ANA Discussion Forum
General Category => Hearing Issues => Topic started by: Monie on January 08, 2007, 04:54:15 am
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Hi again, beautiful people :)
Just wondering how you guys are faring with tinnitus (if you indeed suffer from this wretched complaint)? I began percieving tinnitus a few weeks before my diagnosis (Nov 06) and have found that my hearing is rapidly diminishing and the tinnitus (with equal rapidity) is getting louder. I consider myself a 'strong' person and generally can suffer through the day without it getting me down too much anymore but sometimes it honestly DRIVES ME CRAZY and makes me very depressed.
Does anyone have any ideas for management of this gross intrusion...I have heard of cognitive therapy and tinnitus retraining therapy but really know nothing about these activities - if you have any info at all it would be much appreciated :) I am currently waiting and watching until my next MRI in April - Sydney, St Vincent's Hospital, Australia.
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I would most of us have "T" (not everyone but most) .. I've had it for years... I just learn to cope with it ..
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I am lucky. The tinnitus does not keep me awake at night. If it did, I would try a tinnitus masker.
I am so used to it, it does not bother me anymore unless I am in a extremely noisy place. Then it roars.
It rarely gets better, and will usually not go away either. Mine is different than before surgery. Before it was a million different noises/tones......now it is one constant eeeeeeeeeeeeeeeeeeeeeeee but not loud enough to interfere with daily life.
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I have found that distraction is the only way to cope although I am exploring treatment possibilities with my health care provider, Kaiser Permanente. They do have a group of Doctors and audioligists that specifically evaluate T and try to prescribe a course of treatment.
I have been dealing with this in my "good ear" for about 5 years and since my AN was discovered about a year ago it has increased in the good ear and now is also in the AN ear. It is severly affecting my hearing. If I get any information worth sharing from my Treatment team I will pass it on.
Bev
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I have it in both ears since my surgery. I just read an article last night that taking melatonin daily can help with the tinnitus. Melatonin is a sleep aid drug that pilots can take while flying. I'm assuming it helps because it helps you sleep? Anyone tried it? I plan to only my melatonin bottle was empty last night LOL
Bev I'm curious to hear what you find out please share!
Monie...you mentioned your hearing is diminshing and your T is getting louder but your still months away from re eval. I had the same thing happen to me and by the time my re eval hit I lost my hearing in my an ear. Had the doc not have put off the mri and treatment I might have been able to retain some hearing. If I was in your shoes I'd not wait until April but start making calls now. If I knew then what I know now ;)
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HI Monie,
If your tinnitus is getting louder and your hearing is diminishing, I would push for an MRI sooner. Just to be on the safe side.
My tinnitus fortunately is of the rustling leaves kind, so not too intrusive. Loud enough of course to drive me nuts, but I got used to it now and don;t notice anymore, I had it for years, probably six years. You could look at the website fo the American Tinnitus Association, I think it's www.ata.org , they have good information on various coping methods. One I use is a CD with rain / shower noise, listen to it just above the level of the tinnitus and that masks it.
Unfortunately there aren't many things one can do about tinnitus other than training one's brain to not hear it. It gets better with time usually, depending ont he type of tinnitus you have. Some are easier to overcome than others.
Hope you'll find some solution that works for you, Monie.
Ciao, Lorenzo
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I've had tinnitus for about 10 years?? (left ear) but always attributed it to loud music (big AC/DC, Stones fan...). Starting out a small buzzing noise. It got to a point where hearing in left ear diminished where I could not hear a phone conversation using that side (recent testing showed I had appr 60% hearing loss in left ear). Wasn't until July '06 that I had a string of bad headaches which also made the tinnitus worse. Suffered paralysis on RIGHT side of my face while coming home from work. Thinking I was having a stroke, I went straight to the emergency room. A CT scan showed no signs of a stroke but was diagnosed as having Bell's Palsey, which paralysed the right side of my face. It also revealed a mass on the left side that was totally unrelated. An MRI confirmed an AN. That explained the tinnitus.. The Bell's Palsey eventually healed up for the most par... Dec 5 '06 went to the Mayo Clinic, had surgery, doing OK... They cut the hearing nerve but the tinnitus has actually gotten worse... It will eventually go away I was told in a couple of years... and to be honest I've gotten so used to it that it doesn't bother me, but i do avoid very loud noises (no more blasting the radio in the car). That actually flares it up and makes it very uncomfortable...
It took tinnitus, a rash of severe headaches, and Bell's Palsey to get me to have an MRI to find out I've had a 2.8 cm AN for they say I've had as long as when the tinnitus began... I was very lucky...I see tinnitus as a sign from the body to warn you that something is amiss... I'm dealing with it in a positive way so I don't let it bother me...
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Hi ntouras and welcome to the forum........
