ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: dufreyne on January 13, 2009, 05:11:05 am
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I am 2.5 months post op from a middle fossa approach to remove my AN. The tinnitus has been pretty bad. I was wondering, for those who experience tinnitus (buzzing or ringing in your ear), what kind of sounds do people hear? Is it always the same? Do you have periods when there are 2 sounds at once? Does it make you dizzy? Also, for those with tinnitus, do you have any serviceable hearing in that ear?
Dufreyne--
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I am a little over 2 months post-op also and have very useful hearing on my AN side.
I had very mild ringing in my ear pre-op (high pitched tone). I could only hear it in the quietest rooms or when my ear was resting against my pillow at night. That's how I discovered my AN to begin with.
Post-op, the sounds range from hissing, a squeak-like sound when there's a lot of noise or activity around me (like in a bar, restaurant or at a party), a high pitched sound like before, a combination of them, to almost nothing at all. My ear also often feels congested a lot of the time. The volume and combinations vary from day to day and even a lot of the time during the same day. It rarely gets so bad that it's driving me crazy or anything, but it is there. I guess I sort of get used to it at times or don't notice it because of the TV, radio, and other white noise. I run a fan at night for white noise to help drown it out when I try to get to sleep, but to be honest, on most nights I would be able to sleep without it because it's not that loud.
The general pattern has been for very slow improvement. Yesterday was great. I hardly heard or noticed a thing all day. Today it's pretty bad for no reason at all.
For me, this is a secondary issue to wonky headedness and dizziness when I'm active.
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I can best describe the sensation as a "jet engine" at full throttle. It begin as hearing in the effected ear diminished and continued for about a year, gradually diminishing in intensity. By the time we identified the AN,I had no hearing on the effected side. That was my first clue that there was an issue to deal with. I am now almost 7 months post treatment and it has not reccurred.
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I have had crickets in my head for several years now. I still have useful hearing in both ears, the left ear having a hearing aid. It is fairly constant, though often I don't notice it, and it does not make me dizzy or anything like that. It is just my cricket buddies along for the ride. I surely hope that yours dampens down, it sounds like it is giving you some trouble.
Steve
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Lots of noise going on in my ears.My bad ear always rings thats hoe an was discoverded,other ear only rings when i lay down & is not as loud as my bad ear.tones change alot in bad ear from high to low to a flute sound lot of draining & unclogging.
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My ringing is of varying states. Sometimes it's pretty minimal, others pretty damn loud. The pitch changes here and there depending on what's going on (ie caffeine/alcohol intake, strenuous physical activity or being tired), and if I pay attention to it, like right now, I can "hear" multiple pitches at the same time, usually high and midrange type ring. Nerve is intact, but servicable hearing is nil as far as I know.
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Does the tinnitus get louder when you are in loud environments? Do droning noises like the washing machine or food disposal machine make it louder/worse?
I find that I can forget about it once in a while, bu most of the time it is with me and it makes it very difficult to concentrate. My doctor told me this should improve with time. He made the analogy to "phantom limb pain". Your body takes time to adjust to the new lack of nerve input to my right side.
Does that sound right to those with tinnitus?
Dufreyne--
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It does get louder in loud environments for me, but the sounds are different. For me, it changes to a squeak-like sound when there's a lot of activity around me (multiple conversations, a TV etc.. all at the same time). I do not know if it gets better or not because I am also only a little over 2 months away from surgery, but overall I think mine has improved a little. Funny you should bring it up though because yesterday and today have been louder for me.
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dufreyne,
When I begin losing my left side hearing, my ent told me to expect the tinnitus : and that in actuality, it would never really go away but my brain would "learn" to block it out and ignore those signals over time. According to him each of us is different and would have a diferent time table to accomplish this accomodation. He even went on to say that some never really made the accomodation and would have the tinnitus to some extent all their lives. In my case,the jet engine did shut down after about 12 months and has not returned. In its' place though, I sometimes suffer from what I call noise overload when I find myself in overly loud environments. That is easily handled though and I hope your struggles with the inner noise will improve sooner than later. Please keep us posted!
