ANA Discussion Forum
Archive => Archives => Topic started by: SKT on December 25, 2005, 09:08:17 am
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Hi. I am new to this site. I am 2 years post-op. I had a 3.3cm AN compressing on the brain stem. I was never a stranger to headaches over the years, but I never thought they were anything out of the ordinary. The symptom that prompted me to see the doctor was very sudden, loud tinnitus that came on one night. It completely freaked me out. It didn't stop. I found I couldn't concentrate at work, at all. I really pushed the issue, got myself referred to an ENT surgeon. 2 weeks later an MRI disclosed the AN. I had it removed 3 weeks later, translab approach. My hearing was remarkably good pre-surgery, never noticed a drop in hearing. I am now deaf on the left side. My tinnitus is much worse than it was pre-op. I thought that it would improve over the course of a year, but now 2 years down the track, it hasn't improved at all. I've never really raised it before, as I just don't want to complain - I have always felt so lucky and grateful that I came out of the surgery so well. Extremely happy to be alive and well; I think my surgeons are just amazing.
However, I figure this is a good place to discover if there is anything anyone has found to alleviate their tinnitus. Mine gets extremely loud when I'm in a room full of people chatting, when i'm tired, after a bit of alcohol and when i'm sick. I get this awful pulsating type tinnitus sometimes - only ever at night - it's like a loud, high pitch pulse - almost like you can feel your blood pumping away - it's quite painful. I can't fall asleep until it stops.
If anyone has discovered anything that helps their tinnitus, I would be most grateful to hear from them.
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Interesting that your tinnitus started suddenly one night. Mine did, too. In fact, it woke me up when it started.
I have not had surgery yet, but am scheduled for late January. I understand that the tinnitus does not go away and I hope that it won't get too much louder. I still have some hearing in my AN ear and that seems to aggravate it now.
I have found that having some kind of sound - not loud - like background music or other "white noise" seems to mask the tinnitus for me. I have also used a pair of Bose noise canceling headphones and gotten some relief, but am pretty sure that this will no longer work when my AN ear no longer hears at all. I also find that sometimes I kind of forget about it. I believe that my mind is figuring out how to ignore it. This after about 2 weeks of it.
This may not be much help, but I did find a web site for the American Tinnitus Association that might have some tips. I haven't spent much time there yet, but you may want to check it out. http://www.ata.org/ Also, stay tuned for more posts - I am certain there are other folks dealing with this with a closer match to your situation.
Sanddollar
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Sanddollar: Tinnitus can and sometimes does go away. I had tinnitus for many years before my diagnosis, gradually getting louder. After my surgery, it was gone! It has come back lately(7mo. post-op), but much less and not nearly as loud. So there is hope! Stay positive!luv2teachsped 8)
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luv2teachsped -
Thanks for the bright note on the tinnitus! I had kind of given up on ever knowing silence again. Funny how one can become deaf in an ear and end up with "noise" in it. AN throws us the strangest curve balls, no?
One cannot quite understand the tinnitus unless they have experienced it. It can be very distracting, particularly at first. I found myself struggling with my voice volume when I would speak to people, as I wasn't certain if I was speaking too loudly, trying to overcome the tinnitus I was hearing, but they were not. I can see where if it were much louder that it could really make life difficult. I wonder if hypnosis could train away one's consciousness of it.
I hope that yours goes away again or remains low volume. In any case, a positive attitude and a sense of humor seem to make all of the difference. I intend to hang on tightly to both throughout this.
Sanddollar
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I never had tinnitus before AN surgery. Mine developed suddenly around 2 days after surgery and has been here now for 7 years. It is a constant 24/7 high pitched buzz/bell ringing and  it gets louder and more high pitched as the noise level around me increases. My doctor tells me that it is a result of the hearing nerve being cut/removed and is now picking up stray signals from the brain.
SKT mine gets more aggravated when I am stressed and tired as well. My head pulsates on my surgery side when I have been reading too much, stressed, working outdoors or exercising and alot of times chewing my food.
My doctors don't seem very concerned about any of it, but do sympathize that it is very annoying. Luckily most of the time I can override the buzzing, except when I am in a room full of people or at the movie theatre. I have to say that at 7 years out, I have become so used to it that I really don't notice it.
Now, if I could only get the bell ringing/buzzing to play a tune once in a while, than that might be nice.
matti
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Sanddollar, thanks forthe response - I agree with luv2teachsped - there is every hope that you will not have tinnitus post surgery - everyone's experience is different. Even if you do end up with it - you'll be fine as you have a great attitude. Goodluck with your surgery - You'll be in my thoughts - let us know how you go.
