ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: dufreyne on November 30, 2008, 02:50:01 pm
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Just wanted to post an update to tell ya'all how things are going. Overall, I feel very blessed to have come as far as I have in the last 5+ weeks. I still have some ongoing challenges--for example: no tears or saliva on right side, mild headache, ongoing 'wonkiness' and dysequilibrium (but with vestibular rehab + time it is getting slowly better), fatigue (also getting better), hearing loss (my hearing test is next wednesday, but I doubt I have any serviceable hearing). But the most difficult challenge is the tinnitus. I did not have pre-surgical tinnitus (except for 2 short occasions). It is so loud! It gets louder when the ambient noise increases or is more chaotic. It makes it so that I have difficulty thinking clearly. Does anyone know what the natural course for this may be? I'm not sure if it will get better with time or not. Is there any treatment or exercises? I've looked through the literature, but unfortunately there are few studies that address this specifically. Any thoughts would be appreciated.
Dufreyne--
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D -
thanks for the update; glad to see you back. Sounds like all in all your recovery is pretty normal.
I wish I had some suggestions for the tinnitus, but fortunately I am one of the few who don't suffer from it. I don't think there is a whole lot you can do about it, but I'm fairly sure that in time people get used to it. I also recall a post on this forum that talks about things that aggravate tinnitus; I want to say things like caffeine, stress, and fatigue, but I'm not 100% sure. Have you searched on "tinnitus"? In the meantime, I'm confident that others will be along soon with some suggestions for you.
As for the hearing, I highly recommend the BAHA and I've heard the TransEar is also a great way to go. In the future you might want to look into these options.
Jan
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Dufreyne ~
Good to see you back and apparently doing quite well at 5 weeks post-op!
I've had low-level tinnitus for many years. It didn't change much after my surgery. Frankly, I've just adapted to it and hardly notice it anymore, even in what some say are aggravating conditions. I also drink a lot of coffee and occasionally become fatigued and it doesn't have much effect one way or the other on the tinnitus. However, as unique individuals, my experience with tinnitus probably won't mirror yours. That having been said, I maintain that because the condition is basically intractable, your brain will adjust to it and the noise (and your sensitivity to it) will become less problematic over time.
Jim
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Hi Dufreyne,
I've wondered what symptom I'd like to get rid of forever, if I could. Tinnitus is at the top of the list, most of the time. Facial numbness is right next to it. It goes back and forth which one is number one and which one is number two, depending on the level of irritation each is giving me at any given time. Interesting that near deafness isn't even on the list! It's tiring to hear that all the time, isn't it? I used to be able to get into the shower and that would make the tinnitus disappear, but sometimes that doesn't happen anymore. OHSU here in Portland has a Tinnitus center and you can google that. I haven't done anything with them, but they do have suggestions and aids. I use a fan at night, and that's all I do to help me. My husband suggested I might accompany him to a Blazer game in December. I looked at him and said, "I don't think so!". Much as I'd like to see the new Blazer team, being at the Rose Garden isn't much fun when you have tinnitus going on.
I sympathize and hope it gets better. Or that you finally can sort of shut it out. If does recede into the background when I'm busy with something or concentrating on something fun or interesting. But, it would be such a relief if the darn thing would just go away. I was bumming myself out one day thinking about this and the realization that the last thing I'll probably hear on the face of this earth as I lay dying on my death bed will be that *&%#@** hissing in my ear! >:( >:(
Take care,
Sue in Vancouver USA
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I too ended up with a new tinnitus that is related to sound coming in the hearing ear (I am now deaf on the other side but it rings with sound coming in on the good side)
Here is a link
http://www.hyperacusis.net/hyperacusis/what+is+hyperacusis/default.asp
For me it us like the hearing is gone from the AN ear and the other ear has been turned up to super high volume. The tinnitus I get in my dead ear – is directly related to the sound coming into the functioning ear.
Things like crumpling plastic bags make the tinnitus worse. Is this what you get?
I wear an earplug in the good ear – to stop the dead ear from ringing.
Do you think this is what you might have?
DHM
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D -
I also recall a post on this forum that talks about things that aggravate tinnitus; I want to say things like caffeine, stress, and fatigue, but I'm not 100% sure.
Jan
Dufreyne,
Allow me to ad alcohol to the list of things that aggravate tinnitus. Cutting back on the alcohol was the easiest for me; caffeine is a bit harder eliminate. Ginkgo has helped one or 2 forum members, but not this one.
I've had my tinnitus for about 1.5 yrs. I recall that initially it was very loud, annoying, and distracting. It was especially loud after visiting my very young nieces and nephews. They have a way of aggravating tinnitus. So I used to wear a cotton ball in my AN ear to cut down the noise intake. It usually helped.
