Author Topic: Something's not quite right here  (Read 5027 times)

Nikita

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Something's not quite right here
« on: September 19, 2010, 12:48:11 am »
They have found an AN on the left side of my brain, but I am having all my symptoms on the right side. Between the apparently rotating house I live in, I also have this perpetual whine in my right ear. Is it common to have symptoms on the opposite side the freeloader is located on? I am terrified that the surgery is going to leave me Deaf in my left ear, and I will be stuck with only being able to hear this horrendous cacophony in my right ear.

Anyone else with symptoms like this, care to offer an advice? Even those without, I am absolutely peaking at the thought of being left with only the ringing, as it is, even on a good day, I honestly consider suicide to get away from the sound.

Thank you in advance

Nika ???

Funnydream

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Re: Something's not quite right here
« Reply #1 on: September 19, 2010, 02:20:20 am »
Sorry to hear of the problems your going threw.

I don't think there are any doctors on these forums and some of your questions are what a doctor needs to answer. The problems with the opposite side of your AN for example.

I got used to the ringing. It sucks. But I just don't think about it. Like playing a video game takes my mind off it. Or mowing the lawn. There is a video of William Shatner on Youtube talking about his tinnitus that he got from working on a old episode of the original StarTrek. Watching that helped me.

I know your in a dark place as I was when the ringing started. But its not painful. Just annoying as hell. For some reason the ringing bothered me at first more than knowing I had a AN. But that ringing has taken a back seat.
Age 42, AN left, 2.8cm
left hearing gone, balance getting better.
16 hour Surgery 9-27-10 CSF leak fix 10-4-10 3 hours
Miracle I feel my left face and tongue again.
If we evolved from monkeys into humans? When do we stop being human and become something else? What would that something else be?

leapyrtwins

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Re: Something's not quite right here
« Reply #2 on: September 19, 2010, 10:00:44 am »
Nika -

we aren't doctors; you definitely need to consult with one about your concerns.  You should also consult with a mental health professional if you truly are having thoughts of suicide.

MRI images are backwards - like the negatives from photographs.  Are you sure that you - or your doc - read the films correctly?  Could this be what's causing the confusion?

The noises you are hearing (tinnitus) won't go away after treatment - either radiation or surgery.  Even if you end up deaf in your AN ear, you will still have tinnitus.

Is there are local ANA support groups in your area?  Connecting in person with others who have/had ANs is very helpful.

Also, if you haven't already, contact the ANA for their informational brochures and they will include a WTT (willing to talk) list; two very helpful resources.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

moe

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Re: Something's not quite right here
« Reply #3 on: September 19, 2010, 11:16:33 am »
Hi Nika,
So sorry to hear of your burden and the diagnoses of the AN, along with the rotating house. Too much coming at you at once. :o
You have a lot of issues going on and we are a great support group. I had tinnitus on BOTH sides prior to surgery, after surgery the deaf side is a high constant shrill.
Everyone's level of tinnitus is different. It can sound like anything from a hum to crickets to a roaring airplane or sirens. I describe mine as just below a scream. If you would like to talk privately, you can PM me (where it says to send a personal message).
I sometimes joke about how the tinnitus is driving me crazy and the only way I'll get relief is when I die. That is the only time I will have true silence. Morbid, but true.

I take low dose of xanax, extended release to help bring the intensity down, which helps. I have to stop mid day and rest, put headphones on and listen to calming music on the "good" side which seems to help.

Definitely seek some professional help. I'm one of those who has tried just about every OTC drug and also some others by the psychiatrist, and have also spent $$$ on tried and true "sucker" remedies that didn't help.
We are here for you. ;)

More specifics on your tumor size such?
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

terriann

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Re: Something's not quite right here
« Reply #4 on: September 20, 2010, 07:51:41 am »
I have had tinnitus for years, long before I was diagnosed.  At first it bothered me a lot.  Now, like muzak, I often don't notice it, especially if there is other noise.  Night time is definitely the worse.  I know other people with tinnitus and they sometimes use background noise to help them sleep -- like the sound of the ocean -- to mask the tinnitus.  I usually just try to ignore it and take lots of deep, calming breaths and think of other things.  Over time it gets easier.  It's hard when it happens to you, but every time I feel sorry for myself I think of how much worse it could be.  It's not life threatening and it doesn't affect my quality of life other than to annoy me.
diagnosed 2006 after years of symptoms 9mm X 5mm X 5mm; plenty of time to research
growth 10/2009 12mm X 6mm X 5mm; decision time
Cyberknife at Stanford 15/09/10 to 17/09/10

CHD63

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Re: Something's not quite right here
« Reply #5 on: September 20, 2010, 08:03:39 am »
Nika ......

You should definitely seek medical help when the tinnitus (and your response to it) is interfering with you being able to live a normal life.  Much research is being done on ways to retrain the brain to better ignore the tinnitus.  You need help with this!

In the meantime, try eliminating all caffeine.  Extreme fatigue and high stress level always increases tinnitus so seek whatever treatment you can to reduce those.

Like terriann, my tinnitus is always the worst at night when trying to go to sleep.  It is also bad when I am in a noisy environment (e.g. loud restaurant).  Interestingly, it is worse when I do not have my hearing aid in (I have about 20% hearing in my AN ear).  Most of the rest of the time I can successfully re-focus on something else and tune it out of my conscious hearing.

Let us know how you are doing.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

tgillesp

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Re: Something's not quite right here
« Reply #6 on: September 20, 2010, 03:12:45 pm »
Nika,

I have had tinnitus for 2 years and I know where you are coming from.  I read everything I can and try everything suggested.  Some work temporarily, but really I think the level of stress is what causes mine to be worse.  When I was first told I had an AN, it became so bad it was almost unbearable.  Now, I've been told I don't have an AN and I have already noticed it isn't as bad today.  But since I am a high school teacher it gets worse on more stressful days.  I am currently on xanax to help me sleep at night and I have found that getting more sleep helps lessen the level.  I read all I can from websites and support forums like this one.  Here are a few you can try:

http://www.ata.org/

http://tinnitussupport92262.yuku.com/

http://www.mdjunction.com/forums/tinnitus-discussions

http://www.thenakedscientists.com/forum/index.php?topic=543

I hope you can find some relief from the constant noise, but sometimes just talking to others who understand helps.
diagnosis 8/25/2010 5mm acoustic neuroma...second opinion by Dr. Chang says I have no tumor!!!