Author Topic: Is this normal????  (Read 3695 times)

tenai98

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Is this normal????
« on: September 12, 2008, 02:12:13 pm »
Ok, its been only about 3 weeks since my diagnosis, but I kinda knew beforehand. So here is my question...Right now I feel nothing. Not scared, not panicky....Maybe its because I'm in wait and watch mode??? Maybe cuz I kinda decided that if this "squatter" grows I at this point have decided on surgery????  Why am I not feeling the anxiety that others are feeling???  Mind you I am obsess with reading all that I can on ANs....But still, shouldnt I be feeling something??????  Maybe it will hit me when it comes down to the crunch?????

JO
14mmX11mmX11mm left ear
TRANSLAB 04/07/09 2cms at time of surgery
Dr. Benoit and Schramm, Ottawa Civic Campus
SSD ,some facial numbness
Baha surgery sept 22/09
residual tumor 13mmX7mmX8mm
2016 new growth.  25mmX21mmX22mm
cyberknife on June 7

lori67

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Re: Is this normal????
« Reply #1 on: September 12, 2008, 02:25:13 pm »
The more posts you read, the more you'll realize that everything is normal - and nothing is normal!

I wasn't in panic mode either after my diagnosis.  I don't know why.  I probably should have been, but I wasn't.  I just looked at is as "this is what it is and this is what needs to be done to fix it, so let's do it and get on with it".  I had my surgery about 5 weeks after my diagnosis, so maybe I just didn't have enough time to panic.  I was also very busy at the time packing up my parents house out of state after they moved into assisted living on top of all the normal day to day stuff, so I think that served as a distraction.  I'm glad it did.

I didn't get the jitters until the night before, but even that didn't last too long.  So, don't worry that you're not worried!   :D

Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

lacey7

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Re: Is this normal????
« Reply #2 on: September 12, 2008, 03:22:05 pm »
I agree with Lori.  Everyone is different, and it's good that you aren't panicking.  There isn't anything you can do about it, b/c it's there.  I only got nervous the night before.  The day before, I was with my daughter (who came from out of town) in a casino!!!!!  I was winning money, and the thought came thru my mind that "tomorrow I'm having brain surgery"!!!!!!!!!  WOW.  How can that be?  I'm having fun. 
In fact, I have a funny story to tell.  A good friend called me on my cell phone while I was at the slot machine.  I answered it, and he said "I want to pray for you"!!
I said "ok"......(I hated to tell him where I was).  LOL.  I did have to tell him b/c of all the noise, but I bent my head down, while he prayed for me, then he said "ok, pull the handle".  I did .............and won $50.00 in quarters!!!!!!!  LOL.
So, back to you.........it's good that you are doing fine.  There's nothing wrong with that.  You are normal.
I'll be praying for you.
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.

MAlegant

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Re: Is this normal????
« Reply #3 on: September 12, 2008, 04:21:47 pm »
I did exactly the same thing.  I was not fearless mind you, I just focused on problem solving and getting through it.  It didn't really hit me until after, which, I think, was a really good thing in hindsight.  Everyone reacts in such a different way! This is as normal as it gets when you have a brain tumor.
Good luck,
Marci
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

Nancy Drew

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Re: Is this normal????
« Reply #4 on: September 12, 2008, 05:58:50 pm »
Hi Jo,

I might be off base, but I read some of your past posts, and I see that your son recently deployed.  My son is going in Nov.  He just found out a couple of weeks ago, and since then I can't figure out what to do with my emotions.  When I think about the whole situation with my son, I just go numb, and maybe that is what is going on with you . . . just a guess.  And, as soon as I get anxious about my upcoming GK, I find myself switching over to thinking about my son.  My AN seems to take back seat.  Hang in there.  You might be on emotional "shut-down" as a way of protecting yourself.  Hang in there, and I am keeping you and your family in my prayers.

Nancy
12/05 AN diagnosed left ear 4.5mm
06/08 6mm
Gamma Knife 10/21/08
1 year MRI  6.8mm x 5.5mm
2 year MRI  5.9mm x 4.9mm
3 year MRI  6.5mm x 6.0mm 
Slight Hearing Loss Post GK

Swedish Gamma Knife Center
Englewood, CO
Dr. Robert Feehs

wendysig

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Re: Is this normal????
« Reply #5 on: September 12, 2008, 08:49:44 pm »
Jo,
I have to say when I first found out I had an AN I was panicked.  The more research I did and the more I posoted on this forum and read the posts the more certain I was that I had made the right decision.  Making the decision on what to do is the hard part-- once the decision is made things calm down.  I felt normal but not normal and more curious than afraid  I needed information, I needed answers to my questions not out of fear or panic but because I needed to understand what was happening to me, what could be done about it and what I might be facing  Once my quetions were answered I felt very calm.  It was kind of weird and comforting at the same time.  This might be what you are feeling.

Wendy
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

Jeanlea

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Re: Is this normal????
« Reply #6 on: September 12, 2008, 10:18:57 pm »
Jo,

Everyone reacts to news of this type in different ways.  Just as each of our ANs are different so our our reactions to the news.  I got the news from my local ENT on a Wednesday and met with my surgeon that Friday and had surgery scheduled.  I guess I didn't have time to be nervous.  To be honest, I was a bit awed and then thought of it as a new adventure.  In hindsight, I wish it was one adventure I could have passed up.  But all in all, I'm doing quite well now.  Enjoy the peace you are feeling.  It's okay not to be stressed. 

Jean
translab on 3.5+ cm tumor
September 6, 2005
Drs. Friedland and Meyer
Milwaukee, WI
left-side facial paralysis and numbness
TransEar for SSD

leapyrtwins

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Re: Is this normal????
« Reply #7 on: September 12, 2008, 10:29:37 pm »
Jo -

as others have said, there is no "normal" reaction to an AN diagnosis.