I ignored the tinnitus too. My mom always told me I would hurt my ears listening to music as loud as I did. I just figured that she was right, I wrecked my ear. ::)
Good to have you on and very good to hear you are doing well post-op.
Do you live in Minnesota?
Kathy
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Hi there:
Yup, had tinnitus for years before having it checked out, my mistake !!
Still have it post op, some days/hours are louder than others.
Like most everyone, you get use to it.
Best wishes, Nancy
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Hi all,
A newbie posting messages though I have read a lot of posts over the last 5 months... gathering info...
Did a lot of research on AN and realizing tinnitus was a major clue that something was wrong yet I never put two and two together until things came to a head.
I'm from the Chicago area and went to 4 differant specialists to get opinions (all in the Chicagoland area). Odd thing is I got 4 differant opinions from do nothing to GK to surgery to Gk and then surgery. It drove my family and I completely crazy.
We opted for Mayo Clinic as our 5th and final opinion, with Dr Link and Dr Driscoll doing the surgery. The whole time there was the best, not only for me but they took great care of my family which was more important to me... Highly recommended...
All the specialists agreed that the hearing would be lost either going the GK or surgical route...
I like to think of the continuing tinnitus as not an annoying thing but as just a reminder of how lucky I was...
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Hi all,
A newbie posting messages though I have read a lot of posts over the last 5 months... gathering info...
Did a lot of research on AN and realizing tinnitus was a major clue that something was wrong yet I never put two and two together until things came to a head.
I'm from the Chicago area and went to 4 differant specialists to get opinions (all in the Chicagoland area). Odd thing is I got 4 differant opinions from do nothing to GK to surgery to Gk and then surgery. It drove my family and I completely crazy.
We opted for Mayo Clinic as our 5th and final opinion, with Dr Link and Dr Driscoll doing the surgery. The whole time there was the best, not only for me but they took great care of my family which was more important to me... Highly recommended...
All the specialists agreed that the hearing would be lost either going the GK or surgical route...
I like to think of the continuing tinnitus as not an annoying thing but as just a reminder of how lucky I was...
thank you for sharing this and thrilled you are doing well. I know the tinnitus can be brutal to handle (physically and emotionally). I'm looking forward to attending the ANA Symposium in Philly this year as a major topic of discussion will be on Tinnitus.
I, do however, have to ask... in what I did in italic/bold in your post, I would like to know how the specialist agreed that hearing would be lost by GK or surgical. What type of "specialist" noted this and did they note to you percentages of potential partial or full hearing loss based on which treatments? I only ask out of curiousity as ..... many of us here try to educate our treating physicians with our gained knowledge, just as they try to educate us.
Thanks.
Phyl
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I just wanted to add to Phyl's question about the hearing preservation potential of surgery vs radiosurgery. It's been posted before but I think the it's important to distinguish that the primary difference between the quoted statistics for the two options is size. Both are fairly comparable at the small AN level ( less than 1 cm) but surgery results diminish as the size increases whereas radiosurgery does not. In other words, disregarding the FSR vs. GK 1 dose discussion for a minute, Hypothetically, if radiosurgery hearing preservation is 75% at 1 cm , it is essentially that at 2 cm. On the other hand, surgery may be 75% at 1 cm but drops to maybe 25% ( which is what I was quoted) at 2 cm.
Not really a tinnitus issue, but reaffirms the need to really challenge Doctor quoted statisitcs on occassion
Mark
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One other aspect to remember is the level of hearing present at the time of treatment. If it just boderline useful in terms of voice recognition (like in my case, -70%) then either GK, CK or surgery will not 'help' much. The loss of an extra 5% of my hearing after CK just made it that bit more useless, thus for all intents and purposes I have lost my hearing on my left side.
Lorenzo
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In my case I had less than 40% hearing in my left ear with hearing getting worse over the last couple of years. The specialists who felt GK was the way to go, all felt that hearing would be lost over a couple of years based on the size of tumor and the quality of hearing I currently had and based on their own experience.
In the case of surgery the main concern for me was removing the tumor without damaging the facial nerve. I just wanted it out... The surgeons all felt that the hearing nerve would be gone... My feeling was to save the facial nerve(which they did)... I was content without the hearing... but that's me... You should get all the information you can from any specialist you deal with and ask them bluntly how many people they dealt with lose complete hearing... Again my hearing was going downhill fast so it came as no big shock for me... unfortunatley I still have the tinnitus even though the hearing nerve is gone... That will go away over time or so I was told...
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I had PERFECT hearing in both ears prior to surgery. My sister used to call me Jamie Somers (the Bionic Woman) because she claimed I heard everything.
During my hearing test, when I was in the little soundproof booth with headphones on, I asked the technician what that ringing sound was. She said it was her cell phone, in her purse, on the far side of her office. She said, "I guess you don't have hearing loss."
