ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: Rick Everingham on February 26, 2008, 10:40:03 am
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I don't post a lot but I need to share with people who understand. I am 4 1/2 years post surgery (trans lab) and I still fight (as we all do to some degree) SSD, tinnitus, depression and cognitive issues. At times the ringing is so bad I could just scream, I hate restaurants and being in crowded rooms with lots of noise (makes the ringing worse). Went to a Valentines banquet and had to leave mid-way through because the ringing was so bad. I still fight cognitive issues, having a conversation and complete drawing a blank on a word in mid-sentence, I have to proof read everything I type carefully for incorrect words and my memory sucks. I am simply not the same person I was before and I hate the changes. But of all it, the ringing is the worst, I would give a million bucks for silence.
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Hi Rick,
Like you, I don't post much but I felt so bad for you when I read about your noise going on in your head. When you wrote, "I would give a million bucks for silence", I understood how bad it must be for you. I was just thinking biofeedback might be helpful. It can't hurt with depression either. I don't have tintinnitis but I have other post surgery junk that I have to deal with daily.
I really just wanted you to know that I wish you did not have to have that awful noise in your head all the time. Don't give up, though. Nothing wrong with a good scream..
Patti
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Rick,
We'll all cover our good ears and you go ahead and let out a good scream! You've earned it!
Wish I had some words of wisdom to offer or, better yet, a solution. Just know that you're not alone and we feel your pain. I hope you get some relief soon!
Lori
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I saw your note
- and yes a bit like the "need to vent" thread ?
which now will reach around the globe (surely ?)
anyhow there are things you can do
- if you want an offline chat I am happy to send
you some of the cognitive stuff etc
Finally make some notes re the ringing
basically caffeine and similar are said to make it worse
excessive noise/traffic exposure does not help
and general tired-ness is often a trigger
plan (where possible) ways to reduce these
and the noises will ease
wishing a quiet week for you ?
best regards
Tony
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Hi Rick
I've had Tinnitus for 25 years. I fully know the frustration you are feeling. For years I was a corporate marketing exec. The ringing and hearing loss created such a disruption in my ability to function, that I was eventually "retired." I found some relief in the acting business.
Resturants and Clubs are just about impossible. I gave up on clubs and in restaurants I do a lot of lip reading. I do wear a hearing aid in my "good ear." It helps somewhat but unfortunately it also amplifies the surrounding noise -- and I have the top of the line aid. It's gotten to the point where I will carry on conversations with people that speak clearly and loud enough for me; but I will ignore the mumblers and tiny-talkers. It doesn't have to be your frustration. I always wanted to design a t-shirt that read: Hearing loss is a disability; mumbling isn't. Speak up, damit!
As far as the ringing -- I have no suggestions. Over the years I got used to it like it was a part of me. I rarely notice it anymore unless writing like this brings attention to it. It does help when those around you understand what you are dealing with. At one time I found this website that had the various Tinnitus sounds that you could play for others. When they heard mine they were a bit more understanding. Mine sounds like a steam kettle.
And here's the misery loves company part -- Tinnitus suffers include, Pete Townsend, Bono, The Edge, Neil Young, Ted Nugent, David Letterman, William Shattner, Steve Martin, Bill Clinton, Sting, Cher, Trent Reznor, Phil Collins, Brian Wilson, and of course, Ozzy. And that's just to name a few. The list is very long.
There are some that say white noise helps them in quiet situations like trying to go to sleep. And I do know that coffee, cigarettes and stimulants tend to make the ringing louder. I sympathize with you. My only suggestion is pick the places where you are comfortable. Avoid the ones where you aren't. And when you are in those situations like the Valentines Day banquet -- I just keep telling myself it will be over with soon. I realize that is sort of fatalistic -- but over the years, it's the way I learned to cope.
If you ever want to vent, please feel free to write me.
Best Wishes
David
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Hi, Rick:
I'm sorry to read of your continuing post-op problems. Unfortunately, like the previous posters, I don't have an easy remedy for your SSD, tinnitus, cognitive issues and resulting depression. We've all suffered in varying degrees. The reality is that once having an acoustic neuroma tumor, even four years post-op, can result in life-altering changes that are difficult to simply adapt to. 'Head noise' is maddening and can be debilitating, as you well know. As you also know, there is no simple fix. I wish it were not so.
