GK/Middle Fossa NF-2

[russ]

 Hi
  I don't know where to put the emotions and words. It's late.
  When I was at home today I realized even more how rapidly my hearing is disappearing. I even had trouble understanding my Brothers low pitched, rather loud voice and had to ask him to repeat several times.
  I've been thinking intently of what to do as last year at Mayo, I was asked by the Neuro when I'm going to have the AN out or treated as my hearing is getting so bad and I'm quite young to be walking around for years with a brain tumor.
  He said GK was an option now. Seems he gave nearly = stat outcomes for either Tx type last December. NF-2 ANs have shown only in some cases to be more radiation resistant than single, spontaneous AN ( to my understanding ).
  *I'm really unsure of facial nerve outcomes of GK vs. Middle Fossa Surgery. I had thought them about =. I've forgotten many things and facility reports seem to lean in favor of their particular treatment. The Neuro at Mayo Clinic does surgery and is a licensed GK provider also. I do feel the drooling tendency is not a good sign.
  I do not trust HEI to give a good GK prognosis. Nor do I trust UPMC Radioncology or JHH Radioncology to give a fair surgical prognosis.
  Just don't wish to have another brain op.
  Ideas?
  Thanks, anyone.
  Russ

[ppearl214]

Russ,

As you know, many here can relate to the emotions you are feeling, including myself who has noticed significant hearing loss in my AN ear post-treatment (hoping it is only temporary to due tumor swelling, which has been confirmed via MRI).  I know there have been many postsabout CK/GK and you have also contributed but I have to ask... have you also checked into CK? Is it available in your area?  I can understand the emotions of not wanting to have another surgery (have been there but for other reasons than AN).  There is nothing I can say that you don't already know, but know that you are in my thoughts.

Hang in there!
Phyl

[shoegirl]

Hi Russ,

Have you thought about getting an opinion from Barrows?  They do CK/GK and neurosurgery.  I never felt pushed into a certain treatment - I was given every option.  If you are interested Dr. Daspit is one of Neuro-ENTs there - he would be a great person to meet.  Part of their protocol is that you meet with the Neuro-ENT, Neurosurgeon, and Radiaton Oncologist.  They all give you their opinions - individually. Just a thought.  I know there are great facilities all over the country. Sorry, you are going through all of this - Best Wishes!

[russ]

Hi
 
  Thanks for commenting.
  Guess I'm not a traveller, ShoeGirl, and have been Dr'ing with two of the best AN and NF-2 clinics in the USA, University of Iowa Hospitals and Clinics, and Mayo Clinic, Rochester wwith MRIs reviewed at HEI and JHH.

  Phl; My feeling is the accuracy %s and Tx success of CK is very comparable to GK and both are tissue sparing in their respective ways. Of course we've had longer to have compile statistics on GK.

  I guess I feel pretty good about a GK decision but am afraid. I'm afraid of surgery also.
  This is a bit psychological, but somehow I guess I'm looking for someone to 'validate my feelings'; As if to give the "OK; I think that's a good choice." Sounds weird, I suppose.

  I do so thank you and the one fellow who emailed me. To take the time to pay attention to, think, and type a response is very kind. Thank you!!

  I guess ultimately, one has to make their decision and not look sideways or backward. This is hard!!

  Russ