Tumor in the cavernous sinus

[Mlamb]

Hi everyone. I was just wondering if anyone's tumor extended into the cavernous sinus - I'm not sure if that is even possible with an AN - I have a trigeminal schwannoma that is mostly located in the cavernous sinus and Meckel's cave and with a smaller portion lying on the brainstem. My tumor is large about 3.4 cm and it is now pressing in the brainstem causing some distortion and edema. I had surgery 3 years ago but my surgeon only removed the portion on the brainstem which is already back and larger than before.  I had gamma knife radiation in April 2016 but that too has failed. I am facing another surgery as my tumor is still actively growing and I need a surgeon that is highly skilled operating within the cavernous sinus. I am currently seeing Dr. Sen at NYU and have appointments with Dr. Fukishima at Duke and Dr. Gardner at UPMC. Can anyone recommend anyone else I should see?  I've sent my scans to Dr. Schwartz and am waiting to hear from him as well but having surgery in CA worries me bc what happens when I get back to Jersey and start having issues?  Anyone else in NY? Thank you all for your help and wishing you all Happy Holidays!

[JLR]

Good Morning, Dr. Pannullo is an excellent doctor at Weill Cornell. She is a neurologist radiologist and Dr Philip Stieg is the surgeon.  Dr. Stieg did my surgery and Dr Pannullo follows as a residual tumor was left because it was on the facial nerve. I might need SRS in future.  Anyway both are practicing at NY Pres. The best hospital in country.  Google both doctors. They are the best. I hope your feeling better. Regards, JLR

[Mlamb]

Thank you for responding.  I know Dr. Panullo. I had consulted with her before I had  Gamma Knife. She had recommended fractionated radiotherapy for the large residual Dr. Sisti left behind. I ended up choosing Dr. Kondziolka. I'm not familiar with Dr. Stieg. I will research him. Quick question, was your tumor located in the cavernous sinus?  The problem I run into is that even surgeons with a lot of AN experience aren't necessarily skilled in operating within the cavernous sinus. That was the issue that I believe I ran into with Dr. Sisti. He's had great outcomes for many of his AN patients but in my case not so much.  Thank you again for your advice and I will look Up Dr. Steig. 

[Citiview]

Inspire.com has a brain tumor discussion and support group sponsored by American Brain Tumor Association
Maybe you could make an inquiry on that forum and get a response from a bigger group.
Wishing you the best.

[JLR]

Hello, My tumor was not the same as yours. There's another surgeon Dr. Alain DeLotbinere he's in White Plains 914 996-6759. He's got a great reputation and very knowledgable. He was one of my 2nd opinions when I had surgery. I had a small AN.. I chose CK which at the time 2010 was best solution but it was not the right decision. The AN grew as 1 cell did not respond to the radiation. It grew and pressed on the Trigeminal nerve. Anyone I decided on surgery but that was after many 2nd opinions. Good luck to you. Happy Holiday. JLR