AN dilemma...help!

[panos]

Hello,
I am writing on behalf of my fiancé who has had a very difficult experience and she is still in trouble. She had an operation 4,5 years ago for a nearly 3 cm AN in her left ear that was sub-totally removed in Munich hospital Germany. One year later the remnant had grown to 2,5 cm and she had GK. The AN showed necrosis in the beginning and then a year later started growing again so she had to have another operation four months ago, in Tubingen in Germany by Dr Tatagiba, who removed more than 95% of the tumor in a very difficult operation. Now four month after the operation the tumor grew by at least 8 mm and  Dr Tatagiba  recommends to have fractionated radiation, although he doubts that this will work at the end. He thinks that at the end she will have to sacrifice her facial nerve so that the tumor will be exterminated. We don't know what to do!! Has anybody any idea of how to deal with this situation?

[nftwoed]

Hello;
   My guess is surgically and with plenty of time for rehabilitation. The facial nerve will need addressing as the occassion arises. The AN sounds aggressive enough to possibly be an NF-2 AN. How old is your fiance?
   My question to Dr. is "why would you recommend something you think will not work?"
   Maybe ask about Avastin.
   Best wishes in this, both of you. It sounds like you're in for a long haul!


 tumor.

Hello,
I am writing on behalf of my fiancé who has had a very difficult experience and she is still in trouble. She had an operation 4,5 years ago for a nearly 3 cm AN in her left ear that was sub-totally removed in Munich hospital Germany. One year later the remnant had grown to 2,5 cm and she had GK. The AN showed necrosis in the beginning and then a year later started growing again so she had to have another operation four months ago, in Tubingen in Germany by Dr Tatagiba, who removed more than 95% of the tumor in a very difficult operation. Now four month after the operation the tumor grew by at least 8 mm and  Dr Tatagiba  recommends to have fractionated radiation, although he doubts that this will work at the end. He thinks that at the end she will have to sacrifice her facial nerve so that the tumor will be exterminated. We don't know what to do!! Has anybody any idea of how to deal with this situation?

[Kathleen_Mc]

sounds like there has been attempt to spare the facial nerve with previous surgical interventions? It may be that this is not possible without continued treatment of some type for what may be something that just keeps growing. I have a friend that refuses to have her facial nerve compromised and she just goes into the OR every so many years to have the tumor reduced. I personally lost my facial nerve, along with others, in my very first surgery, I was told that the tumor was completely removed only to find it regrew and I still needed more surgery (fingers crossed it actually gone this time). When the tumor regrew I was offered gamma knife but chose the have surgery again in hopes it has been fully removed this time (didn't want to take the chance gamma wasn't effective and psychologically have the tumor growing in my head was very upsetting for me as I had almost died from the original one)
Everyone has to make the choice that is best for them.
Take care, Kathleen

[It is what it is]

My thoughts are with both of you! She has sure been though a lot already!  I'm also interested in hearing from those who had to have some of the tumor left on their facial nerve and what they did if regrowth happened.  I don't have any wisdom to offer but I can offer my caring.  Karen