ANA Discussion Forum
General Category => AN Issues => Topic started by: Bobbibl on November 12, 2008, 09:21:53 pm
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I know I'm only 2 months out but does life get any easier then this? I was left with SSD (normal hearing going into surgery) and extreme noise induced tinnitus (volume around me seems to be the only thing that effects it). My life both professionally and socially seem to be headed down the drain. I am single and in my 20's and was moving up the ranks of my company very quickly. I've always been the outspoken, leader, workaholic type. I just started working again and am back to traveling and taking out clients all the time (there choices of locations not mine). These tasks are getting nearly impossible to do. I've worked to hard to get where I am at and am trying to do whatever I can not to have this tumor change my life. I spoke to an audiologist about baha/transear and they said they will not help me in noisey settings. Any suggestions?
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Bobb -
your audiologist is right about the BAHA (and the TransEar too, I suspect) it doesn't help in noisy settings - like crowded rooms.
I have always been outspoken and a leader, and that hasn't changed for me post op. It doesn't need to change for you either. Life is what you make of it, you just need to make a few adjustments and get used to your new "normal".
One thing that might help you is to suggest the location when you entertain clients so you can pick someplace that is conducive to your SSD. If that's not possible, you should at least be able to ask for a table in a quiet section of the restaurant - and if you're uncomfortable attributing this request to your SSD, you can just say it's a better environment to discuss business :)
Good luck,
Jan
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I'm sure you've already thought of this already, but it's worth mentioning in case you haven't: try to arrange seating so that your good ear faces your clients. That is, sit with the edge of the table immediately at your left (AN) side.
If it's a dinner date, try to arrive at 5 PM before it gets crowded and noisy. Also look for restaurants that have acoustic tiles or an irregular surface on the ceiling and lots of stuffed furniture on the floor. That keeps the noise down, too.
Best wishes,
Tumbleweed
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One suggestion is to go a little easy on yourself and give yourself some time to adjust, adapt and heal ... two months is not a long time considering what a major surgery you've undergone. Folks who have had surgery report steady improvement over the course of many many months after surgery and I'm sure you too will feel improvement. So nothing in your life is going down the drain. You may need to make some changes but you'll be back in due course. Be well, Francesco
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Hi Bobbi am only speaking from experience here, i think it takes abit longer to get over the removal of a large AN, mine was over 4.5cm, i think you may have returned to work abit early, i know your only in your 20s try and slow down a little, am nearly 2 years post op and just beginning to feel like my old self.
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One thing that does help me in noisy restaurants is to plug up the GOOD ear with a muscian's plug. You can pick from three filters, I chose the middle one so I could hear the person talking next to me, but not the background noise. It helps tremendously with toning down the background noise.
Just yesterday I was in a restaurant with high ceilings, bare walls and floors, talk about noisey! I put in my plug and "whalah" I was able to keep my stress level down and hear the people sitting on my "good side" also those sitting in front of me.
Now, the people I was sitting with were hard of hearing, some had cochlear implants, others had nothing, and some had hearing aides. They too were having much difficulty in this type of environment. All of us know lip reading (I took classes) and when my lip reading teacher began to "sign" I loved it as I'm a new student to ASL. This made for a much easier conversation between the two of us.
There is a DVD for learning to "lip read", $50 I believe titled "I Can See You Talking". I would recommend this to you. It will take some diligence on your part to learn this or maybe there is a class you can attend.
Either way, the ear plug will be a "quick" fix, learn to talk with it in so you don't "shout". Have your partner tell you when your voice begins to raise, you will learn the feel of "vibration" your body has and you will learn to keep your voice at a proper tone. Hope this helps and I too don't want to see you lose what you've obviously worked so hard to achieve.
Telling those around you you are "hard of hearing" definately helps and will help others to understand your situation. Most people do want to "help" others.
There are some great "tips" posted here in Hearing Issues on "tips for the hearing impaired". Do a search for this.
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The noise issue, as you have experienced, is very real, even if you are not SSD. I used to complain that lots of restaurants are designed with no consideration whatsoever for good acoustics. I used to design sound studios...so this is a topic I know very well. As someone suggested, avoid places full of hard surfaces. In environments like that, sound energy just bounces around from surface to surface and what was a bunch of conversations turns into a mish-mash of unrecognizable noise. In extreme cases this can be a problem even if both your ears work.
While I tolerated it in the past, now, with SSD, I don't any more. I pretty much refuse to go to restaurants that I know are acoustically bad. There's an Elephant Bar in my town that is just terrible: glass dividers everywhere, hard walls, metal surfaces on the walls. I can't understand what the person sitting in front of me is saying. It's bad.
