AN larger now than before gamma in 2013 :(

[skamper]

I haven't been on here in awhile but I'm starting to get concerned about the tumor that was left after from surgery in 2010.  I was told they left a 1.5 cm because it was close to facial nerve.  In Jan 2013 I had gammaknife to try and shrink that piece.  I had an MRI Tuesday and my follow up today.  I was told the piece is stable but when I asked how large it was, doc said 2.1 with AP dimension up to 0.9cm.  I asked to see my MRI before gamma and he actually agreed it has grown but doesn't seem concerned.  Told me to follow up in a year again!  I asked would they ever do gamma again, he said no.  Of course he can't answer anything about would I ever need surgery again.  Last time I saw my neuro, he seemed to act like I needed to talk to the other doc who did gamma.  I still have headaches, everyday, some worse than others.  Every now and then I have tingled in face on the AN side.  Does anyone think I should try and get a second opinion?  Is there someone I can send my MRI's to?  I live in Nebraska and loved the doctors that did my surgery but I feel like now I'm just being left behind, as if my symptoms are made up or not there.
Thanks for any help,
Susan

[cathyroe]

HI Susan,
I too had GK. and now 2 and a half years later it is bigger. Like you, my doc seems unconcerned. But I had GK with Dr. Lunsford at UPMC who is considered the best of the best... so I try to just have faith in his comments, but truly I know it is worrisome.

It seems like you are 3 years out from GK, and I know the tumors can swell and up to 3 years is not unusual... so I have been told by Dr. Lunsford. (since I am 2.5 years out and he just told me to come back in two years, even though it is bigger now!)

I don't know who did your GK, but I would for sure send to Dr. Lunsford since he is the leading authority. I know that he has done GK on people for a second time, so that is not unheard of. I think they also do surgery there for ANs, so he knows both sides of it. Still, I know of one person on this forum that did not have her tumor stabilize for four years.

If you send a letter and a copy of your last MRI and ask for a consult to see if he thinks you should do the GK again (and are considering him and UPMC) I'm sure he will respond. So yes, I would think a second opinion is a good thing, but it depends on who is giving the second opinion.

Here is the info to send a letter and copy of your MRI to Dr. Lunsford for a second opinion. You might as well ask the guy who is the world authority, right?

Dr. Lunsford
200 Lothrop St.
Suite F188
Pittsburgh, PA  15213
412-647-6781

I hope this helps!
Cathy

[KeepSmiling]

Have you explored Proton Therapy?