jay
I feel exactly as you do and hoping someday we can find relief ... Some people say you get use to it I wish I could say the same !
Best Wishes,
Pat
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Hi Everybody, I just saw this posting about Tinnitus today. My doctor told me to take less caffein as that is supposed to increase the tinnitus. He also said to listen to an iPod or MP3 player for 2 hours a day to alleviate the tinnitus. This kind of sounds like the Tamer but without a special program, just anything you want to listen to.
I also notice if I have a glass of wine the tinnitus gets worse unfortunately.
Mei Mei
Mei mei,
you need to have more than one glass of wine, that will take the "T" away....LOL
I have tried stopping caffine, ibupropin, wine, anything that has been suggested that add to tinnitus volume. It really doesn't seem to make a difference for me anyway. So I went back to my coffee & ibupropin for breakfast as that is the only thing that gets me going in the morning with the brainwrecks I wake with. After having a mid fosa that left me with severly damaged hearing which caused the tinnitus to increase dramatically, and then a Translab which caused the tinnitus to increase through the roof, I am convinced that the lack of hearing anything else in the deaf ear is what makes the T seems so much louder. I am hopeful that once I get a Transear, BAHA or something to make my brain start thinking that side is hearing, that it won't pay as much attention to the T. That's my theory anyway ;)
Patti ut
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Makes sense to me. I hope it works or anything you try works as Tinnitus is like a jail sentence...you can't get out!!!
Mei Mei
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Tinnitus is like a jail sentence...you can't get out!!!
You got that right, Mei Mei!
Patti, i will continue to post here to let you k now if the BAHA helps to buffer the tinnitus. I get the processor in 10 days (BAHA revision done this past Wednesday)
I was one of those who had the BAHA placed with the original brain surgery, because they knew I would lose my hearing. It was a nuisance actually, and my tinnitus was still pretty out of control, the thing wasn't working right after getting it "fixed" so I said "ah screw it for now" ;D and they simply removed the abutment. So you really don't know if it will work for you, plus my BAHA site got less attention than the other incision. Kept getting infected too.
I got an app on my "smart" phone for background noises- waves crashing, beach, storm, cars, etc....... Cost 1.99
I plug it in the good ear and just try to focus on the sounds of the waves or whatever (there's like 20 to choose from). I actually like the hair dryer mode!
If you have a smart phone, look into it:) Well worth the 2 bucks.
Hang in there all you tinnitus sufferers!
Maureen
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Some people say you get use to it I wish I could say the same !
I think that to a certain extent I've gotten used to the tinnitus. I wish it would be consistent, though. When I have a headache, tinnitus is at its loudest. It's hard to ignore it when it changes it's tune so often. Unfortuantely, I have recently gotten tinnitus 24/7 in my other ear. It's much quieter than in my An ear, but I can't help but get concerned even if I just had a stable MRI in June.
Syl
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Syl,
I also have tinnitus in my "good" ear. My last audiogram showed perfect hearing in THAT ear. That is always a concern for me too with the tinnitus in the "good ear."
I go for my 5 year MRI this summer.
When was the last time you had an audiogram?
Maureen
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I don't blame you for worrying about tinnitus in the "good ear". That was one of the signs the ENT looked for when I went in complaining about hearing loss and thought I had earwax or an infection. He asked if I had tinnitus and I said yes and he sent me for an MRI where the AN was first diagnosed.
It's worrisome to have tinnitus there and no hearing loss. What could be the cause of it? How to find out?
Mei Mei
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My last hearing test was in the summer of '08, some weeks after my surgery. I do think it's time for another one.
Syl
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I too have T in my good ear. It is intermittant, but has been mroe frequently lately. It freaks me out everythime I get it because I just can't bear the though of having it in both ears. It's loud enough in my AN ear to cover both ears thank you very much!
patti ut
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I agree with you that there's something to having a hearing aid to trick the brain into thinking we are hearing and we'll be like we were before surgery and the Tinnitus will lessen. I haven't seen this in the literature but will let you know after I search around. I did shoot this question to the TransEar Rep on the website and she wrote back that it's not supposed to help but some people report that it does.