Matti, thanks so much for your post - it is comforting to hear that other people get that pulsating tinnitus as I really hadn't heard anything about it until I experienced it. It's quite different to the normal tinnitus - it's like a pounding in your ear. Really freakied me out at first.
I agree- would be great if the tinnitus could get itself a rhythm every once in a while. Thanks again for your post.
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I am just 20 days shy of being 2 yrs post op and my doctors also told me that the tinnitus would lessen as time went by...... one can only hope. It's just the same, if not worse, as the day after surgery. I also get the pulsing tinnitus and the noise around me makes it worse. I have a horrible time trying to hear in a crowded room not just because of the single sided hearing, but also because of the buzz saw that is constantly running in my ear! Some people just don't understand how difficult it can be to hear with single sided hearing and how very frustrating it can be. I feel like a broken record constantly telling people I can't hear them and asking them to repeat themselves... it's either that or just pretend I heard what they say :-\ . My husband got me tickets to a Billy Joel concert for Christmas. I think it might help if I use an earplug so the music isn't so loud that it will make the tinnitus unbearable for days! Single sided hearing does have it's perks though, no more snoring husband keeping me awake at night LOL! I have to say that I am starting to get used to it, but it isn't making the hearing any easier. Sorry but I haven't found anything that makes the tinnitus lessen but if anyone does, please post! Hope everyone has a happy and healthy New Year! Hang in there!
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Hi Static. Thank you for your post.It feels so good to hear someone else describe exactly how I feel. I've not communicated with any other AN patients since my surgery 2 years ago. Although I'd hate for anyone else to have this narky tinnitus, it does make me feel sane hearing someone else describe exactly what I experience. I'm in fact up late right now because that horrible pulsating tinnitus is playing up, refusing to let me sleep...
The ear plug at the concert really will help. I have used it at a concert, and found I was very comfortable - it works really well.
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SKT: I am 4 years post op and have tinnitus that is always there. I have a friend who is a retired heart surgeon and has tried helping me with medications. I have tried anti-convulsion meds with little success. I also have tried Zoloft which is an anti depression med. It helps with the hig pitch pulsing and with eye movement related noise. All of my symptoms get worse when I am tired, in a loud enviroment. If I forget to take the meds I do notice a difference in the level.
kevins
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Thanks for the post Kevins. The surgeons i have seen have suggested that nothing helps? Do you notice a real difference in the level with the meds?
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Hi I also had and still have on occasion the type of tinnitus, pulsating, shrieking, extreme when a sudden noise occurs, and sometimes it is making a white flash of light in my eyes a bit like lightening (when a spoon fell on the floor was the first occasion when this happened. being tired, frustrated or scared/worried do increase the volume, eating too rich a meal does it too as well as drinking any sort of alcohol, one glass of wine can soar the volume, a few drop of liquor do the same, coffee should be decaffeinated and sugar, cakes, and soft drinks will increase the volume somewhat and it is easy to learn what does it as it is almost immediate
So, for me, more veggies than meat, only one egg per week, and drinking a lot of good water. Relaxation can lower the volume of tinnitus, and I am trying to find the "biofeedback" way to control it as I heard 2 years ago a AN patient from Florida tell me. She also told me her brother has cured his high blood pressure with biofeedback. I wish my computer had not crashed a few weeks later, I have lost all addresses.
Good luck
ant
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Thanks antoinette for all the tips. I really should cut out my coffee - i still have one or two a day.... Why do you think meat spurs it on - have you just noticed that it does?
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Sanddollar I just got lectured, scolded, ridiculed heck I'm not even sure what to call it for talking too loud in a noisy resturant today. The person I was talking too said I wasn't too loud. I don't know if it's because the speaker with blaring music was right over out table or what. I am deaf on my left side with high pitched tinitus in both ears so I know I have trouble with volume control.
I tried to be hyptonized before I knew I had an AN but was unsuccessful...wonder if the AN had anything to do with it? ??? :o
Antoinette interesting info thanks for sharing :)
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Hi I also had and still have on occasion the type of tinnitus, pulsating, shrieking, extreme when a sudden noise occurs, and sometimes it is making a white flash of light in my eyes a bit like lightening...
This perfectly describes my experience with tinnitus. Had a 1.5cm an removed via translab on Jul 30, 2003. Had mild tinnitus before the surgery but the noises above started within a few months after it. I too have problems in loud places such as restaurants, the tinnitus is much worse in those environments. My only solution is to get out of there. At home, I go lay on the bed, turn on a fan and meditate, that usually works.
