distressed

[marjoryb]

I have checked this site over and over and I've gone to many of the links mentioned by some of you.  One of the links indicates that if surgery is required after radiation (which doesn't seem to be uncommon) , severe facial nerve weakness (almost 100%) is likely and that surgery is more difficult because the facial nerve becomes fused to the tumor.  Another link indicates that hearing loss is as common after gamma knife treatment as it is after surgery... and that hearing loss may develop suddenly after gamma knife/cyberknife treatment even if hearing loss was not a symptom prior to treatment.   I have no symptoms now with a 2cm tumor except dizziness.  I'm distressed to learn that despite the treatment option I choose (surgery or radiation)), it will not - in fact - be treatment as hearing loss, facial paralysis or weakness and balance issues may still develop.

MarjoryB

[nipanddale]

Hi Marjory,

I know how overwhelmed you are right now. It's got to be like a semi truck just smacked you in the face with all of this. I know you are scared to lose your hearing especially since you haven't experienced hearing loss yet. I don't have an answer for you, but I understand your fear. I think everyone here has experienced this. What helps me at the lowest of moments is that quote that says "that which does not kill us, makes us stronger." My thoughts and prayers are with you, I know this is a tough time.

nip

[ppearl214]

Hi Marjory and welcome!

nip really does state it well. Overwhelming. Absolutely overwhelming. Please remember this.  This is a benign tumor. A benign tumor in a crappy spot. As with any medical situation, there are risks.. and benefits involved. Sounds like your quest for info is in motion and thrilled that you seek out all the info you can here on this site. So many experiences and range of situations shared here. Regardless of what your decision is... you know what is best for you, your lifestyle, your family, your health.  Just please remember to take a cleansing deep breath to help you keep a clear mind (to prevent that overwhelmed feeling) and know we are all here for you.

Please hang in there.
Phyl

[Battyp]

Marjory,
  I was told that what hearing I had when going into surgery should be maintained after surgery.  unf. I had lost all my hearing prior to surgery.  There have been some on the site who were able to maintain what hearing they had after surgery, and some that lost their hearing.  It all depends on tumor placement which can't be completely determined until they get in there. 

My surgeon told me they base successful AN surgery on the fact the patient lived through surgery and maintained facial preservation.  They are less concerned with the residual outcomes.  It's all so frustrating!  I wish you luck, patience and understanding while you try to make your decision.

Michelle

[russ]

Hello Marjory;
  My understanding of the 'fused facial nerve' problem is that's it's not that common. I have read excellent surgeons have little degree of difficulty operating on a previously irradiated tumor even with the scar tissue.
  I hope I'm recalling your post correctly as am not quoting.
  Have confidence and see well experienced people, Marjory!
  We pay for their expertice.
  Russ

[wind6]

Marjory,
 I can't add much more to what advise has been given here but I can offer my support. This is a major thing you are dealing with so be kind to you. Lean on those that offer comfort. Remember its okay to have your voice heard...even if what you need to say is angry words. With time and patients comes acceptance.
I am glad you found us. I think I speak for most of us when I say "use us for whatever you decide your needs are".
Many good thoughts sent your way and a great big wish for a little peace of mind while you research your options.                                Hugzzzzzz, Sherry