Now, I'm completely deaf in the left ear, and the tinnitus is sometimes overwhelming. Especially in loud, busy places. And I'm bothered by all kinds of sounds, like traffic, fans, refrigeration units in supermarkets, lights buzzing, clocks ticking, household appliances humming. As many of you have noted, parties and restaurants are often unbearable, too. And high ceilings seem to make the sounds ricochet.
And the tinnitus......................Can't wait to get into a quiet room which, oddly enough, lessens the tinnitus.
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I don't know how but i have learned to ignore it. Mine is like Obita's just a eeeeeeeeeeeeeeeeeeee sound. I wish I had a great and wise answer to give you. When it starts to bother me I just tune it out somehow. I probably have been dealing with it for years and didn't even know I had it until after my AN was removed.
Yes, I used to be, and sometimes still am, oblivious to my health needs. :'(
Denise
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Yes, the quiet does seem to lessen the tinnitus. When I am given a hearing test in that sound proof booth, it isn't the same as trying to hear in the loud places which is why it annoys me that they go by the information they get from that test. My hearing really isn't that good, I'm hardly ever in a place that quiet unless I'm alone. I guess we live in a noisy world. The "T" is also worse with the weather, just like the headaches.
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I have tinnitus in the good ear also. It showed up just before my surgery. I thought it was bad enough on the AN side. I now deal with the noise at two different levels and sometimes different tones. I asked about it and got a shrug. Any help would be great.
Charlie
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Sorry to hear that you have that nasty "T".
I too have the "T", even after surgery but a lot less.
I have learned to deal with it. I did the wait and watch for a couple of years and decided to go have the surgery done.
Mine is a steady high ring 24 - 7, which was causing high freq loss on the AN side. I had lost 15db on AN side in a year.
It's no fun having the "T", but the brain does what it wants to do.
Good luck on your decision, and may the "T" go away.
Kenn A.
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Bell's palsy can be caused by Lyme Disease. You might want to get checked out for that. Good luck.
I've had tinnitus for about 10 years?? (left ear) but always attributed it to loud music (big AC/DC, Stones fan...). Starting out a small buzzing noise. It got to a point where hearing in left ear diminished where I could not hear a phone conversation using that side (recent testing showed I had appr 60% hearing loss in left ear). Wasn't until July '06 that I had a string of bad headaches which also made the tinnitus worse. Suffered paralysis on RIGHT side of my face while coming home from work. Thinking I was having a stroke, I went straight to the emergency room. A CT scan showed no signs of a stroke but was diagnosed as having Bell's Palsey, which paralysed the right side of my face. It also revealed a mass on the left side that was totally unrelated. An MRI confirmed an AN. That explained the tinnitus.. The Bell's Palsey eventually healed up for the most par... Dec 5 '06 went to the Mayo Clinic, had surgery, doing OK... They cut the hearing nerve but the tinnitus has actually gotten worse... It will eventually go away I was told in a couple of years... and to be honest I've gotten so used to it that it doesn't bother me, but i do avoid very loud noises (no more blasting the radio in the car). That actually flares it up and makes it very uncomfortable...
It took tinnitus, a rash of severe headaches, and Bell's Palsey to get me to have an MRI to find out I've had a 2.8 cm AN for they say I've had as long as when the tinnitus began... I was very lucky...I see tinnitus as a sign from the body to warn you that something is amiss... I'm dealing with it in a positive way so I don't let it bother me...
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Tinnitus is probably the WORST post op symptom I have to deal with. Even worse than the brainwreck headaches. I had it for years before my diagnosis, but it got much wors post op. I try not to think about it but it's always there, LOUD AND CLEAR!
It really stinks, but what are ya gonna do but deal with it.
Good Luck getting used to it. SOrry you have to.
Patti UT
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Hey Patti: I'm just the opposite - Give me tinnitus over headaches any day of the week !!!
(Not a friend of pain)
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Amen to that nancyann! ;)
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I just read an article last night that taking melatonin daily can help with the tinnitus. Melatonin is a sleep aid drug that pilots can take while flying. I'm assuming it helps because it helps you sleep? Anyone tried it?
I tried it, it did nothing for me except help me fall asleep faster. :D It's supposed to tell your brain to go to sleep which should lessen the tinnitus. I guess it works for some, but not everyone.
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I have ringing starting just after I noticed a slight hearing loss. Since middle fossa surgery the ringing is terrible. I hate noisy places. Right now, as I sit quietly the noise is unbearable. I can't just get use to it and it's been a year since surgery. In the early evening it seems worse especially after a long day at work. I am not a wimp and hope for the day I can say I don't notice it.