Rick
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Thanks for the ear plug suggestion. My husband loves live musical performances. I shy away from them because it increases the volume of ringing. The aftermath is not worth it. Ear plugs sound like the solution.
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Yes....I concur with everyone!
I have it at this very momonet. Strange how we can have such incredibly loud tinnitus in an ear that has no auditory nerve left in it. Do you also get that pulsation from the blood flow pounding in your ear / head?
Paul
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Yes - I have a constant pitch/wail at 5,000 Hz - sounds like a very top "C"
Interestingly, if I shut my eyes the tone changes slightly
(face nerves effect sound ?) Yes - its nerve breakthrough of some kind
I think fatigue or stress makes it worse - and poor blood sugar levels
I tend to avoid places with loud background noises
I would try all the suggestions on the list and check out which is best for you
best regards
Tony
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mine's more monitone/ringing, much more prevelent now since my CK, in my left ear. Right ear has finally calmed down post-treatment. I get the "pulsating" more at night, when I'm tired... I need a "*spork" :)
*has anyone trademarked that term yet?*
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Crazykat - i do think the pulsating is partly hearing the blood flow in your ear/head.
I also find that it is so much worse when I am tired or stressed.
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Yes SKT!
It's weird. Sometimes I'll wake up from a deep sleep and it will be there - like a dull thunk......thunk......in my head / left ear. Then I'll get up and go out jogging for a couple of miles and it goes way. I have an Omron blood pressure monitor. I've stopped taking my blood pressure because it's always normal.
Paul
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Tony - I also notice that when I close my eyes or change head position my tinnitus will either increase or decrease in tone. ???
Cheryl
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OMG, I've never noticed that!!!! The pitch does go a little higher when I close my eyes. Either that or you guys are messing with me. Sometimes mine all of a sudden will sound like I've stepped into a fishbowl. It gets echo-ey. It only lasts for a few seconds, then that stops. i can't pinpoint anything that precipitates that occurring.
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Gennysmom - I know it's weird isn't it?? I can fluctuate the sound just by blinking. Who knew you could have so much fun with AN's :D
Cheryl
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If we all joined together, we could have a whole brass band inside our heads. That would be so interesting if there was a device that could project that sound that you're hearing so that others could hear what you're hearing.
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Phyl I think sporks are trademarked its what the give the kiddies to eat lunch with...
Yes, I think someone should develop a device to imitate tinnitus noise so our loved ones can spend a full 24 hours experiencing what we put up with daily!
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Yes Crazykat!!!! I wake up in the middle of the night because of it, it thumps away so loud with all this distorted sound. It's quite disturbing.
Do you find that yours gets worse when you are ill, run down or just when you've been reading or working for a few hours? I am a lawyer - I used to work such long hours - I was a very strong and dedicated person. Now that pulsatile tinnitus stops me from working like I used to. I just can't concentrate on what's before me when that's going on. I have very loud shrieking tinnitus anyway, but I can cope with that - the pulsating stuff just debilitates me, I found it painful and disturbing.
Oh, that's enough whining from me!! I feel I must temper my tinnitus complaints with the fact that I am ever so grateful that I am alive and well. I really am very very grateful . But life wouldn't be life without a good winge....
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SKT,
The pulsating tinnitus doesn't hurt at all; I just find it very disturbing. It makes me worry about an anueurysm or a stroke, even though I'm in great shape cardiovascularly. Tomorrow at 1:30 I have return appointment with my neurosurgeon and will ask him about this problem. I will pass the information on to you as soon as I know. I know there are special scans that can be done to detect something like an aneurysm before it's too late and will look into that. The wife of a friend of mine had surgury for a brain aneurysm a couple of years ago.
Her symptoms were very much like my symptoms for the A.N.: dizzyness, fatigue, hearing difficulties and so on..... I think she may have had headaches as well. I however, did not suffer from headaches......
Paul
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When I was first diagnosed I asked my specialist if he could suggest anything to help with the tinitus... he suggested a low salt diet! Has anyone else had this suggested to them?
Personally I do not think I eat a lot of salt but I do find that if I have a packet of crisps or a salty meal it does make the tinitus more pronounced!
I also find its louder when I am tired or stressed.
I have gotten good at blocking out noise totally by concentrating on what I am doing... mind you that often means I dont hear others speaking to me, especially at work!!!
I'd obviously rather not have tinitus but I think you just get used to it and can forget about it most of the time. If I think about it or if it changes tone I tune into it again, but then quickly distract myself with something else to forget once again!
L
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Tinnitus is a real pain isn't it. I hate it.