Richard
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My experience is the exact same as Choppers. Its fairly loud but doesn't really bother me.
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I sort of have a symphony in my head. Since 1985, I've had a steam kettle whistle in my AN ear. There was little hearing in that ear. It was gone completely after the Trans-lab a year ago. The other ear is a bit more melodic. Somedays I hear wind chimes, others I hear crickets. I wear a hearing aid in that ear to hear at all. And when I shake my head back and forth, I get the sound of a light-saber from Star Wars. It's interesting. As I have said in previous posts, you do get used to the sounds. They become a part of you. It's the normal people that I have a problem with -- especially the mumblers.
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I am 2 mos post op...and the ringing persists. Exposure to loud noises or extremely quiet environments tends to amplify the high pitch sound. Prior to surgery I found that distraction and physical activity became my way of dealing with the tinnitus...but now with continued limitations on my physical activity I am finding the tinnitus to be an annoyance. I have tried the background noises, and usually fatigue and a valium is my answer to a good nights sleep. The sound is always a high pitched persistent ringing that varies in volume. I have no serviceable hearing.
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I had a lot of tinnitus (crickets mostly but also white noise) immediately after surgery. This has gotten progressively better over the course of 6 months, to where it is hardly noticeable most of the time. And I have my hearing so there's nothing phantom about it. There are times when it is louder than any sound in the room but that usually passes. Good luck with it.
Best,
M
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it's helpful to read people's responses.. helps me put a name to my noises. i'm still pre-op (just one week away now). i have the symphony david described. crickets may be a good description, but they're not too loud. it's kind of high pitched white noise... but then, every once in a while a 'solo instrument' comes in and has it's own louder more pronounced tone. the background noise is kind of like listening to AM radio noise when you're trying to find a station. it's mostly something that i can hear anytime i want to (it's always there) but i seem to tune it out / live with it as well.
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I have no serviceable hearing in my AN ear. My tinnitus is like a constant hiss, I guess I'd call it. It started out small, and grew to a louder hiss and it stays about the same all the time. Sometimes it's louder, when something has aggravated it and then it's like a roaring in my ear. And sometimes it quiets down and is a softer hiss. But that's not as often as I'd like to to be. But, I'd like it to be gone, too, and that's not gonna happen, I guess. When I first had the tinnitus I could go into the shower and the shower noise would drown out the hiss and while I was in the shower, I had a bit of near normalcy. Now, I can usually hear the head noise while I'm showering. Once in a while I will hear other sounds, but mostly it's just this rushing hissing kind of thing. Maybe all the air in my head is leaking out! ;D
Sue in Vancouver USA
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Hello Sue,
Don't give it up so quickly. In my case, the tinnitus stayed with me for a year before it "left". Fortunately, it has not returned. I guess whoever makes those decisions felt like I had enough to deal with and so I have been spared that distraction. The fact that yours diminishes to a hiss would be encouraging to me. Patience and remember the motto of the marine recon units: "Adapt, improvise, ovrecome!" If they had not all ready claimed that one, it would be a great one for the AN community because that is what we are all about. I'll hope to hear good news from you in the future and am confident that you'll handle whatever it is that comes your way. Keep us posted.
Richard
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Oh I love that motto! We could put that on our official AN pirate flag. Cool. But I wouldn't want to make the Marine Recon people angry. Might not be a good thing.
Sue in Vancouver USA
PS. I've had this "hiss" for over 3 years, so I'm guessing it's attached itself to me and isn't going to let go. But, we can always hope. :)
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I have had tinnitus for about 2 years now. It sounds like crickets (not so bad...)
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Mine is actually worse lately. I hear what can be best described as squeaking sounds, especially when there's a lot of activity and noise around me. It's like my ear can't process all the different sounds from diferent locations properly and overloads. I've had it on and off since surgery, but lately it's worse and happens in more ordinary circumstances - which makes it tougher to deal with. ::)
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If you've ever been in an extremely quiet room (before your AN), and listened carefully you could hear a tone..mix that with a slight hiss...and that's what I hear in my AN ear.
