Speech Discrimination (loss) & Tinnitus - Coping Skills

[SteveS]

I was first diagnosed with a small (3mm) AN in the left IAC in May 2005.  From November 2005 to  May 2006 it increased in size to 4mm.  I know from posts on this site that an AN of that size may not be a major concern if useful hearing has been lost. 
 
The most advanced Widex digital aid could not be altered to enhance my ability to hear, nor to improve speech discrimination.  I have also tried a CROS Hearing Aid that did provide very limited ability to hear from the left side, but the negatives outweighed the very limited benefit.  Although it simulated hearing on that side, there was still the "noise" that my left ear picks up which more than offset any gain.
 
My family physician, with the concurrence of the ENT physician, has prescribed Effexor XR (75 mg) and Valium (5 mg) each taken once daily to treat the combined effects of tinnitus and background noise in the left ear.  This past week I participated in a luncheon meeting, a Cub Scout activity, and a panel discussion that were very stressful and, in a sense, almost maddening. 
 
It is very difficult to participate in group meetings or activities - - I tend to avoid these as much as possible.  Although I have been known to be very easy going, this seems to be changing significantly in both my work and home environments.
 
I am certain others have had similar problems.  Is there a reasonably high probability that surgery (trans lab) would significantly alleviate these symptoms?  I want to believe that without useful hearing, no hearing would be preferable given the problems associated with tinnitus.

Any comments or suggestions from others who have dealt with this would be appreciated.  Thanks,

Steve   

[Boppie]

Steve, I had a medium sized AN removed by Translab in Dec 05.  I had humming tinnitus and bad hearing.  Those two symtoms were all I had. Although my useful hearing in the bad side was 35%, and speech discrimmination was nil for beginning and ending consonants, it was still valulable as a summation factor.   I had no idea how useful the 35% was to me until I lost it.  Background noise was a big problem for me pre-op.  Of course I wanted the surgery to rid myself of the tumor.  But a deaf ear is profoundly impressive.  Directionality is gone forever.  Background noise becomes an issue on the good side as one ear gets the job of doing all of the "uptake".  So I don't think translab will give you much improvement for the difficulties you are experiencing.

After translab I did not lose the humming tinnitus in my head.  To the contrary, I gained more tinnitus, a jingling hissing type.  A hearing aid that I am trying for my now present SSD is pleasing as it gives me back some of the sound that people produce when they speak on my deaf side.  Again I have "summation".  But I still hear the darned tinnitus with the aid on.  It is always there for me.  When I am stressed it is worse.   

In your case I think translab would be a big surgery for a small tumor.  Why not consider an alternative treatment?  You might not lose the tinnitus though.

[Joef]

I hate to tell you this .. but "T" usually stays with you after a trans-lab ... you would think with the inner ear gone so would the noise, but it does not work that way ... its all in the brain ... the brain makes up the noise. Its kinda like phantom pain .. you ever hear about amputees with pain in the appendage that's gone .. well this is pain(noise) in the ear that's gone ...

[krbonner]

As others have said, don't have the surgery to rid yourself of the tinnitus and other problems you're describing.  While that might happen for a lucky few, I haven't yet met/heard of anyone whose tinnitus improved post-op.  My tinnitus changed, but it's not better or worse now that I'm post-op - just different.

Personally, I noticed no difference in my hearing post-op, but I had little to know useful hearing before.  I think my speech recognition score was 12%!

HTH!
Katie

[Patti UT]

Steve,
 
   My tinnitus was very bad before surgery and even worse after. my doc's told me NOT to think of the surgery as a way to get rid of the tinnitus but to save my life. The were pretty clear that the tinniuts would still be there after. They mentioned that if by some weird chance the tinniuts got better or went away they would be happy to take credit for it, but to plan on it remaining part of my life. SORRY! wish I had better news.

Patti UT

[FlyersFan68]

Before my AN was found I would be in meetings and miss out on certain important things being said especially when others were conversing. It was embarrasing at times because it seemd like I wasn't paying attention. I was just having diffiulty hearing in certain meeting rooms. At least now I can explain the reason why I missed something being said and feel more confidant now asking people to repeat things. My tinnitus was not any worse following surgery. MAYBE a little better. There are moments when it flares up but one learns to cope. I had lost speech recognition in my right ear and I believe that I was told that hearing aids will not help anyone to understand speech. It only amplifies the volume of speech and does not translate. I couldn't use the phone before surgery and one just has to accept. It takes time. My doctor tld me that when the hearing loss occurs it does not cme back. Tumor size has no impact on the amount of hearing loss one may experience. My tumor was considered small yet I would come home from work pleanty of nights complaining to my wife about the "Ringing & Stinging"! That's exactley how I used to put it. The stinging was the nasty "icepick" pains probably cause by nerve damage. It really angered me and I was going through that whole "Why Me" stage after being diagnosed for quite some time. If you need any help or information please ask. Good Luck!

