Hello Again

[Roalb]

Well, after 16 years of stability, my 12/27/16 MRI has shown considerable regrowth. I had FSR with the late doctor Jeffrey Williams of Johns Hopkins in June of 2000. Prior to this last MRI, I had some numbness in my tongue and cheek which has gotten worse. I really would appreciate hearing from those of you required surgery after radiation failed. Would like to hear about the doctors you used and how you're doing now. I have no hearing on the AN side so it will be translab for me.  I'm in the process of seeing the doctors now. I've been to Emory, and will be going to Vanderbilt and the Mayo clinic next. Emory is closer to home and would be easier for post surgical followups. I would like to thank all of you who post here. Its nice knowing you're not alone.

[Janey]

Hello,
Sorry to hear of this re-growth.  As you start another leg of your AN journey, we here on the forum will be here for support, good wishes and prayers.  I had GK in April 2016.  Keep us informed of your plan for treatment. Good luck to you!

[ANSydney]

Roalb, welcome to the forum and sad to hear about your regrowth.

What size did the previous MRIs say and this one? It would be interesting to get some numbers.

[Roalb]

Sorry for the delay guys. Seeing doctors again about surgery. When my an was first found and I decided on FSR at Johns Hopkins June of 2000 it measured 1.2x.5x.5 cm. First scan after radiation showed the measurements to be 2.1x1.1x1 cm. After 16 years of followup MRI's the scan in 2014 showed the measurements to be1.9x1.1x1.1cm. Unfortunately the last scan this past December showed growth to 3cm(transverse) x 2cm (AP) x 2cm(CC).  Could any one tell me where to post to talk to those who have had radiation first and followup surgery? Have my 2nd appt. at Emory next week, and then an appt at Vanderbilt. The vertigo and facial numbness get worse each day, but I'm hanging in there. Best wishes to all of you dealing with this.

[ANSydney]

It sounds like radiotherapy has only managed to make your tumor bigger!

The 3 cm transverse dimension sounds like it includes the intrameatal portion, which most don't include (important if your are looking at the literature). If so, then your tumor may be describes as a 2 cm (or so) tumor. Take a look at the MRIs and make your own assessment of size.

I think symptoms are a better indicator of action than size if the extrameatal size is less than 2.5 ~ 3.0 cm (since up until then all three options (microsurgery, radiosurgery and observation) are available to you).

Have you considered a gamma knife treatment?