It's worse when I'm really tired...
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(http://i436.photobucket.com/albums/qq87/bdcphotobucket/ANA-black-flag.jpg)
ARGH! Who's with me!?!? ;)
Brian
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I am !!
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You go Brian. That thing is magnificient. I'm sure there are others out there who may be able to come up with another version but you are first and have set a standard. I love it !!!!
Richard
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I hears these lil suckers!!!!!!
(http://i235.photobucket.com/albums/ee60/Captdeb_photos/AF422Tree-Frog-Posters-1.jpg)
Millions of 'em when I have a brainwreck or I'm really really tired. When I lived in the tropics I used to love the lil suckers but now I hates 'em!!!
AAARRRRR!!! I be wiv ye Pooter!!! A right smart ensign to run up the yardarm of the Princess Batty Wench indeed!!!
At the last symposium I took a giant jolly roger and hung it in the window of my hotel room at the Omni!! We need this one!! And we need T shirts of it too to wear--bet we could find some.
Capt Deb 8)
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Hi there Dufreyne: ~ 95% of the time I'm hearing cars swooshing through a tunnel, the sound feels like it originates right at my ear; the other ~ 5% is a sudden high pitched sound that lasts for about 30 seconds, then stops, & it feels like it's located dead center vertically at the back of my head. I have no hearing in the affected (right) ear.
So, that's my life with tinnitus ( I've had this for over 20 years, except for the high pitched sound, that happened after surgery, but I've been able to correlate the sound to dehydration; along with worsening balance as the beginning symptom of dehydration ).
Always good thoughts, Nancy
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Dufreyne,
Your level of tinnitus is by no means permanent belive me. It does tone down with time as things begin to seek homeostasis within your head.
Heal well,
Capt Deb 8)
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Hey, I am hear (no pun intended) to be the Devil' advocate. Two and a half years out of surgery. I have had Tinnitus for 30 years or more. After my operation my head from more noises. The frogs,crickets jet engine cars in tunnels and now pulsatile tinnitus. This is a swooping swishing sound. This usually happens late in the evening. If I get worked up or upset it kicks in. This has really driven me to my knees. I am speaking for myself and not any of you but my Tinnitus has never stop for a second. I have to remind my family how much it bothers me when ever we have guest over or family for the holidays. It's debilatating. It's a disease that has to classified as one so the Federal goverment to spend money for researse. I do not feel I will see that happen in my time. I do suggest that anyone with Tinnitus look up the web site <American Tinnitus Association.com>They need our help. Finally there is some light at the of the tunnel. One of our Senator in Congress has Tinnitus and is working on legisation for help to researse this terrible disablity. I have live with Tinnitus for over thirty years. Thanks and i hope to hear from you.
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So sorry you have had such severe tinnitus trouble. Mine has only started with the AN, but it is continuous also. It is always there, and I was rather saddened one day when I realized that the last sound I'll probably hear on this Earth will be that damn hissing in my ear. But, it isn't as horrible as yours, by any means. I honestly don't know if there will be anything that can be done about this affliction, but if more research is done, who knows what they may find out. In the future there may be some way of turning off the constant noise. That would be a blessing indeed.
Hang in there,
Sue in Vancouver USA
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Sorry to be the buzz kill but it's been over 3 years and my tinnitus has not changed. Mine is constant and does become worse with certain exterior noiises like washer and dryer sounds. If I spend just a short time in an area with loud talking or music the tinnitus increases to the level of that area. Unfortunatly the tinnitus level doesn't decrease until several hours after leaving.
The hardest thing to deal with when you talk about severe tinnitus is the emotional strain it can cause on you. Tinnitus is a stimulate no differant then hooking up an electrode to your finger and constintly sending a shock wave through you body. You may be able to deal with it for a short time but how do you think your body will react when you can't stop it? Some day when we are abe to measure how the brain reacts to tinnitus the medical world will understand the strength it takes to survive with it.
