Newbie to the site, oldie to AN

[nickel]

Hi all-

I am a newbie to the site and so glad I found you all!!!!  I have NF 1 & 2 therefore I have bilateral AN, Translab surgery in February '93 on left side, Gamma Knife on both left/right summer/fall '93.  GM worked it's part on both left/right, MRI's showed no growth, left actual started to resection itself.  Hearing couldn't be preserved and total Deafness by Jan '94 after that no symptoms and good quality of life for 13 years!!!  Shoot forward to present day, Feb '05 left eye started with what seemed to be infection, severe dry eye, lagophthalmos.  Neurosurgeon (which I have been under care of for the last 14 years, and MRI's annual) couldn't see any significant regrowth and ruled possible scar tissue interference, refered to Neuro-Opthomaligist had Gold Weight implant Dec '06.  In the meantime left side of face started to become less and less "active" and as of today have partial facial paralysis.  I am beside myself, my smile has always been a part of me and have always been told I have a great outlook and cheery disposition on life however lately that has gotten really hard to maintain.  My Neuro-Doc is retiring so I feel like I am losing a person in the family and have to go see another on the 1st of June who will probably rule for surgery again.  My hearing loss was something I accepted as part of who I am and will be but losing my smile has been the hardest thing and just hope that it is fixable.  Anyone have total facial paralysis on one or both sides, have surgery and part or all nerve activity return??  I hope I can look forward to something???

Nickel

[nickel]

Oh I didn't state that my most recent MRI does show regrowth Re: the new referral to another doc.  The waiting is the toughest but guess that is all you can do

Nickel

[HeadCase2]

Nickel,
  Sorry to hear about your new symptoms and regrowth.  But I'm gald you've joined us here on the ANA forum.  There are people here with many different experiences, many with regrowths.
 You mentioned that you're sad to see your neuroologist retire.  Take it as an opportunity to seek out the best doctors modern medicine has to offer.  You didn't mention what part of the country you live in.  It may be worth seeking out the doctors at a tertiary teaching hospital.  The neurologists, neurosurgeons, ENT surgeons, radiologists, etc., there are the most likely to have extensive experience with your condition.
 
Regards,
 Rob

[nickel]

Rob-

Thanks for the welcome.  True yes, I do need to look at this as a greater opportunity to get new/better care in the ever growing world of medicine.  I live in the Kansas City, KS area and will look more into my options once I hear what the new doc has to say/offer:-)

Thanks!
Nickel

[ppearl214]

Nickel,

Hi and welcome. How big is the regrowth right now and do any of the dr's feel you can withstand any more radiation (thinking cyberknife)?  I am so so sorry to hear of your ordeal the past years and what is going on now, but we're going to try to bring a smile back to you as best as we can.  We're kinda warped that way around here!

Sending you hugs and know we're here for ya!
Phyllis

[nickel]

Phyllis,

Thanks for the boost of confidence!!!  Really a blessing I found the website and all of you "like" me. I know I am not alone   As for the regrowth we go to the new neurosurgeon on the 1st of June after that I will have more details to share.

Thanks again!
Nickel