ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: Dusty on May 29, 2009, 08:51:27 am
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I had tinnitus in my AN ear before surgery and now 2 1/2 months after surgery I am still suffering from tinnitus in my post AN ear. The doctors tell me this is a phantom ring since the nerve was cut. Has anyone else had this phantom tinnitus and does it ever go away? Need to figure out how to deal with this if it is going to continue.
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"phantom ring"
I was told this too. I have had no change since surgery almost 2 years ago ... but maybe others might chime in here that did have a change.
I find when I wear an ear plug in the good ear, as a filter, I can control the tinnitus from the "dead ear".
DHM
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I have it also and for some reason I'd accepted it that I would have it forever now, I don't remember if someone told me that? I would love for it to go away! When I went to my follow-up I asked the Dr. if the earwax would still work its way out on its own and he said that the ear and all parts are still intact, just that the hearing nerve was cut, so it would do its job. All that to say that maybe I'm not actually "hearing" the tinnitis as I am "feeling" it??
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Hi Dusty,
I had slight T before surgery in '04 .... and now big-time T since. I try not to let it rule my life by being involved in as much as I can in many other things.
Suggest you seek lotsa info about it on this forum and other places (e.g. Am. Tinnitus Assoc: www.ata.org , and Kates's website http://anworld.com ). I also hope that sometime in the future, medical science will find cures.
I wish you well as you learn more about it.
Greg
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Oh, I am so hoping someone chimes in here and says "Yes, mine went away." I had only slight tinnitus pre-op and only mild immediately post-op. Now it seems to be much worse than ever. Most of the time I can successfully block it out, or at least divert my focus. In a place with much ambient noise (restaurants, places with background music, etc.), the tinnitus becomes much worse.
I'm with Greg that I hope someday medical science will find a cure.
Clarice
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Thanks for the feedback. I do use a sound machine at night that helps with sleeping and I have learned to somewhat deal with it during the day with 'mind control'. I was so hoping and was somewhat led to believe the ringing would go away if the nerve was cut. This will not rule my life but it sure would be nice if my head was quiet for even 5 minutes.
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I had tinnitus on the AN side prior to surgery. Post op it seems stronger. That could be because I still had some hearing on the AN side pre-surgery and have zero after....maybe the tinnitus level is the same, but since that's all I hear over there now....maybe it just seems like it's louder.
While I don't believe it's "phantom", I do think it is at least part mental....If I think about it, yes it's bothersome. However, I've learned to mentally block it out 95% of the time.
Patrick
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It was the sequence of events initiated by my tinnitus acting up that lead to the discovery of my AN. So I guess my annoyingly constant companion for the last several years proved to be at least a little useful.
It was explained to me by an ENT that all tinnitus is a "phantom" type of noise. The way he explained it was that the aural decoding section of your brain demands input. When you have reduced input from your ears, for whatever reason...it sometimes starts to "make up" it's own input to keep it busy. Kind of a 'the devil makes work for idle hands" type of event. My understanding was that there really isn't any "noise" just brain activity that we preceive as noise. This is very much in layman terms but it does help explain why those with no intact acoustic nerve would still "hear" sounds from that side of their head.
The www.ata.org website does have some suggestions about factors that can make tinnitus worse, and conversely the elimination of those factors can sometimes make the perceived noise less. A difficulty though is that finding the things that make your personal case of tinnitus less loud could take quite a bit of experimentation and giving up some things you really enjoy or "need", such as caffiene. I know not what course others may take, as for me..give me coffee or I'll be a real grump-ball.
Although I've lived with tinnitus for many years, mine did get noticibly louder post-op... I just cranked up the ignore and cope levels of my psyche. Some days I need a "This is Spinal Tap" type of mechanism where the numbers go to eleven instead of ten.
..take care.. tim b
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My understanding was that there really isn't any "noise" just brain activity that we perceive as noise.
I think that is the key thing to understand about tinnitus: there is no sound. It seems to me that if I point that out to myself emphatically, it helps my brain ignore it.
Except when I am thinking about it, of course. ;)
Steve
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Dusty -
I don't suffer from tinnitus, but it seems to me from what I've read on the Forum that those who have it pre op generally have it post op.
Surgery doesn't seem to have any effect - either negative or positive - on tinnitus.
Jan
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My T went away post surgery. I commented on this on another thread. I was so use to being serenated at bedtime, now the lack of noise is weird and I miss my bubbling brook and singing crickets. Pre op my T was there loud and clear but not to annoying.
