I'm Out of Tune

[teasely]

You guys, I'm really going to need some reassurance here.  As you might know, I completed my CK last week.  I feel OK generally, except for some headaches (but I had headaches before, and at least some of them appear not to be related to the AN).  Anyway, my hearing pre-CK was excellent.  I suffered only from very occaisional distortion when in a loud room. 

The day after my last treatment, I noticed that when I listen to music, it sounds out of tune.  Seriously, it's like being in a Twilight Zone episode.  While I expected the possibility that my hearing would suffer, no one alerted me to this!  I can use that ear to talk on the phone, etc., and speaking voices do not sound different to me. 

Music is a huge part of my life, and I cannot express how depressed this is making me.  Could this possibly be some swelling issue that might resolve?  Could me hearing get worse and "even out?" 

[Mark]

Teasely,

it very well could be related to swelling post treatment or just nerve irritation specific to the radiation impact. I would certainly suggest alerting your care team at Stanford to get their perspective. In my situation I had numerous occassions up to months after treatment where either the tinnitus would suddenly elevate dramatically or my hearing would seem "funny" or worsened for a day or two. These were all transitory episodes and my hope is that is what is happening in your case. Unfortunately, anything is a possibility this early after treatment and it is really hard to determine how much the hearing will be impacted , if at all. The percentages would be in your favor, but none of us know where we'll land in terms of final outcome. At this point, I would take the position that treatment reactions will be occurring over the next period of time and not get overly concerned yet that it is a permanent situtation

Mark

[ppearl214]

teasely,

I was given a heads up on this in advanced (in my research and chats)..... I knew my hearing was going to be weird (heck, day 1 and already feeling "full ear" and hints of enhanced tinnitus)..... as it's real soon, know that with the decadron and with rest and with a deep breath, this will pass... heck, I'm right on your heels and now... we are officially going through this together!  I'm here for you!

xoxox
Phyl

[DistressedDB]

Teasely,

I had my CK back in December 2005 - and yes, I also had the same distortion.  In fact, someone dropped a plate in their kitchen and it shattered - I had never heard anything so piercing in my entire life (I felt like a dog that hears high pitched sound - it hurt!).  It does seem to be related to the expansion of the tumor in the initial recovery.  Four months post my procedure, I can tell you it is MUCH better...  Hang in there, it will improve, music will start to sound great again!

[teasely]

So, Distressed, you had the "out of tune" thing?  Glad to hear that it might be temporary.  It sounds like I'm hearing stuff a 1/4 to 1/2 tone flatter in my left ear.  No tinnitus at all, and everything is loud and clear, just jumbled and weird. I'm putting a call in to my docs today. 

[ppearl214]

teasely,

Had to check on you and see how you are doing.  As I go into day 4 of CK, I admit that my hearing is very sensitive right now (they really got my hearing nerve on Day 2 but weathering it well). Had to put cotton in my ears last night as sound is very sensitive right now as is the tinnitus. But, in my research prior to treatment, I had a good heads up on what "may" occur so nothing came as a shock to me... and I was able to just go with the flow. Day 1, I did have a slight low grade fever, but remembering you ran into it too, I called the resident on call and took 1 tylenol to reduce it.. which worked great! :)  No low grade fever since.   

Hearing is the only thing sensitive now and as you and I go through the swelling together, the sleepless nights due to the dang decadron and knowing that you and I are just about neck and neck on our treatment progression, know that not just me but many here walk the walk with you... and that we are going to be here through thick and think as the CK does it's trick. I know the swelling will go down. I know the sensitivity to sound will hopefull diminish. May any potential facial numbness weaken over time but know this... I'm here with you and we are going to rawk and beat this thing!   

Hang tough with me... just as I am hanging tough with you!

Phyllis

[teasely]

Finally heard from the nurse.  She seemed to think it could be swelling, and temporary.  They have never had anyone with this particular hearing issue, however, and they have treated musicians.  How annoying to be unique!  I'm to try 800mg ibuprofin 3X/day and see if that helps. 

