Author Topic: Another recently diagnosed and trying to determine which treatment  (Read 3510 times)

MCTMF

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Hello,

My name is Mike; I'm 41 years old with a wife and two young children. I've recently been diagnosed with an AN on my left side.
I have seen two doctors and sought an opinion from a third. The third was from a well known clinic, but I was a bit turned off by the opinion and the manner in whic it was presented.
I would like to know if anyone has had experience with the two Doctors I've listed below. Particularly, those that have undergone retro sigmoid with either of these doctors.  My tumor is just over 2.5 cm within the IAC and extends into the CP angle. Both have recommended RS for the clearest access, and say it will be a miracle if I retain any hearing on that side. (I now have very serviceable hearing on my AN side.) My biggest fear is long term or permanent headache.
Here are the Doctors & their suggestions.
Dr. Michael Seidman Henry Ford Hospital & Dr Jack Rock. -RS with likely to include some, possibly extensive intradural drilling of IAC for complete tumor removal.
Dr. Robert L. Daniels Spectrum Butterworth -Can't remember Neurosurgeons name, but he is AN focused. Two possibilities from him.
-Hearing is still good on AN side; investigate radiation to see if I'm a candidate, and determine if I'm comfortable with it.
-RS surgery to debulk majority of tumor followed by a smaller shot of radiation. - Theory being to minimize or eliminate intradural drilling and or any procedure that could potentially increase the likelihood of long term or permanent side effects. Headache, etc.
Both capable and highly credentialled men that have performed hundreds of AN surgeries, and continue to do so regularly.
Initially I was anti radiation, but have done some research and found some intriguing studies and stats. Most specifically from University of Pittsburg. Now I'm a bit torn.

Praying God will make it abundently clear which way to go, but your knowledge would be helpful as well.

TJ

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  • 1.2 cm AN right side, CK November 2010
Re: Another recently diagnosed and trying to determine which treatment
« Reply #1 on: August 06, 2012, 06:11:59 pm »
Mike

Welcome to the unwanted world of AN's.  There is so much information for each of us to digest.  Like most of us you probably just want to get this dealt with.  But please take you time and make sure that you are comfortable with your decision.

As I understand you still qualify for radiation as the AN is still within the size limits that produce excellent outcomes.

Best of luck

TJ

millie

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Re: Another recently diagnosed and trying to determine which treatment
« Reply #2 on: August 09, 2012, 08:10:07 pm »
Mike-Like you, I am newly diagnosed (Feb) and it is growing(July)  It is still considered small at 1.4cm x.6cm but my hearing had really worsened tremendously last five months.  I am looking at treatment early October in NYC area.  Because of big hearing loss, headfullness, off-balance feelings I am considering translab. I am also worried and sometimes fearful of where I am heading.
However, you have found this forum and that is a great support.  Get the willing to talk list if you need it; find the local support group leaders/members.  As everyone says, research the best you can and eventually, the answer must present itself.
Hanging in with you.
Millie

It is what it is

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Re: Another recently diagnosed and trying to determine which treatment
« Reply #3 on: October 16, 2012, 05:26:16 pm »
I also wish you well in your research and decision making.  Sending out your MRI and information to several medical centers specializing in AN's may provide more information if you haven't already done that.  I was surprised they were willing to do consultations for free. 

karen
.7cm, left side AN , Tinnitus, Hearing preserved, Middle Fossa 8/1/12 at HEI, Drs Friedman and Schwartz, Sharing your story is extremely helpful to me.