Those who surmount these challenges usually begin by accepting them as now a part of their life. That doesn't mean liking any of it, just accepting the reality that your hearing in the affected ear isn't coming back and the tinnitus isn't going away. The cognitive issues can be 'worked around' to some extent but that requires effort and determination. Most things worth doing have a similar requirement.
Mourning 'the old you' is perfectly normal, as is resentment for your losses, but at some point one must at least try to face and accept what cannot be changed and move on with a determination to improve what can be improved and to adapt to what cannot, which is always difficult - but achievable. While you have the aforementioned issues to deal with, others have facial paralysis, pounding headaches and other problems, including a loss of equilibrium, that you don't have to battle. That knowledge may not resolve any of your problems but it should help to remind you that AN tumors can and often do leave all sorts of 'scars' that we have to face and eventually either adapt to or conquer... preferably the latter.
Rick, I'm glad you posted and I certainly understand your frustrations. I'm gratified that you chose to take the time to post your feelings here, among those who do understand, often from their own experience. I would mention that there are some medications for some of the problems you've mention so I hope you'll present those issues to an understanding doctor who may be able to prescribe something that can alleviate your various problems or at least lessen their impact on your life.
I trust you'll stay in touch with this site and forums and of course, we all wish you better days. :)
Jim
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I've found that excercise helps me a bit. I have been running. Regarding cognitive issues-ya alot! Feeling of floatiness, memory, attention, fatigue, depression, anxiety, impending doom!. re: attention-For instance, I wanted to heat up some tea the other day and refill an ice tray in the freezer. I grabbed a cup of water placed it in the microwave, then grabbed the icetray, put water in it, then placed it in the freezer... THAT IS WHAT I PLANNED AND SHOULD HAVE DONE...
What I actually did was remember taking the cup of water and placing it in the microwave to heat, but there was the icetray with water inside the microwave!, I had put it there without realizing it and It was a blank to even remember what I did.
this happens in speech to, hearing and enunciating words, like aphasia or something. I may replace words that don't belong and my grammar is crooked. depersonalization, derealization, and of course my neck twitch that I brought up in another post.
I do not dream hardly anymore. Psychosis and dementia coming on early I do not know.. ??? maybe the Dr planted something inside while I was under- HAA
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Thank you all for letting me vent, I really appreciate it as only someone who has experienced this can fully understand it. Let me say, that overall, I have been blessed by my outcome and do not suffer many of the problems I see other people with in here. Just lately for what ever reason, things have really gotten to me and I needed to scream.
Part of the reason is some symptoms have returned such as facial twitching, I had a lot of facial nerve involvement, but my facial nerve was not severed or damaged during the surgery and in fact the twitching had went away, but it is back. So is the dry mouth and tinny taste, but an MRI at Thanksgiving did not show a tumor so now why are they back, docs are trying to figure it out. My right eye (AN side) has since went dry and I must use artificial tears daily, but this did not happen until about 3 years after surgery, go figure.
I think the my biggest frustration is I look normal, but I am not. My family doesn't really understand, they try, but they don't get it. I used to be outgoing and loved to be around people, but no anymore, it is just too darn difficult. Speaking of mumbling, my wife has five brothers and they all mumble and speak with an accent that is unique to this area of Virginia (had trouble understanding them when both ears worked), now it is virtually impossible to have a conversation with them, kinda kills family outings.
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David,
I want one of those t-shirts. I look good in jewel tones and white. You can express post to Canada. Pay Pal, Visa or Master Card?
Rick,
I understand your frustrations. I get "You look so good, that's your problem." Yeah I look so good because I work so hard at it. My smile doesn't reach my eyes.
I too still have the tinny taste, dry mouth, numbness and awful pain at my temple that shoots behind my eye, like right now.
The mumbling drives me insane. We need David's shirts. The shirts could be very lucrative 8)
Take care guys,
Anne Marie
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Rick,
Vent away, it will make you feel better. Hope you have a better week...we're here for ya.