I was initially in shock  :o  Then I was confused by the various treatment options and which one was right for me  :-\

But once I made my treatment decision I was just ready to have the surgery and work towards recovery  :)  I just made up my mind that it had to come out and the only way it could come out was through surgery.  I scheduled my surgery within a week or two of my diagnosis and it was only about 6 weeks between the time I was told I had an AN and the time it was removed. 

I was very calm the morning of my surgery; although I was nervous.

My family - parents, siblings, and children - worried more than I did. 

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

28Lisa

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Re: Is this normal????
« Reply #8 on: September 13, 2008, 09:14:28 am »
When I was first diagnosed I was in denial, then I got a second opinion and iy was confirmed.............wasnt panicky...

My biggest fear was being admitted to the hospital for 3 weeks prior surgery cuz I HATE needles....but when I got in the medical staff was so nice almost felt like I was in a hotel lol had my own room, bathroom, cable, phone and an awesome view I think they put me there to eliminate anxiety too, so you can request that when you go in

Oh when getting those hep shots (blood thinners) dont let the nurse stick you in the tummy
A.N. 4+cm, 9/11/07 @ NY Presbyterian Hospital, Dr. Phillip Stieg
post opt - partial facial paralysis on left side, total hear loss on left side, speech altered, loss of taste, smell,balance, loss of sensation on right side from shoulder down, low motor skills, eye weight 11/07

Omaschwannoma

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Re: Is this normal????
« Reply #9 on: September 13, 2008, 11:07:17 am »
For me, the calm came when I accepted my dx, made decision on tx and kept telling myself there's always someone worse off than me, heck I was so busy worrying about my father being rushed to hospital, 4 months before my date, for emergency surgery on gallbladder, then my mom was next for her surgery-she was diagnosed with breast cancer, my MIL was having a rough go of being a new widow with heart palpitations, then to add to the whole mess my hubby shows up with shingles!  I couldn't wait to get in to surgery for some peace and quiet--WOW was I wrong! 
1/05 Retrosigmoid 1.5cm AN left ear, SSD
2/08 Labyrinthectomy left ear 
Dr. Patrick Antonelli Shands at University of Florida, Gainesville, FL
12/09 diagnosis of semicircular canal dehiscence right ear

Jim Scott

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Re: Is this normal????
« Reply #10 on: September 13, 2008, 01:28:42 pm »
Jo:

I think we've firmly established that the word 'normal' is not really a part of the vocabulary when discussing acoustic neuromas.  :)

Your sanguine attitude toward the knowledge that you have an acoustic neuroma is certainly not worth being concerned about.  That you know it's tiny and have pretty much decided on how to address it allows you to compartmentalize it and so, reduces your anxiety level where this issue is concerned.  Enjoy this stress-free period but realize that it may not last indefinitely although I hope it does.

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.

lori67

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Re: Is this normal????
« Reply #11 on: September 15, 2008, 10:20:44 am »
Lisa,

You might have mentioned it already somewhere else - but why were you in the hospital for 3 weeks before your surgery?  I've never heard of that happening before.

I guess it's a good thing it was like a hotel or you might have wanted to check yourself out of there before your surgery!

Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

mk

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Re: Is this normal????
« Reply #12 on: September 15, 2008, 11:18:36 am »
When I was first diagnosed my doctors didn't give me any sense of urgency (which from what I have heard on this forum does happen in Canada). The neurosurgeon I consulted told me that eventually I would need surgery, but could have it in a few years time. Well, from what I know now this was wrong, given that my initial MRI report stated a size of 2.4 cm, but  back then I didn't realize that. I took what he told me at face value and I really didn't take the situation very seriously. Mistake No. 1, I didn't do my research back then.

I did start to worry when I had a sudden hearing loss a couple of months after my diagnosis. My ENT made me very worried, saying that ANs do not behave this way (wrong again). So, this is when I started to do some research. At the same time I was referred for consultation with the radiooncologists at the GK centre in Toronto. Based on what they told me was that I was a good candidate for GK; they didn't state any concerns about size/location etc. other than the remote possibility of cancer in the long term. Coming back to the original neurosurgeon for the second consult, he said that he would chose radiation and that the radiooncologist had sent a report stating that "he would be happy to go ahead with the GK".  Mistake No. 2, I didn't request more consultations. Given this information, I chose to go with GK. It was a terrible time for me to have surgery, both for family reasons and at work. So I scheduled to go ahead with the GK treatment.

Fast forward to the month prior to GK. I get a much delayed second MRI and this time I look at it myself. To my dismay I realize that the size was significantly bigger than the original report (about 2.9 cm). Initially I thought that it is some wacky growth, but then went back, requested the original MRI disk (mistake No. 3, I didn't have a copy). I looked at it and figured out that the original radiologist report was wrong. I could also definately see the distortion that the AN was causing. To top it all up, the doctors held a conference a couple of days before my scheduled treatment, and a couple of them came back with some concerns about the size/distortion etc. and suggesting that maybe I should do some more consultations. In the meantime I had organized everything, brought my mom from Europe to help with the kids etc. Eventually I went ahead with GK as originally planned, which I would have probably done anyway (you know the gut feeling thing), but for sure this last week prior to treatment was the most stressful one of my life.

So, even though I had initially "browsed" through the diagnosis and the decision stages, at the last minute it felt like it was the first time I really realized what I was facing - like a "delayed" diagnosis.

I am saying all this to point out that I also didn't feel anxiety initially, but for the wrong reasons. I think that you are very well informed and know exactly what you have to deal with, so when the time comes you will know it and will make the right decision.

Marianna

GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.