If you can control your environment, the obvious choice is to try to aim your good ear towards those with whom you need to interact. If that is not entirely possible, try to set it up so that you get a booth or table against a wall or glass. Point your good ear towards the wall/glass. Sound waves will bounce off the wall and you'll be able to hear others on your table better, even those on your deaf side. Of course, if the restaurant is noisy all sound will compete for your attention. It'll be better but not perfect.
Here's some Star Wars philosophy that is right on the money:
YOUR FOCUS DETERMINES YOUR REALITY
I think it was Yoda who said that. Think about it. Understand it. Live it. If you say this to yourself when you are pissed off because of your problem you will (or should) instantly shift your focus to what is really important. What you choose to focus on today and on a day-to-day basis will most definitely determine your reality in the future. Focus on what you want that reality to be and make it happen.
-Martin
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Bobbibl,
You can and certainly will adapt as time goes on. I too have a job that has a lot of interaction with people and I'm in many meetings. I think someone else said this already, but I usually arrive a few minutes early to the meeting to make sure I can sit in the side of the room giving me most exposure to my good ear.
I went back to work about 6 weeks post op. Now I'm about 3 months post op and I can tell you in the last few weeks that things have gotten much better and closer to what they were before the AN surgery. Keep a positive attitude. You will do well and can still reach all your goals.
Patrick
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Bobbibl,
You've gotten some great advice from all these postings! And I agree that, yes, things will definitely get better for you. Try not to be so hard on yourself (I know that's easier said than done!), but you've only recently been through a pretty major event -- brain surgery! -- and you're still in the recovery stage. I am sure that going from excellent hearing to sudden-onset SSD is awfully traumatic (my entry into SSD was very slow and gradual, to the extent that my brain had adjusted pretty well and I thought I was setting myself up for a "you just need a hearing aid" diagnosis when I got my AN diagnosis instead), and your brain is having to work overtime to adapt to your new "normal."
As previous posters have said, positioning yourself in a room and within a group setting are absolutely critical. The whole process of a group situation in noisy surroundings is fatiguing as well -- you're constantly straining to hear what's being said, your brain is trying to put things into context, you're looking at other folks to glean visual cues for appropriate responses, etc., etc. It's hard work!
Even though the BAHA (and, as Jan posts, we also assume the TransEar) doesn't resolve the "noisy room" issue, it sure makes life a lot easier under other circumstances. Have you considered going to an audiologist for a BAHA demo? It might be worthwhile to give it a shot.
Best wishes as you continue to navigate your post-AN status. You sound like a resourceful guy, so just hang in there and you'll do fine!
Catherine (JerseyGirl2)
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Bobbiel:
I'm sorry to learn of your difficulties adjusting to your SSD. I can't improve on the excellent suggestions already offered but I hope you'll consider them. Aside from the obvious physical limitations of unilateral hearing loss, attitude is paramount in making the needed adjustments in your life to acknowledge and accommodate your SSD. Although you had a very successful surgery, for which you are, no doubt, grateful, you did lose the hearing in one ear and that has to be dealt with. Experiencing such a profound loss of what is a natural ability is always stressful and certainly can alter our self-image. That is compounded by the fact that this loss is affecting your ability to do your job and the situation gets more serious while your self-image as a vibrant, capable young man is further battered. What to do?
The short answer is: adapt. Whether you consider a BAHA device and/or simply alter your choice of restaurants and seating positions for business meetings, you need to meet this challenge (hearing loss) head on with creativity and a steely determination to surmount this obstacle. Unfortunately, even the best surgical outcomes usually leave the AN patient deaf in one ear. I was 'lucky' in that the onset of my deafness was slow and I had plenty of time to adapt. However, even after quite a few years of being SSD and using various adaptive strategies, I still 'miss' some things (in certain environments/situations) and occasionally either have to pretend I heard something I didn't or say 'what?'. Even so, few people in my acquaintance realize that I'm deaf in one ear. I've mentioned it to some - out of necessity - but most act surprised when I tell them and they often forget, anyway, and will talk to me from a distance or talk too softly in a noisy environment, making it impossible for me to hear them.
SSD is a handicap but not a disability. It can be overcome with aids and a willingness to make whatever adjustments are necessary to function as you need to. However, it is a reality you have to admit and then decide how best to deal with. Many folks have accomplished this. I'm certain you'll be another. I trust this forum and the advice offered will be of some help.
Jim
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Bobbibl-
I would echo what everyone else here has said - give yourself some more time to adjust. I'm six months post op and am still adjusting (some would just say I'm slow...) And, yes, there are some days when I feel discouraged and frustrated - but you can't let this define who you are. You are still the same bright, gifted, successful person you were pre-surgery - now you just a have a few extra challenges. And, if you need to feel mad once in awhile, go ahead!