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Hello Ron,
I am pre-surgery still, but have exactly what you describe. Very loud tinnitus that gets louder when I'm in a noisier environment. Just like you, certain sound changes, such as a washer/drier or fan, will change my tinnitus level, but for me it seems to change the frequency a bit as well.
I understand fully the emotional strain as well. I have to have a LOUD fan running in order to sleep, and even then my sleep is never without interruptions. I do think I do ok with coping, but I don't bother trying to explain how bad it is to those that haven't experienced it. After all, we aren't looking for sympathy, and complete understanding is almost impossible without experiencing it. It's ours to keep, most likely, forever. I have come to accept that, and do what I can to "ignore" it.
Ernie
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You know, I was at the eye doctor about 2 years ago now, and we were talking about my AN, since he was interested. I told him about the tinnitus and that I had to have a fan at night, and he LAUGHED at me and said, "Well, I've never heard of such a thing." Can you believe that? I thought, well, you idiot, I hope you never have to find out. Then my evil side said, "yes, I hope you do." ;)
Sue in Vancouver
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I also sleep with a fan running at night!
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Hi Sue,
People like you eye doctor are idiots. I know it's hard to supress that little devil on your shoulder that eggs you on to wish they can share your experience, I think we've probably all felt that with at least one other person. Kind of funny from our side though when you think about it. Sorry your tinnitus is bothering you enough to need the fan.
Wendy
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Kinda nuts that a person needs the "white noise" to find relief from the "white noise" going on in the head. Strange but true.
Sue in Vancouver USA
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I don't know why, but sounds "inside" the head are detrimental to sleep while external sounds are soothing. Maybe it's just me though :). Any internal sound, like hearing myself breathe, or whistle through the nose, or even "heartbeat" noises keep me awake. The tinnitus for me came on suddenly, not slowly. One day I just had tinnitus. Sleeping with tinnitus is next to impossible for me. I have to have the fan, even if it's cold :).
I was reading last night with no external noises on (like the fan), and found that the tinnitus would pull me out of the story and back to real life. Very aggrivating, but If that's the worst it gets, I can deal with it.
Ernie
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Yep just try to survive. Frequent rest periods. Mine is 24/7 screech in the deaf hear, so I can't mask it with CDs. But I can sleep through it! I love my naps, I love my sleep. It's what keeps me going. I try to stay busy, and do best outdoors. Good thing my kids are older-2 in college and teen at home who is invisible. But unfortunately no one will ever be able to empathize unless they have experienced it. I am a nurse, and have tried everything. I also like my meds and have found that low doze xanax is THE only thing that will curb it. (went from a scream, to a screech, so life is bearable). Hard part is finding someone who will prescribe xanax. An addictive antianxiety. Docs don't like to prescribe it.
Maureen
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I am almost 3 year post-op, and the sounds are still with me. Sometimes they are loud & noticeable; other times I am unaware of them, especially when engrossed in something. The sounds do change. Sometimes at night it sounds like millions of crickets; at those times I picture myself out in the middle of nowhere, in front of a campfire & under the stars, and somehow that helps. At other times, the sound is just a constant mid-tone hum. Occasionally I will hear several "pings" along with the hum. The feeling of that ear being "full" is pretty much constant, with that feeling somewhat ebbing at times. But with all of this, the good news is that one can and will adjust to these things. The knowledge that we are blessed with the treatment available to us is immeasurable.
Kathy
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Hi Kathy! I`ve had my tinnitus half my life in similiar fashion (60yrs. old). I`m presently W+W. I did go thru Neuomonics which did help me by at least 50%. It`s my only symptom w/ very minor hearing loss. Even if you were to try some nice mellow music on a good set of headphones it may bring you relief. As for Neuromonics I definately reccomend but without insurance its pretty expensive. After the inital program of everday use for at least 6 mos. I now use it when my noise levels perk up and it seems to bring them back down to a very manageable level. Best Wishes, Mickey