Before my surgery, my tinnitus came in the form of many sounds. I had the buzzing, the pinging, and the crickets. After surgery, it turned into just the buzzing, which still gets loud at times. But, it's not annoying or distracting like it used to be. I'm convinced that if I could get rid of the tinnitus, I'd be able to hear better out of my AN ear--but I'm not holding my breath.
You will find that with time, you get used to it.
Syl
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You will find that with time, you get used to it.
Syl
I am at 15 months post op and not used to it. It seems I am moving to higher and higher grade ear plugs - whene in fact I am suppose to got the opposite. My tinnitus caused by hyperacusus is through the roof...
:-\
DHM
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DHM,
So sorry. I didn't realize you've had it that long. Have you tried the ginkgo? It works for some.
Syl
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Thanks for the input to all. I have noticed that the tinnitus sound volume has decreased slightly. Also, I think I'm learning to adapt to it to some small degree. Perhaps a combination of these two things will make this tolerable in the long run. I certainly hope so. I had my formal hearing test last week and unfortunately I'm totally deaf in my right ear. It was difficult to accept those words from the audiologist, but I frankly knew it all along. I guess I was hoping for a miracle. Anyway, I'm grateful to be on the other side of the operation...
Dufreyne
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Dr. D!
So glad you're back and recovering well. I'm sorry about the tinnitus--I don't have it--but my son does, he's a musician and he's done very well dealing with it. It's been about a year now. He also sleeps with a loud fan.
I hope it gets better but I'm glad you're on the mend.
Take it easy,
Marci
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I seemed to have missed this first time around, but no matter. Nice to see you back, Doc.
I can report that my tinnitus, which was not all that bad to start with, has become milder with time. It is hard to say whether the tinnitus is going down, or I am getting used to it. In fact, I'm not sure that is a real distinction, since it is all in your nerves anyway - there really is no sound, a realization that seems to help me deal with it.
I still think doing some rehab on a beach in Mexico, restoring an old boat, would do wonders for the tinnitus. 8)
Steve
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I have some of the same challenges as you after my surgery on Oct 30. I've got severe headache, fatigue, hearing loss and very very loud tinnitus. If you find a way to deal with it please share it with me. I am having a very hard time with how loud it is and it's effecting my family too.
Roger
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Roger:
My sympathies are with you. It is a very unnatural and annoying thing to experience (the tinnitus, that is). For me, it is like a drill and a loud wind combined. It can become so loud that it can actually stop me in my tracks when I'm attempting to do something. It certainly does vary throughout the day. There are aggravating factors such as: loud environmental noise (the food court at the mall is the worst), tiredness/fatigue and caffeine. Oddly, I've found that I do have some small degree of control. That is, I can do things to make the noise less intense. First, if I'm in a loud environment, I simply plug the good ear for 20 seconds or so. That seems to be just about enough time for the tinnitus to peak and begin to fade down. Second, I have tried biofeedback with some success. Interestingly, my mother actually introduced the idea to me and I have to admit, it does help. I simply think repetitive thoughts that focus on decreasing the sound, such as "The right ear noise is getting better, it is slowly going away, it is gone... and repeat for 2 or 3 minutes in your mind. I know it sounds wacky, but in all honesty, it does seem to work. I do not know the specific neurologic pathway between the frontal cortex and the auditory/vestibular system, but there must be some connection.
Also, you should know that it does seem to be slightly better now as compared to last month. It is subtle, but I do think has improved slightly. Either that or I'm just learning to deal with it better! Hope that helps.
Namaste.
Dufreyne--
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A credible physician explained to me that the hyperacusis can actually be associated with the facial nerves. We have muscles in our face that close parts of the ear to increase and decrease sound. Almost like a volume control button.
If you are around children who are overwhelmed by loud noises - their facial expression will exhibit this. True too with adults. Our facial expression can actually reduce the noise level. Children cannot control this muscle as well as adults do (sort of how they cannot wink very well when they are preschoolers) and can be more sensitive to sound…
With facial paralysis this can actually play a part with the hyperacusis.
I am hoping as I slowly regain more control over my facial muscles that the hyperacusis will ease up.
Dufreyne wrote
“simply think repetitive thoughts that focus�
This technique just might be relaxing the facial muscles and indirectly reducing the tinnitus and hyperacusis.
My question is when you get tinnitus - is it directly related to how much noise you are receiving or is it just random?
DHM
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DHM:
My tinnitus is both. When I'm in loud environments the tinnitus gets significantly louder to the point of almost becoming unbearable. However, it will also simply wax and wane by itself randomly througout the day. I also notice that if I'm experiencing worsening tinnitus, frequently, if I look around, I will then notice that some background noise is happening (ie dishwasher, water running from the kitchen sink, electric garbage disposal, etc.).
I'm not sure what to think of the facial muscle theory. My facial nerve is intact despite my tinnitus. I'm sure there are variations with each patient.