Debbi
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Picture this for a good laugh about SSD:
My husband has otosclerosis in his right ear and needs surgery. I'm pretty much deaf in my left ear from AN. At home, we have side-by-side recliners--I sit on the right, Wes sits on the left. WE CAN'T HAVE A CONVERSATION that doesn't involve lots of "huh?" "what?", etc and turning of heads 180 degrees so that we can use our good ears. LOL Those chairs have been there since we could both hear good and for some reason we haven't changed them yet. ;) We're in our 30s and I thought we'd be old and gray before we got to this place. Drives visitors crazy. ;D
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A great discussion with lots of good tips and advice on how to handle SSD + tinnitus.
I just went to Whole Foods for lunch with 2 work colleagues and even though they know of my hearing loss and trouble in noisy places (and WF eating area is baaaaad in this respect) and offered to shift sitting around to accomodate me (i said "don't worry"), i could not hear the person on my left and struggled to hear the person in front of me. I was so happy to get outside where i felt more normal. I am not sure restaurants will ever be the same for me, but i know now that i need to look for places that work for me.
I don't expect things to change (i mean i don't expect the hearing or tinnitus to improve) so i think it comes back to fixing the things you can (e.g. choise of restaurants, choise of seating, etc. as discussed in other posts) and accepting the things you can't. I LOVE the Yoda reference (another of my favourite Yoda quotes is "do or do not. there is no try". i just throw it out there cuz it's brilliant).
I am also not afraid to ask people to speak up or to repeat things. People know my situation and seem happy to accomodate.
I must check out those musician's plugs. I had heard that putting an ear plug in the deaf ear helps, but have not tried this yet.
Sorry you are struggling with this. You are not alone.
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I had similar difficulties right after my surgery as well. I couldn't stand going to noisy restaurants or even certain stores - like Sam's club or anything big and echo -ey (is that a word?). It took close to a year, but now I can honestly say those things don't bother me as much. I try to avoid the noisy restaurants, but if I have no choice, I can handle it. Sam's club is no problem either. I think it takes a while to adjust from having good hearing one day, to having no hearing the next.
Once your body figures out what the heck is going on, it's not as bad. In the mean time, I'd definitely use some of the other suggestions made here. You certainly don't have to feel like you've lost all you've worked so hard for - you just might have to make some adjustments along the way. It does get easier!
Lori
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I too have a job that has a lot of interaction with people and I'm in many meetings. I think someone else said this already, but I usually arrive a few minutes early to the meeting to make sure I can sit in the side of the room giving me most exposure to my good ear.
Patrick -
prior to my BAHA surgery I had to do this also and it used to frustrate the hell out of me. With the BAHA, I don't have to do this for meetings at work anymore - which IMO is a huge relief.
Have you considered a BAHA? They aren't for everyone, but it's sure made a big difference in my life - both at work and at home. The demo is very impressive; you might want to check it out.
Just a suggestion,
Jan
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Jan, yes, at my 1 month post op visit with my ENT/neurotologist, I did try out the BAHA demo. I had my wife sitting on my SSD side talking to me while the audiologist was making noise on my good side. I was pretty amazed with how it seemed to work. However, I know it's nothing compared to the AN surgery, but honestly I was not(and still am not)thrilled about having my skull drilled into again at least for awhile. While it sometimes is an inconvenience, I've managed to adapt pretty well so far. Most people I work with still don't know I'm SSD.
I might try the demo again on my next visit in January, because the first time I was still sort of in recovery mode. Do you have tinnitus on your BAHA/AN side? I'm wondering if this has an impact on the efficiency of the BAHA.....my tinnitus is still at a fairly strong level on that side.
Patrick
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Patrick,
I have tinnitus on my AN side and have found that it does not impact at all on the efficiency of the BAHA (i.e., the BAHA doesn't intensify the level of tinnitus, if that's what you were wondering). I had my BAHA implant at the same time as my AN surgery -- seems to be a fairly common "combination" at House, less so at other institutions -- so while I don't have first-hand experience with the implant as a separate procedure most of the people who've commented on this forum report that it's no big deal and comparable to a dental procedure. Best wishes as you make your decision. I've found my Intenso to be a big help in daily life and comparable to a pair of contact lenses in terms of having become just part of the daily routine.
Catherine (JerseyGirl2)
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Patrick-
Have you looked into TransEar? I happen to be in the same camp as you in terms of not wanting another knife anywhere near my skull yet (even though it is a minor surgery!) so am looking into TransEar. Only challenge I am having at the moment is finding someone near enough to me to fit me for one.
Debbi
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Hi Patrick , there is also the cros aid to consider.
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Patrick -
I'm extremely fortunate - I don't have tinnitus in my AN ear - or my other ear either.
