Author Topic: Newly diagonsed  (Read 2334 times)

Bee123

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Newly diagonsed
« on: March 29, 2016, 04:00:30 pm »
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Hi to all the members,
I am very thankfull for this website. I am recently diagnosed with AN 1.1mm*5mm*6mm. I am from New Jersey. I am 47 years old and trying to find good doctor in NJ area.
Sudden Hearing loss in left ear in 2/8/16
MRI Contrast :3/9/16
AN diagnosed : 3/14/16
Right now 11m*5mm*6mm
Mri 2017- no growth
Mri 2018--14*10*10
Mri 6 months 2019 18*14*11
Retrosigmoid At UCSD by Dr Rick Friedman & Dr Marc Schwartz .
Facial nerv saved , some hearing saved

Janey

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Re: Newly diagonsed
« Reply #1 on: March 31, 2016, 11:32:32 am »
Sorry you have had this diagnosis.  You will find a wealth of information and support
here on this forum.  I am from WV, not familiar with a doc in NJ, but someone will be.
Best of luck to you on your AN journey.

mcrue

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  • Greg Mech
    • gregmech26
Re: Newly diagonsed
« Reply #2 on: March 31, 2016, 12:49:48 pm »
Dr. Douglas Kondziolka from Ny has an excellent reputation if you're considering Gamma Knife radiosurgery radiation treatment.

Not too far from New jersey.
5/19/2015 - 40% sudden hearing loss + tinnitus right ear

6/26/2015 - AN diagnosed by MRI - 14mm x 7mm + 3mm extension

8/26/2015 - WIDEX "ZEN" hearing aid for my catastrophic tinnitus

12/15/2015: 18mm x 9mm + 9mm extension (5mm AGGRESSIVE GROWTH in 5 months)

3/03/2016:   Gamma Knife - Dr. Sheehan

v357139

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Re: Newly diagonsed
« Reply #3 on: April 06, 2016, 06:25:40 pm »
Hello.  Sorry to hear your news, but welcome to the club.  You did not say whether you were interested in radiosurgery or traditional surgery.

It can help if you educate yourself on those two options, and then consult with very experienced surgeons for those respective choices.  For instance, Dr Kondziolka at NYU has a great name for radiosurgery.  But if I wanted the best consults for regular surgery, I would go to Roland/Golfinos at NYU, or Selesnick, who works at Weill/Cornell and Sloan.  Or, if you are willing to travel, there is House in CA where I went (I am from NY).  They give a free phone consult.

There is also a third option, wait and watch with periodic MRI to monitor.  Sometimes that is an option for a tumor your size.

Since you are from NJ, the NJ Acoustic Neuroma chapter is also an excellent resource.  They are easy to find on Google.  Let me know if you need any assistance.  Let us know if you need more.
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!