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Newly DX'd and lots of questions

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Ric:
Hi Everyone,

I'm newly diagnosed with a 5 mm AN from Stanford.  My Doctor is suppose to be one of the best.  I am having to decide between middle fossa surgery or radiation.  Neither of them appeal to me. :-\  Apparently I have a 50% chance of loosing hearing with either approach, although with radiation i'm told hear loss is over a 5 year period.  30%chance of facial paralysis, which i'm told would move than likely be temporary.  I am scared to death of surgery, but i'm told that if radiation does not shrink the tumor than my chances of surgical removal without damaging all three nerves (facial, balance and hear) is nill because the radiation damages those nerves?   
I am also very concerned about headaches and wonder what peoples experience is with the middle fossa approach?    And I would like to hear from people about CSF leakage, and how that is repaired if need be, b/c my doc did not go into it.  He is good and nice but always pressed for time, and every time I need to see him means a waittime and a long drive to and from, and I'm feeling like I need to get info from other sources.  I'm looking into 2 and third opionions but would like to hear from folks who have been through this ;). 
Sincerely
Can't decide (Ric)

Yvette:
Hi Ric, I am 3 mos post surgery. 3cm (1 inch) AN removed translab style. I didn't have your options because of the size of the tumor. My Doctors were Link and Driscol from the Mayo Clinic in MN. As a result of surgery I now am deaf on one side ,but they were able to see very well with my type of surgery and thus protect the facial nerves. I had no complications to speak of, a few temporary things that got better over the weeks and now am doing great. For myself, I wanted that thing OUT of my head. I didn't want to watch it or wait on it, or chance having to go back in after in at a later date. I feel good. Your tumor is little so you have more choices. Even with my big ol' tumor-no csf leaks. Be sure you're surgeon has done at a minimum 500 surgeries; you don't want anyone who is still practicing. My 3 month MRI shows every last bit of it is gone, and I sleep very well as a result (especially with my good ear down on the pillow!) Best wishes, Yvette

mema:
Ric,

     My AN was 8mm .  I live in Florida and traveled to JHH in Baltimore, MD Anderson in Orlando, and Thomas Jefferson in Philadelphia, plus numerous phone calls to other states.  While sitting in the office of Thomas Jefferson, a patient post-op surgery 10 yrs was back because it had grown.  Another patient had a towel held to his head, I guess leakage of some sort.  I basically made up my mind at that moment to go for radiation.  I too was told I would loose hearing over a few year period.  I lost 90% hearing six months after FSR treatment. Drs. were surprised.  I do suffer headaches and other symptoms too.  I did not have any facial paralysis.  I guess I don't know which is the greater of the two evils.  Maybe watch and wait would be a better option right now.  You're lucky to have found this forum, I hadn't until just recently.  It's a God send to me.  Good luck , I know it's a hard choice.




                                                                  mema

mema:
Ric,

       I hope I didn't sound like doom and gloom, because I'm sure for everyone of us who questions either choice There must be alot of success cases out there of surgery and radiation that people don't post because they are perfectly fine or symptom free.




                                                                                                 mema

ppearl214:
hi Ric and welcome. Good to see you here and hoping the forum discussions are helping you out.

Stanford... fantastic place for AN treatments, regardless if surgery or radiation.  I had Cyberknife radiosurgery at Beth Israel in Boston 13 months ago.  My AN was just 1cm at the time of treatment (at the age of *coff* 45!).   I have 100% hearing retention for what it was at the time of treatment (hearing loss was minimal at time of treatment -- just below "normal" range and voice recognition at 96%).  As with any AN treatment, I have also run into small bouts of vertigo and balance issues, but, in my case, life has certainly moved forward. Since treatment, I've married, I've traveled to the UK, I've moved my apt, I work over 40 hrs a week and doing fine.  So, that is the long/short of my AN journey thus far.

The are many threads in the 'Pre-Treatment' forum as well as in the "Archives" that discuss many of us that were in the decision-making process (incl. a thread I started early last year) and you will read many that go through the decision making process and how we came to our decisions. The great news is... your AN is small, it's benign (but just in a crappy spot), you have time to sit back and ponder and investigate and ask questions and to do your homework.  The info available here may be a bit overwhelming at times, so, just take a deep breath, sit back with your favorite beverage and know that we are all here to support you during this time.

mema is also correct that many are doing fine and may not be posting.... but, know that many of us that are "posties" (post-treatment) remain here, dedicated to helping others that come here to seek answers, comfort and support.  Many of us are also available on private message (PM emails) as well as phone (pls see thread re: WTT List).

Hang in there... and know we are here for you.
Again, welcome,
Phyl

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