1 year Post Op MRI - Please Read....

[Jwh]

Hi!
Well my one year post op mri is scheduled for May 24th at NYU.  I'm panicking!  My "good" ear has been really bothering me.  I was diagnosed with otorslcerosis and have minimal hearing loss to low tones in that ear.  Recently I've developed muscular tinnitus where my ear is really sensitive to noises almost like my ear drum spasms.  I'm not sure if it's hyper sensitive from the SSD from the otherside or if it's related to the otorslerosis.  I guess my biggest fear would be a neuroma in the good ear.  NF2   I did have a regrowth from which the doctor said it was from cells left behind from the first surgery. 
Needless to say, I'm worried and I hope it's not a new tumor.  Geez does it ever end or will I ever get a sense of peace again?  It seems between the acoustic removal in the bad ear and now with the otorsclerosis in the good ear my ears are so sensitive...
Need some support from you guys...
Thanks.
Jen

[Lizard]

Jen,
I'm sorry you are having such anxiety, hopefully your MRI comes back with no growth and no new AN in your other ear.  You may not have peace until you have had the results of your year 1 checkup.  I hope and pray that it is unremarkable.  I also understand the sensitivity in your ear as loud noises really hurt my AN ear as well.
I'm sure once you have the results you will be able to relax, hang in there and try to take it one day at a time. 

I find it is much easier to deal with what is in front of me that what will tomorrow deal me.  Meditation has helped me to relax and brings the anxiety of my pain and deficiencies down to a minimum.  Before the AN I was your typical type A and I've really had to reevaluate and listen to what my body is telling me. I've found that I can now take it easy without beating myself up.  So the laundry will be there tomorrow and my husband can make himself dinner if I don't feel up to it.  Its hard because I am now so much different, but you must accept that you are not the same person you were before the AN, you are different and this is OK.  This is how you find the peace you are looking for this AN has changed you, but it doesn't have to be for the worse.  Its all how you perceive it.
I hope this help a little.

Hang in there,
Liz

[Jwh]

Thanks for your kind words - it does help.

My ear sensitivity is in my good ear.  That is what makes me nervous.  Maybe it's from the otorsclerosis?  I don't know.....  I need to learn that I can't control everything and it is what it is........

Jen

[Jim Scott]

Jen ~

Your angst is understandable but the reality is that, no matter how much you worry and stress yourself, the MRI will have the same result.  If the MRI scan shows what you fear, all your worrying won't change that.  Of course, if the MRI results are favorable your worrying will have been for nothing.  I'm simply speculating with no concrete evidence (only an MRI can offer that) but I suspect that your stated suspicion that being hyper-sensitive to anything untoward in your 'good' ear is what's driving your fears will ultimately be proven correct - and that the upcoming MRI will not show a new tumor.  In the meantime, I hope you'll try to focus on the positive and not allow unsubstantiated fears to control you. 

You'll be in the thoughts and prayers of many as you approach your May 24th MRI date.  Please let us know the result.  Thanks.

Jim

[CHD63]

Jen .....

I am not a medical doctor and I know next to nothing about otosclerosis.  However, several of us here on the forum have been dealing with a condition called hyperacusis following AN removal.  See http://www.hyperacusis.org/  Is there any possibility this may be in some way related to what you are experiencing?  DHM on this forum has the most knowledge about any advances on treatment for it.

Many thoughts and prayers.

Clarice

[Lizard]

Clarice,
Thanks for posting that, as I had no idea there was a name for the change in sound and sensitivity in my ear. Thanks for sharing 
Liz

[Jwh]

I appreciate everyone's input!  I think there is a combination of things going on in my not so "good" ear anymore.  I have regular tinnitus, muscular tinnitus, otorsclerosis and now I believe hypersensitivity - OH MY!
I go to NYU for my MRI May 24th so I will make sure to tell my doctor about all the new developments.
Here's is hoping for a unremarkable MRI!

[Debbi]

Hey Jen-

Just wanted to wish you good luck with the MRI. I'll be keeping fingers and toes crossed that your MRI comes out crystal clean.  Please let us know.  (I just saw Dr. Golfinos for my 2-year and was a bundle of nerves leading into it - not sure why.)

Good thoughts coming your way.

Debbi
 

[Jwh]

Deb - everything turn out clean for you? I hope so...

[leapyrtwins]

Jen -

I too was panicky before my first post op MRI.  Imagined myself having headaches and twinges in my head that I was SURE could be attributed to regrowth, but it came out clean.  I spent a lot of time worrying about nothing, but I think that's pretty typical of the first post op MRI.

Even though my results were clean, I insisted on making an appointment with my neurotologist so he and I could personally go over the CD of my MRI - basically so he could show me where the AN wasn't.

The next year when I had my 2nd post op MRI I decided I didn't need an appointment with my doc, but I got a copy of the CD and ran right home and viewed it.  By the time my doc called me to tell me everything was perfectly fine I had already learned that.

Yesterday I had my 3rd post op MRI and while I got a copy of the CD for my files, I haven't even attempted to view it.  Figure I'll wait for the doc on this one. 

I guess my point is it's perfectly normal to be worried - especially since it's so shocking to receive the initial diagnosis - but I've found that as time goes on I'm much more confident that I'm not going to be one of those 1-2% who experience regrowth after surgery.

I know I should never say never and that my chances are the same as everyone else (1-2%) but I've decided that I'm going to just take things as they come and not stress myself out.  I've spent too many hours, days, months, years, worrying about things that have never come to pass.

Hope your MRI comes back clean.

Jan

[Debbi]

Jen - yes - got the two big thumbs up from Dr G.  Which was a big relief.  

Hey, are you around this Sunday?  If so, a bunch of us are getting together at Brendan's Pub in NYC for brunch and a few laughs.  12 noon.  Would love to meet you!  If you're interested, send me a PM and I'll give you the details - or check the post in the Community section of the forum.

Debbi (still keeping fingers and toes crossed)

[sunfish]

Wow! Finally someone else on this forum with otosclerosis on top of an AN.  I was diagnosed first with otosclerosis last fall, and then the AN in January (same ear).  They don't really know if it's otosclerosis - could also be some other middle ear/conductive hearing loss problem.  I think the conductive loss thing actually causes me more problems on some days than the AN - lots of weird noises/sensations in that ear, and some days it makes me crazy.  You could simply have another conductive hearing loss problem in your "good" ear.  They can actually rebuild your middle ear if it gets bad enough.  Since both my problems are in the same ear, I'm afraid the fate of my hearing on that side is cursed!

[Jwh]

Hi Jan!
Thanks for your response.  Unfortunately, I was that 1-2%.  I had a regrowth and had that removed last year.  I've been through the retro. approach and translab surgery.  I guess that's why I'm really on pins and needles.  Now my good ear is acting crazy on me.  It just seems to never end!

[jerseygirl]

Jen,

I hope your MRI turns out entirely clean! I also can attest that my good ear is hypersensitive to all sounds and even hurts when they are loud, like sirens or fire alarms. This is normal, it's our body's way to deal with SSD (it was called hyperacusses in a previious replly). It does not mean much by itself, so don't worry.

                   Eve

[Jwh]

Hi Eve!
thanks for the response.  Question for you - lately my ear is more sensitive to normal noises and even spasms with a loud tone.  Do you ever get this?  I think I might have muscular tinnitus with it as well.  I have some rhythmic clicking and popping. 
Thanks,
jen