Author Topic: how much did AN bother you BEFORE surgery or radiation?  (Read 5147 times)

Keri

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how much did AN bother you BEFORE surgery or radiation?
« on: December 13, 2008, 12:08:17 pm »
Hi,
I found out about my 1.5 AN about a month ago; have translab scheduled for 1/29.
When my friends and family used to ask about it, I'd say something like, "I feel great - just have some hearing loss, full feeling in my ear, some ringing, some off balance feelings sometimes." Besides these issues, which really didn't hurt or cause pain, etc, I really did feel fine.

I'm increasingly feeling NOT so fine sometimes! I don't know if it's just knowing that the AN is in there or what. I have more headaches (used to rarely have them), but they're not bad, just there and more frequent. My balance really feels increasingly worse from time to time. My head feels more and more weird / wonky / whatever (when i read about the wonky thing, seems to be post surgery, not pre).  I'm tired (historically, I just stay up too late; if I go to bed too early I wake up in the middle of the night and can't get back to sleep), so I can't blame this on the AN! I've never been great with words, but it seems like more often I'm getting mixed up when I talk and forget what word or thought I was about to say. I did read the balance article that ?? can't remember her name?? posted, and it seemed to explain some of this. The ringing is constant, but not loud and I've just gotten used to that.

With what I've been learning about AN's lately, I always thought that I was fine for now and I'd have problems after surgery. I thought that it didn't really affect how I feel now physically, just my hearing was mostly affected.  But lately, I am definitely feeling more physical changes in my head. I feel like my posts here aren't even coherent!

I don't know if my problems are 'all in my head' or really ARE 'all in my head' !!

Thanks for listening. I look forward to what others have felt like before surgery or radiation treatment.

Keri
1.5 left side; hearing loss; translab scheduled for 1/29/09 at Univ of MD at Baltimore
My head feels weird!!

sgerrard

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Re: how much did AN bother you BEFORE surgery or radiation?
« Reply #1 on: December 13, 2008, 12:32:07 pm »
Hi Keri,

I think many of us experienced the same sort of thing. Forgetting words or loosing your train of thought happens a lot.  :P

The general explanation is that the brain is now working overtime trying to compensate for what is going on with your nerves. It has to work to adjust for hearing and balance changes, and that diverts resources from other tasks, like short term memory. This leads to the disconcerting experience of going to the kitchen or basement or office, then forgetting what you went in there for. What was I just thinking? Can't remember. The same with conversations and other situations (like remembering the name of whoever posted that balance article). It can also wear you out, so you feel more fatigued, and are more prone to headaches.

Just try to take it easy a little, maybe sneak in a nap now and then if you can. 20 minutes of mental rest can help.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

Jim Scott

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Re: how much did AN bother you BEFORE surgery or radiation?
« Reply #2 on: December 13, 2008, 01:03:52 pm »
Keri:

Although I had a large AN (4.5 cm) my symptoms only became pronounced a few weeks prior to my AN diagnosis.  Steve (sgerrard) pretty well explained most of what's going on (the brain trying to compensate for the deficits).  In my case, by the time I discovered that I had an acoustic neuroma, my neurosurgeon was practically wheeling me into surgery so I had little time to develop any psychosomatic symptoms.  Besides, in the 3 weeks between my diagnosis and surgery, when I wasn't dozing off due to extreme fatigue, I was busy researching acoustic neuromas or posting messages here.  :)

The bottom line (literally, in this case) is that your symptoms are very likely increasing as your AN grows and expands and yes, you probably are more aware of your symptoms, now.  So what?  They're quite real, all the same.  Try to relax a bit.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

gordy

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Re: how much did AN bother you BEFORE surgery or radiation?
« Reply #3 on: December 13, 2008, 03:16:51 pm »
i actually didnt have any sympoms that i recall outside of hearing lose. have had that for years just always assumed it was wax build up. still wouldnt have gone to get it looked it had it not been from the urging of my parents. glad i did i guess. 1.5 by 1.5 an had gamma july of 2007 next week year and a half mri and other tests.

leapyrtwins

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Re: how much did AN bother you BEFORE surgery or radiation?
« Reply #4 on: December 13, 2008, 06:05:47 pm »
Keri -

my AN didn't bother me at all post diagnosis.

My major symptoms were feeling of fullness in my left (AN) ear and diminished hearing - basically muffled sounds.  My biggest issue was not being able to hear so good when I answered the phone.  Didn't really phase me much; just mainly aggravated me  ::)

In fact it took me 3 months to even mention my symptoms to my internist and even then I mentioned them to him in passing.  He subsequently sent me to my ENT.  My ENT ordered a diagnostic MRI and referred me to a neurotologist.  My neurotologist was somewhat shocked to hear I had diminished hearing for 3+ months before I decided to find out why, but like I explained to him, I just figured it would get better and I had "more important things" to do than get my ears looked at.

Guess next time I have an "annoyance" like an AN, I'll get it checked out more timely  ;)

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

LisaP

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Re: how much did AN bother you BEFORE surgery or radiation?
« Reply #5 on: December 13, 2008, 06:15:45 pm »
Hi Keri,

I was dx in March 08 and during that time my symptoms were mild.   But as time has gone on they have gotten a little worse.   My next MRI is scheuduled for Jan 09, I am still on the watch and wait.  Hang in there.  I too feel like it is just enough to make it through the some days.  Take care and stay in touch.