Now, the other day, I got one of these good health news papers in the mail and there was an article on this product called Tebonin. They say " Tebonin is formulated to relieve the symptoms of Tinnitus". "Tebonin is manufactured from a plant called Ginkgo biloba"(sounds like one of Captain Deb's jumbies to me but i won't let that get in the way of a good story). It comes in pill form and available from Go Vita stores. They give a free call number which is 1800 68 0056 - that's either a U.S or a Kiwi number. It's also meant to relieve the symptoms of vertigo.
I think I might enquire about it first but interested if anyone has tried it?
Laz
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actually eye movement "T" is common for AN !!! I have the eye close noise... and is louder if I look to the far right corner ..
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Joe.....You're right! When I close my eyes or move them to either the left or right it gets louder.
Leaving for appointment with my doctor in a few minutes. We'll see how the MRI looks from last week.
Paul
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Here are a few links on the subject
http://www.google.com/search?hl=en&q=tinnitus+eye+movement+gaze-evoked+tinnitus&btnG=Google+Search
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Leigh,
In answer to your salt question. I am on a very restricted low salt diet. Only 1500 mg per day. Try that for bland. I argued with my doctor that I didn't ever eat salt and didn't even like the taste of it. He laughed and handed me a booklet to keep track of my salt/sodium intake per day. Only about 3500 mg for this person who did not eat salt. One Mexican or Orential meal 10,000 mg sodium.
As for the tennitus and low salt. As long as I stick to this diet the tennitus seems to be some better. The pitch is different and the pulsating stops. It has also gotten rid of the stuffy ear feeling and a bonus is the blood pressure went way down on the 4th day. I am used to the taste of no salt now and have learned another way of eating. Drop in weight hasn't hear either. Get on the Internet and see just how much sodium you are consuming and read labels. In order to benefit from this the intake has to be very low. Potassium is need when you go this low.
At one point my husband and I went to a casino and when I came out I could actually hear someone singing and music. It took me a while to realize that was what was going on in the casino. When I take a hearing test the tinnitus mimics the sound that are heard in my only hearing ear. Very difficult to get an accurate reading and the person is giving the test gets confused because I am saying yes when there is no sound.
If you can stand a life with no salt then go for it and see if it helps. It just has to be very low. Sure can't hurt and has some other great benefits.
Sandy
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Sandy - I will certainly take the salt and sodium issue on board and see what happens!
Crazykat - Please let me know how you go. I've raised it with my doctors before and they've never suggested that the pulsating is due to anything other than a symptom of the surgery. I've never turned my mind to it being something alot worse..... I feel that it responds to things like tiredness etc so it's really just another form of tinnitus, just a lot meaner and more disturbing. I'm 2 years 4 mnths post surgery - I really do feel that it is not due to anything other than surgery as it started happening a month or so after surgery and I've had 3 MRI's since surgery. I can't recall how recently your surgery was. I do know you had a very large tumour. Mine was 3.5cm and pretty much all o that was compressing on the brain stem. Let me know how you go.
Sofie.
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Sofie,
Had my consultation today. I'm happy to report that my 8 month MRI - not very long - came up good - no regrowth detected. Next checkup to be scheduled in six months. So far, so good!
I asked the good doctor about our pulsating tinnitus problem. He said that he was aware of other patients reporting the same problem but that so far it really hasn't been an indication of anything worse happening or another serious complication. It's like whenever I shift my eyes to the left or right and the tinnitus intensifies. I asked him about this as well and he said that, as a neurosurgeon, it was a bit out of his realm of expertise; that I'd be better off asking an ENT about it.
Aside from that, it was pretty much a very lighthearted and upbeat exchange. I told him about this forum which he already knew about.
I also told him that I posted pictures of my initial MRI on here. We both kind of chuckled about that. I asked him if he had dealt with anything bigger than the growth I had. He said there was one case he had, a woman, whose growth was so massive it exceded or went beyond the space that these tumors usually occupy, into areas that they never go in the brain. But generally, however, they usually don't go much beyond the proportions I had.
Take care........Paul
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good news Paul.
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...and Paul and his gf and I celebrated last night! He's doing fantastic, looks terrific and heck, who'd know he had surgery last year!
YAY PAUL!!!!!!!! :)
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Glad it went well, you know how much we love good news. ÂÂ
Over the past 8 years since surgery, I have asked my surgeons, ENT's, neurologists and pretty much anyone who has an M.D. after their name, all the issues regarding my tinnitus. I too have the pulsating and also the tone changes when I blink or move my head. Sometimes I actually get the sound of a helicopter.  I have yet to get a good answer. One doctor told me that the brain is still unchartered territory and will be years before it is totally understood. (Glad he didn't operate on me)
Since my surgery I can not tolerate the taste of salt, even in the slightest of amounts. For me I do not see a decrease in my tinnitus, but I know I am much healthier without salt otherwise.