Gary
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I am in - can you send me one of those t-shirts to Oregon? ;) ;)
Rick,
RE “ringing�
The only thing that works for tinnitus in noisy environments, for me, is an ear plug. I have tried every brand under the sun
We bought a case of these (my most successful brand) and I have an ear plug in more often than not.
http://www.howardleight.com/family/index/1
So basically I walk around with this new fashion statement - of a “deaf left� pin on the AN side and a florescent orange earplug in the good side.
I wear the earplug in restaurants, stores with air systems, driving ... and it does reduce my ringing- tenfold. (Why input in the good ear causes the dead ear to ring so – is beyond me. :-\) The other thing I do to reduce the tinnitus is stay clear of salt… (and I would have to agree with Tony about too much caffeine can be an additional factor)
I got my ear plug in the good ear- so ok ...scream (just not at someone) … until it leaves your system.
HUG
4
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Send one of those t-shirts to Nashville, please...
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Hmmm. Seems like I hit on a new business. Hearing impaired t-shirts!:-)
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Rick...I'm so sorry....I feel very lucky, I've had tinnitus for 20 plus years, and even though it's loud I've conquered ignoring it. Thank goodness for that.
I complained a lot about the same symptoms as you to my doctor, and every time he would come back with, "Have you thought about getting a BAHA". I always said no. I didn't think getting a hearing device that would just add more sound to my head would make that big of difference with those other things. I've had a TransEar for two months now, and it's helped me a lot with my quality of life stuff post surgery. In ways I could of never imagined, but mostly my speech discrimination and the feeling of displacement in groups because I don't understand or get things that are going on. My doctor was right. So think about trying it. It's not a miracle, but I'll take anything that improves my quality of life.
Good luck! And David, I'll take a t-shirt! I still don't get why people think that being deaf in one ear isn't a disability, but I get that all the time.
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Note to Rick : no longer dream ?
Dream states usually occurr in certain states of sleep
- not the"deep" sleep but in the "half awake half asleep mode"
maybe your sleep patterns have been changed slightly
(brain stem changes can change these)
- or maybe you dont remember the dreams ?
(I used to like my dreams- the cheapest DVD rental
I ever got...)
Best Regards
Tony
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As I was weaving my way thru Walmart this am ,I realized I also need a t-shirt which says I have a brain tumor--I'm not drunk!
I also am finding in reading some of my posts and even after proofreading, that strange words pop up that I have no clue why I wrote that instead of the intended word! But I know you all understand!!!!
Cheryl R
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I think we all understand to well and don't even notice ourselves. The drunk T shirt is a good idea. As my son is getting closer to driving it worries me that he will be pulled over and could not come close to passing for a DUI. It would kill him to be arrested and thrown in jail. Just more to worry about. You know that is a Mothers job. ;) 16
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Note to Rick : no longer dream ?
Dream states usually occurr in certain states of sleep
- not the"deep" sleep but in the "half awake half asleep mode"
maybe your sleep patterns have been changed slightly
(brain stem changes can change these)
- or maybe you dont remember the dreams ?
(I used to like my dreams- the cheapest DVD rental
I ever got...)
Best Regards
Tony
Ya I posted about dreaming. I used to be an avid lucid dreamer, OBEs during sleep paralysis etc. Since surgery those have since dissapeared :-\ During those episodes it would be like hearing ,sight, smell, taste, feeling +6 th sense would combine into one.
With monohearing I sense I cannot achieve such heightened awareness during sleep. -only my wifes snoring via bone conduction :-[
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:D :D :D
RE:
"With monohearing I sense I cannot achieve such heightened awareness during sleep. -only my wifes snoring via bone conduction "
That is too funny. :D
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"With monohearing I sense I cannot achieve such heightened awareness during sleep. -only my wifes snoring via bone conduction "
;D ;D That is only too true, thanks everyone, I appreciate the opportunity to vent.