JO ;D
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Unfortunately, mine is high shrill 24/7 which I can't seem to mask. It is as if it fills my whole left side of head >:(
I was reading on the ATA website, and there was recently a walk, organized by a woman who had an AN removed and suffered severe tinnitus on the affected side.
She is probably still on the opening page.
I made a donation to the cause and plan to follow along through the years, hoping for some sort of medical breakthrough. Please! :(
Until then, I just plug along and go outdoors as much as possible which seems to help.
Maureen
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Try an earplug (one that does not block all the sound but more filters it- such as the Rite Aid generic brand that is purple) in the hearing ear ... see if you notice a change.
(My tinnitus is responsive to sound - such as fans ... my husband's deep voice... the worst being his snoring ;) so at night I do not wear an earplug just I put my good hearing ear to the pillow :D).
No really- give it a try and see if this helps.
DHM
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I also discovered AN due to annoyance of the constant ring...i'm one year out & its still going strong i even have it in my good ear now.Most days i do not notice it but others it gets loud.
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I do notice that an ear plug in the "good" ear helps to buffer all the extraneous noise, and thus prevents the rise in intensity of the "bad" ear.
But it's still pretty bad:(
Maureen
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I had insignificant tinnitus prior to surgery for a right sided AN. During surgery the hearing nerve was completely cut on the right side but the tinnitus on that side was made far worse ! It is still the same 20 years later. I also get some tinnitus on the left side but it comes and goes. I have got used to it luckily.
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I also had slight tinnitus pre op and it became much worse post op - very annoying, even after seven years but I have learned to count my blessings and try ignore the shrieking. It is much much worse in large crowds so I try seek out quiet environments....kind of hard when my boys have friends over....sigh...
Cecile
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Hi,
I also had tinnitus pre-op and it's still there three weeks post-op. Post-op I will say i hear it more, but I think it's because I'm SSD now. But thank God it's not worse than pre-op so I'll handle it if it doesn't get worse :) I hope you learn to ignore your tinnitus as well.
Best to you from Helene
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Dusty:
I feel your pain. I only had 2 short bouts of tinnitus before surgery and now it is nearly constant. Although, there are times that it decreases to such a mild sound that I hardly notice it. I am 7 months post-op from a middle fossa resection. My tumor was 9 mm in size and completely intracanicular. I lost all hearing in that ear. I am starting to notice some patterns. For example, when I'm tired (not just at the end of a typical day, but when I'm physically or emotionally exhausted), the tinnitus seems to be worse. Also, if I have too much caffeine the tinnitus ramps up. I'm still looking for more patterns, but that's what I've noticed thus far. In some ways, it is like the canary in the coal mine, when my tinnitus is getting loud, I know I need to take a time out and consider resting or quitting for the day. There are some situations that do not allow for that--for example, I occasionally work through the night and by 0430 AM, my tinnitus is pretty loud, but in other situations, I need to make a conscious decision to rest.
Also, plugging the good ear for 60 seconds does take the edge off it. I usually do this as I also think of something calm.
Good luck.
Dufreyne--
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I'm 5 mths post surgery. I too have this problem. I too find that using a filter in your good ear, foam plug or wax helps cut down on the noise. I try not to concentrate so much on it.....it's hard though. I've been trying to find some music that helps. I'll continue to read here for more suggestions.
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Hmmm. I didn't suffer at all with this prior to surgery. When I woke up from surgery and had this very loud, the ENT surgeon told me not to worry and that "since you didn't have it before surgery, it'll go away". I'm only 3 wks out, but I'm still "waiting". :-)
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Adrienne,
Give yourself time, dear. 3 weeks out is still fresh post op.
Is your hearing affected from the surgery? That may affect what you hear as tinnitus. Hopefully the doc is right. There is still a lot of swelling going down in there, I suppose.
Also it took me 6 weeks to get rid of my headaches, but they are gone.
Sounds like you are doing fantastic!
Maureen
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I had fairly loud and multiple tones pre-surgery. I noticed immediately as a postie my tinnitus is a now a single tone and much lighter. So far (5 days) its constant at that level.
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Oohh, Bob you are one of the Lucky ones!!!!
Maureen
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Adrienne,
My tinnitus is not as loud as it was prior to surgery approx. 5 weeks ago. According to the Dr. it will never go away. If I stay active I don't notice the ringing. Also other background noise tends to help.
Take Care,
Ron
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Hi. I had a slight ringing in my ear prior to my surgery, but it is definitely loader now. My Drs have told me that tinnitis is a result of hearing loss - that the brain is looking for sound in the absence of it. My ENT recently told me that a hearing aid might mask it, but I haven't gotten one yet. Eventually I'll break down...