Cheryl
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Hey everyone,
I stumbled across this site tonight after a doctor's appointment where I was officially diagnosed with pulsatile tinnitus. I had seen an ENT specialist back in November (the pulsing began in October) and her first response was, "You know, sometimes we think we hear things..." I was so mad because I knew I wasn't crazy! It's now May, and the pulsing has gotten a little bit worse. It's really weird to be able to hear your own heart beat through your ear (mine's the left ear). So I saw a different specialist and he finally told me what it was. He wants me to immediately get an MRI since it's been happening for eight months now.
I have researched it a little bit, but my main question is, what are the main causes of PT? I don't want any surprises when I get the MRI results so I would kind of like to know what to expect.
Thanks!
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Coralu - are you an AN patient?
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Crazycat - thanks so much for your reply.
I am so very happy for you and your new results. That's just fantastic.
I've asked my ENT and neurosurgeon before about the pulsating tinnitus and they've basically accepted that it's yet another symptom. My ENT surgeon did say that it was a little strange given i don't hear in that ear, but didn't seem to concerned.
Again, I'm so happy for you. You obviously had a huge AN - you should be so proud of how well you're doing.
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Hi Sofie!
Just got back from Florida on Wednesday. I left on the 22nd. Flew down and drove back - to MA.
My ear is still ringing and buzzing. I think the barometric pressure effects the tinnitus.
Paul
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Paul - this tinnitus is a crazy thing! Hope it settles for you. The travelling may have been bit tiring - i feel that your tinnitus tells you that you are tired, much before the rest of your body realises it!
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Permission to come aboard?
I was diagnosed with an earlier this month. I have dizzy spells that last a few seconds and sometimes lose my balance and step sideways to catch myself. The reason I went to the ENT was due to the high pitch tinnitus that started June 22. I remember it well when it started.
Flashback time....
I was coming off the soccer field talking to some of my kids parents and all of a sudden this ringing started in my right ear. I couldn't concentrate on what they were saying because I was trying to figure out what the heck was going on. I did nothing for a couple of weeks thinking it would go away. Finally went to the family doctor who thought it was part of a sinus infection. I took antibiotics for a week and nothing happened. I waited a while because he said it may take sometime to go away. After a month of no improvement I went back to him and told him that the ringing was still there and oh, by the way, could dizzy spells have anything to do with this? He suggested I see an ENT and had blood work done to rule out diabetes, high blood pressure, etc. I went through the hearing test with no problems. Had a balance test done that showed weakness in my right side. Had a MRI done couple weeks later and found a 2cm an.
I wasn't upset in fact I was happy that something was found and I wasn't going crazy. All this time I thought the dizzy spells were due to low blood sugar, high blood pressure, being hungry or any other excuse I could think of and my balance problem I wrote off to my bad back. I was even happier when I found out that the tumor was benign, a slow grower and I had options.
Doing all this research on AN I find out that my memory problem and speech problem may also be caused by my friend. All this time I thought it was the fact that I was getting old or Alzheimer's was setting in early.
I have been to Dr Kveton ENT and Dr. Joseph Piepmeier NS both suggested trans. surgery with no other possibility. Since my hearing is excellent I want to try and preserve it if I can so I am making an appointment to see Dr. Gill Ledermen in NY and Dr. Issac Goodrich in CT. for their opinion.
Sorry for the round about way to get at my question. I was wondering if anyone has had radiation and what effect that has had on their tinnitus? And if so what type of radiation treatment?
Thank you all for being here, it is a great relief to know that there are others who care.
Mannyd
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Hi Manny,
Just as You I am new to AN. We are pretty much diagnosed at the same time,side and size. Welcome to this board not that I wish you and anybody to be a member of this society. However You will find a lot of info and caring here. As a newbe I found to get most responses if I started a new thread. I am still researching my options and people on this board address pretty much all aspects of this ailment.
Good luck,
Flier58
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Mannyd, I had microsurgery, and can say that the tinnitus hasn't gone away. I think that is true for most of us, including radiology patients, when I think of all the threads I have read that seems to be the status quo. With a 2 cm you have lots of options of treatment, I'd keep reading and educate yourself before you make any decisions.
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Permission granted and Welcome, MannyD!
If you will scroll over to the treatment options page, you will find lots of folks who've had experience with radiosurgery, as well as links to some radiosurgery forums as well. Sorry you have to be here, but this forum will provide you with tons of information so you can be pro-active in your treatment choice. Good Luck!
Captain Deb 8)