Author Topic: 2nd time around  (Read 2779 times)

slp1

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2nd time around
« on: August 01, 2005, 01:34:37 am »
hi everyone, i'm kinda new here.  i'm a 26 y/o female with a possible 2nd AN.  10 years ago i was diagnosed with a right AN. at the time the dr.s said it wasn't such a big deal. Of course back then, my 3cm tumor was apparently considered small.  Due to insurance concerns, my father and i decided to go with getting it removed asap.  it was a long surgery and the damage it left me with is irreversable.  i lost both balance nerves on that side, the hearing nerve and my facial nerve.  my life hasn't been the same since.  now, all this time later it appears that i may have an AN on the left side.  dizzy spells and imbalance are back as are occasional severe headaches.  my hearing on that side has become worse.  i don't know what to do.  i'm scared, though i know that's and understandable common theme.  my life has been an uphill battle all the way, and now it looks like things got worse.  to top that off, if this is indeed the case, then it will finalize my diagnosis of NF2 (neurofibromitosis type 2).  I was wondering if there was anyone else out there that may suffer from something similar, or has gone through a double AN.  i'd appreciate any advice.  thanks,
shannon

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Re: 2nd time around
« Reply #1 on: August 01, 2005, 04:53:38 am »
Shannon,

You are in my thoughts and prayers.  Yes, there are others with NF2 that can share great light and support with you on this subject.  I can understand how you feel, thinking that this was all behind you and have to relive this whose situation again.  I have read that it is common for people to still have some symptums even after removal of their AN's.  I am a radiation patient who is dealing with some new issues with my AN ear.  This can be an overwheling condition, and there are many who take antidepressants because of it.  Have you been to physical therepy yet? 

Know that you are not alone!  We are here for you Shannon, to provide support, comfort you, and share our thoughts and prayers.  Here's a cyber hug   {   }

Gary
Originally 1.8cm (left ear)...Swelled to 2.1 cm...and holding after GK treatment (Nov 2003)
Gamma Knife University of Virginia  http://www.medicine.virginia.edu/clinical/departments/neurosurgery/gammaknife/home-page
Note: Riverside Hospital in Newport News Virginia now has GK!!

marie

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Re: 2nd time around
« Reply #2 on: August 01, 2005, 01:22:43 pm »
 Shannon

Dr. Brackmann at House Ear Clinic  removed some of the auditory canal so that my second  tumor has room to grow without killing my hearing.  The surgery was done in May, 2002 and so far is working.  Since you are alredy experiencing those symptoms, you may not be a candidate for this procedure, but it's worth checking it out.
Marie
surgeries : back of head 1967,1987
               translab 1991
               bone reduction 2002
               7/12  1968
               temporalis transplant  1969

russ

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Re: 2nd time around
« Reply #3 on: August 01, 2005, 04:24:07 pm »
Hi Shannon
  I've NF-2 and have lost one side surgically, the other side is watch/wait and a 50% hearing loss. First surgery was at 27. Now I'm 55.
  Also noted are two small meningiomas and 10 small spinal tumors and 100% bilateral vestibular loss.
  I've no facial paralysis to deal with however, as of yet.
  Depending on your MRI, if the AN is still in the IAC, you may be a candidate for a "Middle Fossa Tumor Decompression". ( see Marie's post ) They do cut away part of the bony IAC to allow the auditory, vestibular, and facial nerves decompression.
  Maybe consider joining the NF 2 Crew.
  I'm sorry to read this... Please don't get pregnant.
  Please feel free to email me directly if you have any more questions or comments russvk@netscape.com
  Russ