Darlene
5 mm by 8 mm
House Ear Clinic
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Two of my neighbors have bad tinnitus! They are both in their early sixties. Neither has an AN. Its inevitable that stuff happens. :(
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Thank you to all of you, this is my first post however you have all helped me out alot since my Middle Fossa surgery by Dr. Daniels on December 8, 2006 in Grand Rapids, Michigan. I've been sitting quietly on the side-lines learning from all your experiences.
What I'm wondering is...before I went back to work on January 23rd my hearing and Tinnitus was gradually improving, actually my Tinnitus was almost gone. As I have been getting back into the stressful work environment my Tinnitus seams to be getting worse. I'm wondering if I'm over tired or too stressed which may be bringing on these symptoms? Has anyone else experienced this?
Once again, thank you for all your helpful comments that got me through my recovery.
Beth
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I was the same way .. my "T" when down after surgery. The day I started work .. right back to were it was before surgery . >:(
My thoery is the "T" is closely tied to blood presure .. any thing that shoots it up .. and up goes the "T"
now all I have to do is hit lotto so I care quit work .. and make a big ANA donation :D
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Hi Beth: My tinnitus doesn't seem related to anything - it gets louder at times regardless of what/where I am,
if blood pressure is low or normal
Geuss it has a mind of it's own.
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Beth,
Is your workplace noisey? My tinnitus worsens whenever there is any kind of noise--fans, refrigeration units at the grocery store, humming office equipment, thumping music, ringing telephones, fluorescent light buzzing, running water, appliances, passing cars and trucks, motors of any kind, loud or many voices, echoes in empty rooms or rooms with high ceilings. Anything. I just always want to go home where I can minimize the noises. I even carry an ear plug with me which I use when needed.
"Normal" people do not notice the noise level, and are not bothered by it at all.
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Hi guys: I posted 2/20 under AN comm., TV flavin..: Dr. Telischi did a talk on Tinnitus &, unfortunately, there is NO ABSOLUTE cure.
If anyone wants to look at the 'slides', you can go to Google, put in: miller school of medicine, & click under Departments..;
then scroll down (on the left you'll see) & click on Otolaryngology. Then, on the left hand side at the bottom you'll see
Grand Rounds. click on that, then the 1st one, Tinnitus 2/17/2005, click & you'll get the slide show.
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I've been learning to meditate over the last couple of years. I know it relaxes me but intersestingly, since surgery, it actually helps to turn the volume down on the tinitus at night.
When my head is filled up with stuff from work and I am trying to sleep, my tiniutus is nuts. I do my normal meditation stuff -- visualize a loving light of the universe come gently in through my head, down through my body and out my toes. I concentrate on the steady flow of light through my body while breathing in and out evenly checking and relaxing each muscle. It turns the volume down for me just like turning a nob on a radio. As soon as my thoughts go back to work then the volume goes back up.
When you are at your wits end, get some tapes or a book on meditation and give it a try! I have found it remarkable.
God Bless,
Crystal
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Read through all of the "T" stories and have nothing to add, but I have a question regarding what is causing my tinnitus in my contralateral ear. I had surgery 2 years ago January to AN on my left. I am deaf in this ear and one year later the tinnitus began in my good ear on and off. It now is constant with pressure changes, popping, heart beat pulsing/sound while lying on that side and just recently my TMJ joint on my right side is beginning to hurt on and off. Wondering if this should concern me enough to make a call to my surgeon or just wait until MRI at the end of this year. I was told by another Otolayringologist the ringing in my good ear is due to ibuprofen use for the headaches. Can't say I agree as my NSAID use is not excessive. He never addressed the other issues though and silly me, I forgot to remind him. As my husband teases me it was a "dee dee dee" moment (for those of you who have seen Carlos Mencia). Anyway, just thought I'd put this out there to see if anyone's doctor mentioned NSAID use as cause to ringing in contralateral ear.
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Hi,
I was wondering if the neurologist ever got back to you with the results?
Jen
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Along with my AN, I also have Cochlear Hydrops ( a form of meniers disease). Tinnitus drove me crazy before cyberknife. After treatment the pitch changed and it was more managable. I have learned from the Meniers site that a protacol called John of Ohio's is helpful to some with tinnitus and/or dizzyness. (I don't have the vertigo that goes with Meniers so it is CH). It does not work for everyone, however, it does with some and I can say it has helped me. It is not quick acting and takes around two months to even start to show any results. Google John of Ohio and see the protocol.
Sandy
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Does anyone have any ideas for management of this gross intrusion...I have heard of cognitive therapy and tinnitus retraining therapy but really know nothing about these activities - if you have any info at all it would be much appreciated :) I am currently waiting and watching until my next MRI in April - Sydney, St Vincent's Hospital, Australia.
this link should should provide the info. you are seeking. Out of Australia too.
http://www.abc.net.au/rn/talks/8.30/helthrpt/stories/s232.htm