LisaP
LisaP
AN at 12mm by 7mm by 7mm,  shown no growth as of September 26, 2013, 5.5 years into this journey.  Next MRI 2015. Doctors: Mason and McKenna.  Continue to W&W

lacey7

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Re: how much did AN bother you BEFORE surgery or radiation?
« Reply #6 on: December 13, 2008, 09:57:57 pm »
Hi Keri,
Before I found out I had AN, I had loss of hearing (noticed it when I kept telling my hubby to turn up the TV), and also when I listened to my IPOD, and just decided to put just one ear thing in my bad ear, and couldn't hardly hear the music!  That was when I decided to go to an ENT doctor.  I found out I had lost 45 percent of my hearing in my left ear.  I certainly didn't want to hear I had AN, but was kinda glad to hear what was causing my hearing loss.  I wasn't THAT old!!!!
I also did have some pain in that ear before I found out.  I also did notice some balance issues when I would take my grandkids to swimming, and had alot of trouble going up and down the bleachers!!!  I thought that was alittle weird, but it was in passing.  When I found out.....it put all my symptoms together.  I wasn't crazy!!
I also had tinnitis.  So, all the symptoms, basically.
After surgery, I still have ringing in my ear, and some balance issues, but not many.  I was just happy to get the surgery out of the way.
Please take care of yourself.....and as other people here have said....do things for yourself.
Keep asking any questions you have.  This was a good one!
Lacey
Diagnosed 4/15/08.
AN - 1.4 cm.  Translab surgery 6-26-08.  SPF leak 7-5-08, and went back into surgery 7 -6-08.
SSD left side, after surgery
Dr. LaRoure - Providence Hospital, Southfield, MI.

Brendalu

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Re: how much did AN bother you BEFORE surgery or radiation?
« Reply #7 on: December 14, 2008, 05:36:47 am »
My hearing was perfect.  My balance was way off and I had dizziness.  Since surgery, I have lost all hearing in right ear, still very dizzy, balance is still way off and I have lymphedema, and migraines that I didn't have prior.  Before was much better.

Brenda
Brenda Oberholtzer
AN surgery 7/28/05
Peyman Pakzaban, NS
Chester Strunk, ENT

cindyj

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Re: how much did AN bother you BEFORE surgery or radiation?
« Reply #8 on: December 14, 2008, 02:00:11 pm »
Hi Keri!

About six years or so prior to my diagnosis, I started with the wonky-head stuff you've probably read about here.  I just eventually learned to live with it (brain adjusted to it) and didn't think too much about it.  Then about two years prior to diagnosis, the tinnitus started.  Somewhere in there, I started having what I thought were ear infections off and on, my jaw was hurting some, etc.  I just never went to the doctor about it.  Never would have dreamed that the symptoms were due to a tumor.  I had learned to just deal/live with all of these things and probably would have continued to live with them even after diagnosis if the tumor had not been growing and "kissing" my brain stem.

As I'm sure you've already discovered, this forum is such a great place - it really was a huge help for me in making my treatment decision.  Good luck in your AN journey and keep us posted.

Cindy

rt side 1.5 cm - Translab on 11/07/08 Dr. Friedman & Dr. Schwartz of House Ear Institute,
feeling great!

"Life consists not in holding good cards, but in playing well those you do hold."  Josh Billings

jcc1138

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Re: how much did AN bother you BEFORE surgery or radiation?
« Reply #9 on: December 19, 2008, 05:50:39 pm »
Hi Keri:
Mine may have started about 2 years ago when I found that my hearing was getting worse in my right ear. I went to a ENT who stated I was getting older (40 ;) and that I needed hearing aids. I also had tinnitus and they stated it was from too much rock music, motorcycles, job, etc. I trundled off with hearing aids and was ok until 2+ months ago, when my hearing in my right ear went down the tubes. I then went in to another ENT, who ordered MRI's. I then found that I had an AN.

I have found that the tinnitus is getting worse and that the right ear is pretty shot (even after steroids). I have also found an issue with my right lower lip (feels numb all of the time) and my jaw by the right rear molars. I have great balance (do yoga 1x per week) and no other issues. I guess that I am noticing more issues, since I have some of the side effects of AN.

Let me know how things go with U of M, I thought about going there, but they could not see me until Feb and I did not want to wait that long... Good luck and keep your spirits up!

Kathleen_Mc

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Re: how much did AN bother you BEFORE surgery or radiation?
« Reply #10 on: December 20, 2008, 02:08:48 am »
In the four years I was mis diagnosed I suffered major headaches, insomnia, facial numbness those were my "complaints" and was during the testing to see if I had MS that they found I was 50% deaf in the one ear and then the tumor was found. In the week and a half I waited for surgery I didn't experience any increase in symptoms but I likely wouldn't have noticed it if I had.....I was in a state of shock and the time frame is really kinda blurry even in my memory now.
I would think maybe some of what you're experiencing is an awareness of what was already there, you may be just noticing it more now. Possibly the stress and anxiety of diagnoses has increased the symptoms as well.....or they symptoms are just worse now.....whatever the case try to get lots of rest and that may help.
Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)