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Vent away... I have had tinnitus since a concussion at age 4 ...42 years of ringing ...I used drown it
out some at night with music playing or setting the TV to sleep mode for an hour so I would drift off ...since
surgery the ringing in deaf ear gets unbearable at times... it pushes out reasonable thinking ... I put toilet
paper in the refrigerator , say the wrong words and wonder why I get funny looks ,I have to re-read and
re-type to cover for what I wrote and change it to what I really meant... but when I get mad about it I just
state to myself ... I am breathing ... it helps... and I can no longer mask the ringing with music or TV
since I have no hearing in that ear
I need one of those shirts too... I am constantly telling my 10 year old who is a mumbler all the time that
she can change her volume and way she talks but I can not change my ear back to hearing ... she does
good for a while and goes back to mumbling ... she comes by it honest as her dad is a mumbler... being an
adult I get madder at him when he doesn't speak up and clearly ... sometimes I refuse to ask him to repeat
himself and ignore him ... I figure if it is real important he will learn to talk so I can hear and understand him...
and sometimes he will ask me something and I answer him as if I have a mouth full of marbles ...
that really gets him
My mom started having some tinnitus about 3 months ago... over the weekend she was complaining and
moaning about how it was driving her insane ...I told her to remember that 4 year old that got paddled for
running off in stores that had alot of florescent lights and the TV department of store in the days of TVs with
tubes (which really bothered me) and when she remembered her , well then she could come moaning and
whining to me ...
doctors said they could find no problem and I was trying to get attention or just
disobedient ...so got swatted when I told them I had to leave and when they didn't remove me from
situation and left got another paddling... then at one point when we pulled up to a place that I had had
problems in before I was paddled before going in as a reminder to not leave their sides...
At about 12 I read in Readers Digest an article about tinnitus and showed it to them and said this is me...
doctors still couldn't find a problem but said that it starting after the bad concussion , that the concussion may
have started it ...it required almost 2 weeks in the hospital mainly because I had bleeding from ears and nose
and abnesia...when I came around the first people I saw were doctors and nurses... when they brought my
parents in later I had no idea who they were and was scared of them
Short answer is I have no answer for you ... my tinnitus still makes me batty sometimes but I have learned
to deal with it
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Vent away... I have had tinnitus since a concussion at age 4 ...42 years of ringing
Hmmmm... I had a bad concussion about age 7 (I was one of the many examples of why they make kids today wear helmets on bikes!) and interesting enough until the AN surgery was the last time in a hospital) .. not sure when the ringing started.. It used to come and go.. and I was a teenager I guess when it started full time ..
and today.. if a genie said I could choose between 1 million dollars or my "T" would go away... without hesitation .. I would wish for the "T" to go away...... :o
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David,
WHERE'S MY T-SHIRT??????????? I'm waiting!!! Oh, maybe we need Lorenzo to design something for us. What do you think, he is very artistic?
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Rick,
I know EXACTLY how you feel. Everyone tells me to just "deal with it". Deal with what??? The NOISE??? Forgetting words! I used to be a big "schmoozer" and great at speaking to people but now...I just look at them and can not find simple words! I read something about this happening after AN surgery and spoke to my Mom who says, "honey, don't read so much into everything". But when it's your livelihood and what you do...then what do you do???
Dinner out is the WORST! If I'm in a "quietter" restaurant, then I'm alright but any place that has music and more than 10 patrons, forget it! The high pitched "beeeeeeeep" gets so loud I've actually had to walk out on my Family one night and sit outside until it stopped. Sometimes when I don't stretch my neck muscles I can hear each tendon and muscle fascia move and even my eyes! When I dart them back and forth I can hear a subtle "swoosh". The Dr. says because the definition of tinnitus is "head noise" that I should just get used to it.
I'm so depressed too :( Hope to hear from you soon
Samantha :( :'(
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My husband told me he doesn't dream, but he does. He just very rarely remembers any of his dreams. Ixta, you might think about going to a sleep lab and be monitored, because dreaming is important and if your sleep patterns are fouled up, then you need to find that out.
I have constant tinnitus also, but most of the time it's manageable and we don't go out that much anymore so that's not a real big issue. Went to a noisy restaurant on my birthday the first of this month, and I sure noticed it then! It's mother nature's little rotten practical joke that as you lose some hearing, you also gain internal noise. Mother Nature isn't always a very nice person! There was another word I was thinking of, but you can't use it here!!
Hang in there,
Sue in Vancouver