Author Topic: Newly Diagnosed and confused  (Read 3355 times)

Twindy

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Newly Diagnosed and confused
« on: January 26, 2012, 10:20:45 pm »
Hello,
I was just diagnosed on Tuesday.  I went in for a hearing test and came out with this news.  I'm at the University of Iowa with Dr. Gantz.  He's recommending surgery and fairly soon.  I wanted to wait until June as I have summers off, but he wants to do it sooner, so I'm scheduled for Feb. 17th.  When asked about radiation, he dismissed it and showed me lots of data to support surgery.  But the thought of someone moving my brain to perform the surgery scares me!  Should I be looking into other options?  He made is seem as this was my only real option.  I am 40 yrs. old.  The tumor is 11x4x6.  I have mild hearing loss, some pressure, but no other symptoms. 

mindyandy

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Re: Newly Diagnosed and confused
« Reply #1 on: January 27, 2012, 07:03:32 am »
With that size my opinion is that I would not rush into anything. Take your time and explore your options.  :)

Mindy
14mm dx 9/07. CK done Seattle  1 year MRI showed some shrinkage. 4 year MRI 2mm growth nothing conclusive. Trigminal nerve involvment Retrosigmoid Friedmand/Schwartz HEI March 7,2012

Cheryl R

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Re: Newly Diagnosed and confused
« Reply #2 on: January 27, 2012, 08:29:27 am »
Twindy,    There are several of us who go to Gantz.      He can be a bit pushy in talking to people.     He is a surgeon so pushes what he does which is surgery, but the choice is yours!        I have NF2 and have had 4 surgeries.      Are you a fellow Iowan?  I am in central Iowa.      I will pm you also.          If he is saying mid fossa, then he may be saying sooner than later for better chance to save hearing.    But the choice is yours also for what time is best for you.      I would say you could wait and if see if your symptoms are worsening, then go for it.         Part of how well ones does can depend on tumor size and its location and what damage to a nerve is being done.           
The normal after surgery is for most,living with possible loss of hearing on one side or SSD.      Some balance issues which for most improve and may only bother you some in the dark or very tired.             Those who have facial issues but for many this is only temporary.
Those with larger tumors and esp have pressed on the brain stem can have more long term issues.         You will still be yourself after surgery. There can be some cognitive issues for some but this is not everyone.         The forum here can appear that everyone has severe problems but many do well and are back to their usual life and are gone after recovery.      Their new normal can be the SSD or putting up with fatigue for a time which is very common post op.   This gets better in time.    It is very scary to find out one has an AN  but there is life after surgery.        You do have time to decidse what is best for your own situitation!                         Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

cindyj

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Re: Newly Diagnosed and confused
« Reply #3 on: January 27, 2012, 09:36:27 am »
Hi, again, Twindy...as Mindy and Cheryl said, with that size tumor, you should have time to do some research and decide what type of treatment you want.  Perhaps even get second, third opinions...But, it is ultimately up to you!  There are many here who have had radiation treatment which much success.  I wouldn't rule it out if you are interested in it.  Look around here a bit and contact the ANA office for materials, if you'd like.  And, be sure to ask any other questions you may have.  Between all the folks here (though we're not docs), someone is bound to have an answer :) 

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

Twindy

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Re: Newly Diagnosed and confused
« Reply #4 on: January 27, 2012, 05:38:25 pm »
Thanks everyone.  I've made a call to my Dr.'s office that I would like to meet the Radiologist, so they will set that up for me next week.  Over the weekend, my husband and I will continue to research on the web, but I must say, it is all confusing to sort through. 

chloes mema

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Re: Newly Diagnosed and confused
« Reply #5 on: January 27, 2012, 05:54:35 pm »
Twindy, like the people posting here, I suggest researching further and getting at least a second opinion.  (I sought out a second doctor & opinion and am much happier with the results.  As I've read, go with your gut!)  If you read enough posts you'll learn that the more information you get the better.  The tumor size sounds to me like you have time for this.  Don't "short change" yourself by going for the first offer made.

Karen
Diagnosed October 2011
Oct '11-9 X 6 mm left ear
Mar '12 - 1.25cm
Tinnitus, imbalance, and mild dizziness (ditsy)
My AN = Annoying Nuisance
Jan'12 W&W
May'12 CK completed
Oct'12 hemifacial spasms
Dec'19 It's back

james e

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  • 70 years, 1.7cm, trans lab Mar 2010, BAHA 5
Re: Newly Diagnosed and confused
« Reply #6 on: February 04, 2012, 09:31:30 am »
Tumor size is not important. Location, location, location is important!

You need more information. Make your doctor explain why February is more important than June. Is there some medical reason that makes this earlier surgery more necessary? That's all that really counts. We are only talking about 5 months.  If there is a medical reason, YOU need to make a decision...it is your head, not your doctors. If there is not a medical reason, then I might begin to disbelieve your doctor. You can always send your MRI to another doctor and get another opinion.

James

 


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