Update and Question re: Post Surgical Tinnitus

[4cm in Pacific Northwest]

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

[Rick Everingham]

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.

[Dog Lover]

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

[Roger64]

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.

[Roger64]

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?

[4cm in Pacific Northwest]

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  . 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

[leapyrtwins]

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

[Kaybo]

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

[Roger64]

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.

[leapyrtwins]

Well, there's always the BAHA - or a TransEar.

Jan

[4cm in Pacific Northwest]

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…