I was concerned that the BAHA implant would cause me to have tinnitus, but my doc said it wouldn't and it didn't.
I wasn't too thrilled to have another surgery after my AN removal, but the BAHA surgery was a piece of cake. Outpatient, short, and in my case, local anesthetic. The recovery was a breeze also.
As Catherine said, I'd liken the BAHA surgery to a dental procedure - come to think of it my neurotologist did also. You feel a little pressure and hear a little noise when the doc uses the drill, but no pain whatsoever.
If I can survive it, I'm confident anyone can.
Jan
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Hi Patrick,
I have the TransEar to help me with my SSD. I chose that because I'm thinking that in the future some new technology may come along and I didn't want the abutment from the BAHA in my head. From what I've read it seems like the BAHA and the TransEar have similar results. Neither one of them work in noisy environments. In normal situations, it really helps me to hear things on my deaf side that I might not have noticed in the past. I also appreciate the fact that I can take it in and out of my ear easily. It's very comfortable. Once it's in my ear I forget about it.
Jean
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I am still on the other side and have not crossed the Rubicon yet, if SSD is the only problem after the op. I would be woop wooping like all you Americans do. I have had ssd and loud tinnitus for ten years now and all I can say its fine, I do milk it a bit when the wife is getting a bit naggy I just go into my what ?what? mode.
At night I sleep on my good ear so cant hear a thing, apart from my tinnitus, which to me sounds like a tropical rain forest. in fact last night we went to a bar in a rain forest and I could not believe the sound coming in my good ear was identical to my tinnitus. I told my wife to listen to all the bugs that is exactly what I hear. Its like camping in the jungle every night in a comfi bed, with out the mosquitoes, Dare i say it life would be a bit strange if it suddenly went away.
At parties I always explain to the person on my right that they are on my wrong side and they have to excuse me if I cant hear them if the music gets loud. and its always a good conversation starter, like journalist say never let the truth get in the way of a good story, I say it was damaged when I was working with the rolling stones etc ;D
I never bother with a hearing aid because ignorant people automatically assume you are a bit of a retard if you turn up with a big box on the side of your head.
All I can say in a few years it wont bother you at all. Except when you buy Hifi and head phones you feel a bit cheated having to pay for an item which you can only use half of it.
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Bobbibl,
2 months post op....you're still recovering! I went back to work at 6 weeks 1/2 time (from home) and full time at 8 weeks. Big, open noisy places bothered me and I am not SSD, but for a while it sure felt like it. Restaurants were VERY hard. I can now say that at ALMOST 3 months post op, restaurants, the mall, work (big open noisy room - well, not as noisy since they laid off almost 100 people) dont' bother me anymore.
I, too, travel, conduct meetings, etc. Fortunately I haven't had to travel since my surgery, my mgr has been very considerate of my recovery, but when I was thinking I had to travel, I was planning to go through a smaller airport, like STL instead of ORD, and just trying to modify things to make it easier for myself.
Give yourself some time and don't push yourself too hard yet. You're young, but I've found that when I over do it, I take a step or 2 back in my progress for several days. IMHO - just not worth it.
Good luck, and be patient. :-[
Cathy
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Ya I have a tendancy to push myself too hard. I have flown on my own several times now and those all went well. I wore ear plugs on the last flight since the sound was bothering me. Also, did make it through my cousin's wedding and actually enjoyed myself. Being SSD in this setting was a bit frustrating with having to turn my head back and forth but I made it through. Now if only the tinnitus and pressure would stop. Hopefully work goes well next week.
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Bobbibl:
Yes Life does get easier, or rather it gets back to normal. I'm almost 10 years past surgery now and have forgot most of the details. Fortunately, I kept a journal - actually writing the journal freed me from having to remember everything. And that allowed me to finally sleep (which I couldn't do right after surgery.) Anyhow, checking back in my journal, I notice that I improved a lot in the first month, some in the second month, and not much after about six months.
I wore the Cros Aids for a while - they allowed me to hear in all directions, but not to tell the direction from which the sound came. When I got to the point that I had to wear glasses, I gave up the Cros Aids - all that hardware (aid plus glasses earpiece) behind my ears was giving me a headache! My tinnitus continues, but mostly I don't notice it unless I listen for it - I think my brain just ignores it. Somewhere along the line, the pressure problem did go away. SSD does affect my enjoyment of large group events, and some folks are easier to hear in a noisy environment than are others. If you have long hair and don't wear glasses, you might try the Cros Aids.
Other than the SSD, the longest lasting after effect was the scalp tingling. I find in my journal that I calculated it would take 10 years for the nerves to regenerate. Well...ten years later I don't have any tingling ;-)
Good luck,
Rosemary