BTW you and I had the same surgeons--Jackler and Harsh. I wonder how their post-op tinnitus compares to other surgeons ;)
Dufreyne--
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BTW you and I had the same surgeons--Jackler and Harsh. I wonder how their post-op tinnitus compares to other surgeons ;)
Dufreyne--
Now THAT is an excellent question...
I do know that the sound induced tinnitus (Hyperacusis) is not typical of other AN patients I meet - either at AN meetings or on line.
DHM
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I have similar problems with my tinnitus, when in a high noise environment, my tinnitus get much, much worse. In fact, I try to avoid those things, such as concerts, busy restaurants or rooms with lots of people. I have actually had to leave before my meal was over as the tinnitus became so bad it hurt. Mine is generally ringing, but at times I have what can best be described as an explosion go off. Those are usually unexpected and have actually been loud enough to make me jump. Without a doubt, the tinnitus is the worst problem I have from my AN.
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Dufreyne--
I had a high pitched tone for about a year and a half before I was diagnosed. At first it was bothersome, but I adapted and got to the point where I didn't even notice it anymore. After my surgery it was much louder and I remember thinking - OMG - this is bad, but figured that I woudl eventually get used to it if it didn't get better just like I did when I first got it. Thankfully over the last 4 1/2 months it has gradually gotten back to the high pitched tone that it was before my surgery. It's always there, but I really don't even notice it.
Cathy
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I am still try to adjust to the very loud tinnitus that I have after my surgery. The ENT is concern about it being very loud an the pressure I feel in the left ear. Buy the last MRI doesn't show anything wrong so they are hope it's just scare tissue and the healing.
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Well my worst fears are coming true. Because, of the tinnitus and the deafness I am not hear my new baby crying. It doesn't help that he cry softly but I have been holding him and he been crying and I don't hear him! What I am I going to do?
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Give it some time. How long since surgery?
Get you hearing tested again to see what frequencies you have lost
Maybe discuss transear or baha hearing options with your ENT or neurtologist?
Know that hyperacusis and tinnitus is worst when I am sleep deprived. Know that the most sleep-deprived stage of my life was when my kids were babies. :-\ You will get a break later … and then they become teenagers wanting to drive … ;) and the sleepless nights start all over again ;D . Work with your support network to see if you can get a good night sleep- and see if you notice a change in the tinnitus.
Also know that baby video monitors are much less expensive now-a-days - and you can amplify the volume if you need to. You CAN get through this it is just going to take time to find the right coping tools to add to your tool kit.
Hang in there.
DHM
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Roger -
I don't have any advice for you; my kids were both 11 when I had my surgery; just wanted to say congratulations on the birth of your son!
Jan
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Roger~
I won't say that I NEVER had any problems with this b/c there were times that I obviously didn't hear the girlies, but OVERALL, it was OK. Do you have a partner who is there the majority of the time (especially night?). I know that I really used the "Sound & LIGHTS" monitor to help me - especially if I were doing something noisy! I think as he grows, you probably won't have any trouble hearing his cry as it gets stronger!! I'm sure you do this, but make sure he is on your good shoulder or side...Deep breath - as you both grow and adjust, it will be OK...
K
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My surgery was on 10/30/2008. I understand what everyone is saying but I just can't hear him. I know I stressing about it. But, it really worries me.
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Well, there's always the BAHA - or a TransEar.
Jan
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Hugs
You have every right to feel as you do.
Baha
I still think you should see your ent or neurotologist... they might also be able to let you try on a strap on baha gizmo sample to see if this helps.
Here is a link that explains the BAHA
http://www.umm.edu/otolaryngology/baha.htm
Sound lights
You may need something that responds to the sound- such as a light that goes off when the baby cries. The technology exists as my kids had something in their school cafeteria that lit up when they all got to loud. Sort of a sound-o-meter type gizmo.
Know that you child’s voice will change frequency as the voice matures and this could be the current frequency that you are missing at this stage of child development. The situation is not totally hopeless
Here is a PBS link about lights and other aids for the hearing impaired
http://www.pbs.org/wnet/soundandfury/culture/living.html
Here is a random light sample I pulled off the web
http://shopping.msn.com/prices/kidde-strobe-light-for-hearing-impaired/itemid790762981/?itemtext=itemname:kidde-strobe-light-for-hearing-impaired
Hear is a baby monitor for the hearing impaired
http://unitedtty.com/store/product45.html
Another
http://www.fuzing.com/qrx/vibrating-baby-monitor
We are going to help you through this… start going to Google and punch in words like
“Hearing impaired lights�
“hearing impaired baby monitors�
The above searches took me 5 minutes. Can you do this? Yes you CAN!
We are here to support you … even if it means a couple of lunch hour minutes on Google.
Hang in there and “keep moving forward�
DHM
P.S. My dog is my big helper when I do not hear the kids call or a car coming into the drive way... however I do NOT recommend that you have a puppy and a new born at the same time… way to stressful… and you have enough going on…