Dr appt

[Cheryl R]

I had my dr appt yesterday at the Univ of Iowa.      I am having some hearing changes in my good ear.   The audiogram did show some mid level changes which of course we all know includes speech discrimination but not as much as I had thought it would.         I will have to get a MRI to see how much the tumor in the good ear has grown.  Last May it was 6 mm.      He will not do a cochlear implant or ABI until the hearing is pretty well shot.                 This really was just a follow up appt from my facial neuroma surgery 10 mos ago.    He is pleased how the nerve graft is working as I do look pretty good at rest now.   He said I may never really get the smile all the way back or being able to raise the eyebrow.        I can shut my eye all the way also.    I do have a liittle synkinesis which he thinks inevitable.       We again mentioned radiation but he is against it for NF2 as thinks it destroys the cochlear nucleus so any implant won't work. 
                    So life goes on day by day!                               Cheryl R

[Dealy]

Looks like your getting to the point I was Cheryl. The only confusion I have is the statement about radiation. Nita got a Cochlear Implant and had radiation on the ear that started out as dead anyway-I believe she said it was 2.7 when she lost her hearing in that ear. Why would radiation not destroy her Cochlea also? Confused> Wish you lbest wishes. If you read my other post under NF2 thread. What are symptoms of facial neuroma. I have no balance nerve on that operated side or hearing nerve because they were removed at surgery-so all I have left is the facial nerve. Thanks-Ron

[Jeff]

Hello,
I can add that my brother had radiation on both sides. He subsequently need to have the tumors removed because they kept growing. He received an ABI when the second tumor was removed and it is working very well for him. He says that it has improved his life greatly.
Jeff

[Cheryl R]

 It sounds like Nita might have been one of the first to have got a CI past having radiation and they were not sure if it would work or not.    It is such a hard decision if one wants to believe your own doctor or take the chance of trying something else.   
  It sounds like my facial neuroma grew very fast.     We could not say there was anything growing for sure on the 2005 MRI and it was quite big and bright on the 2006 one.    Possibly even 2 cm.   I also for about a month was having increased facial paralysis symptoms.      I had some residual left over from my 2001 surgery but there was a definite change.      However my surgeon said he thought it was on the facial nerve but you can't really 100% tell until you get in there.    It was a whole new tumor and not a regrowth.             I knew ahead that he possibly would be doing the nerve graft.
Took me a while to get back here as I had no computer for 2 days after the telephone co did some work in the area and goofed something up.   Also  then had to work the weekend 12 hr shifts.
                         Cheryl R

[Obita]

Hi Cheryl:

Do you get another MRI before May? 

Kathy

[Cheryl R]

Tomorrow is MRI day as I get them up here where I work and it will be sent to Iowa City. Ususally I have them scheduled prior to my doctor visit but this was just a follow up from the surgery last spring so he never knew about the hearing changes till I saw him.
     I will be glad when tomorow is over as I hate the MRI's more and more!                Cheryl R