A bit of internet research reveals that my condition has a name: diplacusis. 

[SuzeAN]

HOw are you doing now?  Right after my 2nd day of CK, when people spoke to me it was like an echoing vibrating effect on my AN side, almost like someone talking to me underwater.  That went away in 24 hrs, the doctor said it was unsual, but it could be related to the nerve being irritated.  Thankfully it went away, but my tinnitus remained.  Hopefully your situation is temporary too.

Cheers,
Sue

[ppearl214]

Sue,

I hear you on the "echoing".. gawd forbid a siren drove by me, a motorcycle, etc. I'm only less 1 week finishing CK but still exceptionally sensitive knowing the hearing nerve was hit (my AN in bony canal).  Tinnitus more enhanced but noticing more "muffled" sounds now too, especially when on the phone.

Phyl

[SuzeAN]

Phyl,

Did the doc say that was a temporary sympton? I think I had a bit of muffled hearing the first week on and off; so far
its 6 mos. out, I don't think my hearing has changed in that ear..there was minimal hearing loss before CK;  and I can tell
when I am watching TV if I am laying my head on the pillow with my right ear down I have to raise the volume 2 notches
to hear with the left ear.  (Wonder if I will hear the Easter bunny???)

Cheers,
Sue

[teasely]

Thought I'd give you an update.  I think that the hearing thing is getting better.  I listened to my ipod in the car yesterday for about 45 minutes, and try as I might to hear something odd, it all sounded pretty good! 

I have been experiencing little episodes of head pressure, feeling as if my head is a balloon, and someone is pumping air into it.  This happens most often when I get up from sitting or lying down.  Lately, I've been feeling it more frequently and with more intensity.  In the last day or so, it's accompanied by pain as well, in my whole head as well as in my neck.  So, I put a call into my team, and I'm now going on Decadron, 4mg three times a day, and then a taper.  The nurse practitioner is confident that this will help relieve these symptoms. 

Thanks for your support and kind words!

[DistressedDB]

Teasely,

I also experienced pain on occassion.  The "white" noise seems louder than prior to the procedure, and I still have episodes where things are slightly out of tune - but as time has gone on, the "out-of-tune" and the pain have decreased.  I go in for my first follow-up MRI next Monday...I am excited to hear the results (I'm optimistic they will be great!).  Keep listening to your iPod...it only gets better!  Keep us posted!

[ppearl214]

Hi Sue,

Oh, I think I am in the mirror situation as you!  1 week post treatment and my hearing in my left AN ear is actually about the same as pre-treatment but a bit more tinnitus. I think it's too soon to tell in my case as swelling is still occuring but having faith that if this is the worse I can experience now, boy, VERY tolerable for me.

Teasely, thrilled to hear the update! I bet that IPOD is sounding real good about now!  Waiting to up the volume a bit on my stereo as well.. still too "sensitive" to do so but I'm gonna sing along with you and that IPOD!

Phyl

Phyl,

Did the doc say that was a temporary sympton? I think I had a bit of muffled hearing the first week on and off; so far
its 6 mos. out, I don't think my hearing has changed in that ear..there was minimal hearing loss before CK;  and I can tell
when I am watching TV if I am laying my head on the pillow with my right ear down I have to raise the volume 2 notches
to hear with the left ear.  (Wonder if I will hear the Easter bunny???)

Cheers,
Sue

[teasely]

Just an update.  As I reported last week, my hearing issues have now resolved completely (hopefully permanently!).  I can now hear music perfectly, for which I am very grateful.  In addition, the Decadron seems to have cleared up my head pressure.  I'm staring my taper today, and I'm also happy to report no bad side effects from the steroid, perhaps only a little trouble sleeping at times.   

Thanks again for all your support!

[ppearl214]

teasely!

FAB news... in time... in time...

Hang in there and enjoy your music listening pleasure!

Phyl