Author Topic: Not yet diagnosed but scared to death  (Read 10193 times)

AN wife

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Not yet diagnosed but scared to death
« on: November 11, 2006, 01:32:52 pm »
Hey, guys.

My husband just found out yesterday that AN may be a possibility.  Will have an MRI next week.  I've been doing a lot of research because he is understandably freaking out.  His doctor basically told him that if he does have AN, they will do surgery and he will definitely lose the hearing in that ear.  From what I've read, though, that is not always the case.  It seems we'll have to look around for a second opinion.  I was just wondering how many of you completely lost your hearing after surgery.  He's very concerned about his job, where verbal communication is 99% of what he does.

Thanks!

Mark

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Re: Not yet diagnosed but scared to death
« Reply #1 on: November 11, 2006, 01:54:28 pm »
AN Wife,

If the MRI confirms the presence of an AN the key issue with both treatment option selections and hearing preservation outcomes will be size. In terms of treatment options, if the AN is 3 cm or less you should explore both radiosurgery and microsurgery. In microsurgery                                    , Hearing preservation rates are typicaly size driven. If the AN is small, less than 1 cm, the rates are better that useful hearing can be preserved than iif it is moderate or large. In my case at 2 cm the useful hearing probability was 20%. In radiosurgery, AN size is not as critical to retaining hearing after treatment, so the odds are pretty much the same across the board. One shot doses such as the gamma knife will usually be in the 60-65% range of maintaining usable hearing. FSR treatments with machines such as CK have been reporting higher at around 75%. Overall, I would say rates are fairly comparable for both surgery and radiosurgery at less than 1 cm in size and then skews dramatically in favor of radiosurgery as the size increases

Mark
CK for a 2 cm AN with Dr. Chang/ Dr. Gibbs at Stanford
November 2001

Jim Scott

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Re: Not yet diagnosed but scared to death
« Reply #2 on: November 11, 2006, 03:27:29 pm »
AN wife:

I'll have to agree that if your husband actually has an Acoustic Neuroma tumor - the MRI scan will tell - it's size wll determine the treatment.   If surgery is indicated, the Retrosigmoid Approach is usually considered as having the best chance of preserving hearing in the affected ear.   If the tumor is small enough, non-invasive radiosurgery is quite effective and has a pretty good record of preserving hearing.  Search this website for more information and until you have the results of the MRI, do not panic.  Even if your husband does have an Acoustric Neuroma tumor, they are almost always benign (non-cancerous) - and operable.  These are major factors to consider.  Please let us know the MRI results.


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.

Boppie

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Re: Not yet diagnosed but scared to death
« Reply #3 on: November 11, 2006, 05:33:39 pm »
Life will get back to normal...

In the event that surgery is the chosen route, and if the hearing is lost, the BAHA is an excellent aid to "give back" sound from the bad side. TransEar and Cros are both available as good non surgical alternatives to BAHA.

Where verbal communication is extremely important to one's livelihood, one should discuss a hearing aid plan as an adjunct to treatment of choice.

Obita

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Re: Not yet diagnosed but scared to death
« Reply #4 on: November 11, 2006, 05:46:33 pm »
Hello AN Wife:

Loosing your hearing with AN treatment is a possibility but not a for sure thing.  I would imagine either a ENT or a GP told you that.  I doubt anyone that treats AN's would ever say that without seeing your husbands MRI.  

I lost my hearing but I knew I would.  My tumor was in a spot where it was stretching my facial nerve very badly. I chose that approach and sacrificed my hearing to have the best chance of no facial paralysis.  I am just fine.

I work in a very high traffic, retail job and being deaf in the left has not caused me any problems other than not being able to tell where sound is comming from.  If someone calls my name, I must turn in a complete circle sometimes until I see who is calling me.  Everyone I work with knows this so they all call "Kathy!!  To your right!! etc..."  It works out just fine.  

Being deaf in one ear is not the end of the world.  Just a pain in the butt sometimes.  Being tumorless, is worth it.  

Best of luck to you and hopefully his tumor is in a spot where it can be radiated or surgically removed and he can retain what hearing he has.

Kathy

Kathy - Age 54
2.5 cm translab May '04
University of Minnesota - Minneapolis
Dr. Sam Levine - Dr. Stephen Haines

Laura

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Re: Not yet diagnosed but scared to death
« Reply #5 on: November 14, 2006, 02:13:34 pm »
Hi ANWife. The best and most common advice I see given on this site is to choose your doctor very carefully. The more experience your doctor has with AN surgery, the better your outcome will likely be.
 
His doctor basically told him that if he does have AN, they will do surgery

Who is your doctor? Maybe search this site and see if there are any members who have seen your doctor. Knowledge is power!

Good luck to you and your husband. I pray that the MRI results will not show an AN. Please keep us posted.

