ANA Discussion Forum
Pre-Treatment Options => Pre-Treatment Options => Topic started by: Mlamb on December 18, 2017, 07:41:33 am
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!
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
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.
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.
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