[targa72e]

HI Steve,

I have a small AN as well. I initially had 80DB loss and only 64%SRT. I have been waiting and watching for almost a 1-1/2 years and the tumor has been pretty stable. Since my initial diagnosis my hearing has gotten better it is now at 50db loss and 96% srt. Most of the time I don’t notice the loss that much and can use my bad ear on the phone if I have to. In that time I developed tinnitus and started having minor balance problems further testing confirmed that I have lost 40% of my balance function on the AN side. I also found out over that first year that my AN is right next to my cochlea. Because of the location my chance of hearing preservation is less than 50% (with surgery or radiation). Overall my symptoms don’t bother me that much. I am currently trying to decide when to have treatment. Having lived with the crappy hearing I know what I am in for if my hearing gets worse. I also know that any treatment has a high probability of causing me to loose the hearing I have. Knowing  this and having lived with the crappy hearing makes deciding what to do that much harder. So for now I am continuing to watch and wait while accumulation Dr.’s opinions and trying to make a decision.

john

[SteveS]

Hi All:

I really appreciate everyone's comments, although it would have been nice to hear about a magic pill or surgical procedure.  It seems that my symptoms mirror virtually every comment and description of what each of you has experienced.

Knowing that others have it and have learned to deal with it is helpful.  I have spoken to three surgeons with different opinions and suggestions, my family physician and a general surgeon.  The general surgeon told me not to have the surgery unless I had to and, at roughly 4mm x 4mm, that is not the case.  I guess the case for surgery will be determined by the growth rate and my age (59).

Thanks again for sharing your experiences and suggestions.

[Sue]

Hi Steve

Just wanted to commiserate with you for a minute.  Tinnitus was the first symptom I had with my AN, in the fall of 2004. I would gladly give up what little hearing I have in my  left ear for silence...just like you would like to do. It's a real dirty trick that you can have hearing loss and noise at the same time.  Mother Nature was not playing fair with that deal, was she?  I have had GK treatment and, hopefully, my AN is dying, but the tinnitus is not. I know it could be worse, and even though I'd be tickled pink if the noise would simmer down, I realize that it isn't as loud as some people have. At least I don't think it is.  I went to diabetes classes when they told me I had that...I think they should have coping with tinnitus and single sided hearing loss classes too.  I didn't get much information from my doctor or audiologist for some reason. I told my audiologist I used a fan at night and she said that was a good thing.  It's just a royal pain.  I understand. If we could find a cure for this, we'd be RICH!!

Sue in Vancouver, USA

[tony]

Some tips for you :
I know that you can still hear on the good side
- you may find a lipreading skill will assist you with the limited comprehension
you are experiancing
You may find when you start classes - you are already doing it (but unaware)
It will make a difference to the % of what you actually understand
when people talk to you - just an hour a week will help
Or if you are alone in the house - watch the TV with the sound low
it will help you to retrain your eyes/brain to focus and understand
Good Luck
and Best Regards
Tony

[Desilu]

Hi Steve,

I have to agree with everyone about the constant tinnitus. My tumor was just about your size when I was first diagonsed.  I would have bouts of tinnitus a few times a year that would last for about a week at a time and then go away.  Right after surgery, I felt like I had a freight train going around in my head. As time pasted the tinnitus lessened. I am now 15 months post surgery. The tinnitus is still constant but I only notice it when it is quiet. It seems that when I am in a noise filled room the tinnitus is drowned out by background noise. Living with tinnitus is not the worst thing that could happen. I would much rather live with tinnitus than a tumor! I wish you the best!  Ann

[Palace]

Hello:


I'm leaving for a my dental "prophy" appointment.  It should be interesting getting my teeth cleaned with the somewhat loss of feeling in the cheek, gums and tongue.  (and the pain especially at the right side of the lip, today)

What I'm writing for before I leave this morning is this.............have any of you learned "sign-language" as a result of the hearing loss.  I saw sign done on a DVD at a concert once during a song.  I always thought it would be fun to learn "sign," anyway.  Do any of you know it and what is the best way to go about learning it?

Oh, one more question........can I safely have a couple of small glasses of wine with supper on Thanksgiving, do you think?  My Ct. scan is the Monday after Thanksgiving and then the Wed., Thurs., Fri., are the CK dates.  Is that too close to my appointments to have drinks on Thanksgiving.  It would sort-of be my celebration of finally getting to my Stanford dates.



Thank you for any help with these questions..........PALACE

[tony]

I am sure sign works for some - but it means others in the family have to
learn it too - with lipreading all others have to learn
is to speak slowly and clearly
best regards
tony

[SteveS]

Sue, Desilu, Palace & Tony:

Thanks for the comments and suggestions.  My audiologist recommended lip reading a couple of years back.  She said it should be helpful, especially if friends and family understood that they should not turn or walk away from me while they continued to talk. 

When I am in a group setting, I find that I must work to focus on one individual only, it is not possible to listen and understand more than one person.  It sounds simple enough, but focusing can be very trying, especially with large groups and backgroung noise, aka restaraunts.

Communicating with others who can understand the problem is helpful.  I don't know about you, but I hate trying to explain what's going on to someone that you cannot reasonably expect to understand. 

Thanks again.

Steve

[Boppie]

Steve, I've used lip reading for the past five years or so.  It got me through the 65% loss in my AN ear.  I really didn't feel I did badly.  But I had stopped going to many of the monthly group meetings that I previously enjoyed, because one can't lip read in a group unless the speaker is right in your face.  The background noise is so bad. 

Post op I experienced almost the same difficulties with one added loss, that is directional information.  I am quite a bit happier with a bone conduction hearing aid on my deaf side now, especially in group settings.  Background noise is easier to deal with too.  I have a programmed setting for that.  Directional source of sound is not obvious, however. 

I am not selling hearing aids.  I just want to encourage you for down the road.  There is a way to make life better after AN.