Laura
Diagnosed August 17, 2006
AN on right side 1cm x 7mm x 7mm
30% hearing loss with no other symptoms
Watching and Waiting
http://www.patient-network.com/lparr
It's mind over "matter"... even if the "matter" is in my mind

Battyp

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Re: Not yet diagnosed but scared to death
« Reply #6 on: November 15, 2006, 09:35:19 am »
Def search and consider all options.  There are hearing devices that will aid if he does lose his hearing.  I just saw an audiologist who said there was nothing to be done..once I educated her she changed her tune  LOL


nancyann

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Re: Not yet diagnosed but scared to death
« Reply #7 on: November 15, 2006, 01:43:35 pm »
Hi there - After surgery I was left with complete hearing loss right ear.  My job requires alot of phone calling to insurance co's, so I use the left ear on the phone.   The problems arise when you're in a crowded place & everyone is talking - that's the challenge - to decipher what's being said.  Also, I can't take loud noises like I use to.   My prayers are with you both, Nancy
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
right facial paralysis
good to go.

chopper

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Re: Not yet diagnosed but scared to death
« Reply #8 on: November 16, 2006, 07:15:14 am »
The problems arise when you're in a crowded place & everyone is talking - that's the challenge - to decipher what's being said.  Also, I can't take loud noises like I use to.

I second that completely.  It's getting better, but noisy places, even with background music that's a little too loud, makes for a rough time deciphering.
3+cm AN, hit the chopping block 5 Sep 06 at the Skull Base Institute
Was 4.5cm at it's largest point, completely removed.  All motor functions normal.  Only complaint is SSD on the left side, which was expected anyway.

Chillin (literally) at 76-32N 068-45W 77M in Kalaallit Nunaat

ixta

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Re: Not yet diagnosed but scared to death
« Reply #9 on: November 18, 2006, 02:51:17 pm »
ya research the hell out of it and get massive 2nd opinions, I Was in your husbands shoes 1 month ago.
You will find a sense of empowerment once you know what for sure it is.

For me so far the MRI was the scariest thing, that place is like a tunnelvision mind F@#%. I bout passed out.

ya the loss of hearing re" understanding phonetic sounds has been the worst problem for me.

in a crowded room people on my left sound like the the teacher of Linus, Lucy and Charlie Brown on the Peanuts. waa waa waaa ???
« Last Edit: November 18, 2006, 02:53:39 pm by ixta »
5cm left AN from IAC to cerebellum/brainstem.
Zapped out by Shahinian @ SBI over the course of 6.5 hrs on Monday 11/27 2006.
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macintosh

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Re: Not yet diagnosed but scared to death
« Reply #10 on: November 19, 2006, 08:05:37 pm »
Please read the following:<http://www.thejns-net.org/jns/issues/current/toc.html>. If the link doesn't work, Google <Friedman Journal Neurosurgery>. It's an article in the Nov. 2006 Journal of Neurosurgery advocating radiosurgery. There's also an editorial in support of the article. I'm getting radiosurgery in January. I was terrified at first, but I'm not now.

pearchica

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Re: Not yet diagnosed but scared to death
« Reply #11 on: January 23, 2007, 11:15:50 pm »
Hey there AN Wife : by far this is the WORSE Time- you don't know all the answers and of course you are trying to be strong for your husband as he is for you...but the beauty of this thing is that you do have time to research all your options.  I have had thee opinions and have read tons of stuff on this website and all has helped me make a well informed desicion.  Take care of yourself-Annie
Annie MMM MY Shwannoma (sung to the son My Sharona by the Knack-1979)
I have a TUMAH (Arnold Schwarzenegger accent) 2.4 x 2.2 x 1.9CM. CK Treatment 2/7-2/9/07, Stanford- Dr. Stephen Chang, Dr. Scott Soltys

Joef

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Re: Not yet diagnosed but scared to death
« Reply #12 on: January 24, 2007, 02:09:28 pm »

this was over a month old .. I bet they had the MRI .. it came back clean .. and she never returned !!
4 cm AN/w BAHA Surgery @House Ear Clinic 08/09/05
Dr. Brackmann, Dr. Hitselberger, Dr. Stefan and Dr. Joni Doherty
1.7 Gram Gold Eye weight surgery on 6/8/07 Milford,CT Hospital

ixta

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Re: Not yet diagnosed but scared to death
« Reply #13 on: January 25, 2007, 02:53:29 am »
YEah, Trader! leaving us all in suspense.
Sure hope it didnt grow out her ear or something. :o
5cm left AN from IAC to cerebellum/brainstem.
Zapped out by Shahinian @ SBI over the course of 6.5 hrs on Monday 11/27 2006.
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Jim Scott

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Re: Not yet diagnosed but scared to death
« Reply #14 on: February 07, 2007, 02:44:11 pm »

this was over a month old .. I bet they had the MRI .. it came back clean .. and she never returned !!

Unfortunately, I think this happens more than we may realize. 

Folks receive pre-diagnosis warnings from their physician about the possibility of having an Acoustic Neuroma tumor, become panicky at the thought and jump on the 'net, just as we once did.  They eventually find this site and these forums, post their questions and concerns, process the responses, then, a short time later receive a 'clean' MRI report and, relieved and elated, skip off into the sunset, as it were, forgetting to even touch base with us to relay their good news. 

Perhaps they assume we'll be jealous or something, which is hardly the case, as we all know.  I forgive them - but wish they were a bit more considerate.  Oh well.

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.

 


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