I hope it does because it looks like that's where I'm headed someday.
Take care and let me know what you find and I will do the same!
Mei Mei
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My wife has complained for years about Tinnitus and she has no AN and no symptoms that she would have one. She also had an MRI about 8 years ago for another purpose and there was no indication. Her theory is possible inflammation, lack of sleep, lack of exercise, poor diet, sugar (she is also hypoglycemic), caffeine, alcohol (I hesitate to add, "you name it" but the phrase seems to fit) . . .
I don't know if any of the above is any help, but in the case that it is, well, there you go.
I think the point is that even though we who have ANs generally have the T, anyone else can have one, too. Therefore, to have T in our good ear is attributable to anything, not just the (or an) AN. Does that make sense?
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I can't prove it but I've read that approximately 15 -20% of the U.S. population suffers with tinnitus. That's over 40 million people. There is no cure (yet), the causes given are myriad and basically come down to guesswork, much like the supposed causes for the growth of acoustic neuromas. That AN patients usually suffer with tinnitus unilaterally or bilaterally seems as much coincidence as anything. While severe tinnitus can be debilitating, out of necessity, most tinnitus sufferers mange to adapt and deal with it. I'm one of the 'lucky' tinnitus sufferers; I have it bilaterally but it is mild and I can ignore it.
I should add that I drink 7 or 8 cups of caffeinated coffee every day and have never noticed an effect on my tinnitus one way or the other. In case anyone is interested - I sleep very well. Perhaps I'm atypical of most tinnitus sufferers but these are the circumstances surrounding my tinnitus situation. Evidently, every tinnitus sufferer has a noticeably different experience. For whatever it may be worth, this is mine.
Jim
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I agree with you that there's something to having a hearing aid to trick the brain into thinking we are hearing and we'll be like we were before surgery and the Tinnitus will lessen. I haven't seen this in the literature but will let you know after I search around. I did shoot this question to the TransEar Rep on the website and she wrote back that it's not supposed to help but some people report that it does.
Mei Mei
I know that I been trying in my mind to control tinnitus. But mind over mater doesn't seam to work for me. What does work. Is I still remember what it is like to hear a noise with both ears at the same time. And I'll play sounds with my MP3 player and then fake in my mind that I hear it both sides. And guess what. Tinnitus seams to lower by a good bit. But it does NOT completely go away.
I can confirm. Caffeine and stress make it worst and everytime I yawn its like level 9-10. Also before I sleep at night mine seams very load and that's when I start tricking my mind to get it to calm down.
I do NOT have any problems getting to sleep with it. I do have problems when its load and I can NOT hear other soft sounds.
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...a sneezing fit seems to light off my tinnitus. Kinda rings out for a few.....drag huh? Makes spring time very interesting. :D
For me when I'm very tired, or very stressed...the big "T" is front and center. Being dehydrated also seems to affect it.
Most of the time I handle my "T" like kids playing in the next room. You hear them for a while...but eventually it fades into the background. This works for me. BTW...did you ever notice that when you talk/type about it...it's loud and clear? funny huh?
Take care all...and happy Thanksgiving to you and yours!
Gary
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BTW...did you ever notice that when you talk/type about it...it's loud and clear? funny huh?
Kind of that mind over matter concept, eh? When I'm out and about I don't notice it AS much, but being indoors, at home, trying to relax, it comes screaming at me...
I am scheduled to get my processor tomorrow for my BAHA, (hopefully the site has healed enough). VERY interested to see how this will affect the tinnitus.. Fingers crossed!
Maureen
Happy Thanksgiving week :)
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My fingers crossed for you too. I will be thinking about you. Best of luck tomorrow!
Mei Mei :D