Sure either add me Brittany Benjamin from Green Bay, Wi picture of me and my daughter and fiancé I believe. Or give me your info.

oh my gosh!!!! you are the only person besides me that I have found with it in the thoracic spine!!!! I was just dx for the 2nd time, 2 years apart, and will be going to MDA Texas to have my T11&12 removed! This is the worse thing I've ever gone through and I'm scared to death of what complications i'll be facing after this next surgery, the side effects from the first time were awful enough and still affecting me. I am soooo sorry you are going through this too! can you add me on FB so its easier to talk?

Hello, I am 28 years old. I suffered from a hemagiopericytoma in my thoracic spine intra and extradural. I had two surgeries within a year 3 months after my first and only child was born. I face lots of deficits from the first surgery as it was misdiagnosed as a mengionma. My tumor was grade 2 and benign but I was told it would likely come back. I had my second surgery May of 2015 and go back in a few weeks for a MRI to see if anything is there, as the day after my surgery we had an MRI that showed they removed it all. They are suggesting radiation to the area the tumor was to help extend the time before it comes back. I suffer from autonomic dysrhythmia, brown-sequard syndrome, partial paralysis, pain, fatigue, and so much more. I don't know if anyone has something similar and still comes on here but I would love to chat as the struggle is hard and not knowing anything about my condition really is scary. I am from Green Bay, WI. I am now disabled, used to work as a manager and direct care giver for individuals who suffered from disabilities and had behavioral problems, worked with them to integrate into the community from institutions. I now am on the other side of things. I do not qualify for help as I would prefer to keep some independence and fight through the pain, as I have a daughter and am a stay at home mother. I am engaged, my world has changed since i was diagnosed and I would give anything to have someone to talk to who understands, maybe share some info, or just vent.

I'm not sure if you still come on here, but I also had a thoracic hemangiopericytoma. I had two surgeries within a year, it was removed but I suffer a lot of deficits and have had my world turned upside down. I am tougher than I ever thought I could be and have been searching since being diagnosed with this, for someone else with this or any info and it's been really scarce. I hope you are doing okay, let me know if you would like to chat or share info anything I'm here. I am 28 years old. I start radiation possibly in a few weeks if nothing grew back, to help prevent the tumor from coming back as long as possible. I am iffy about that as I suffer brown-sequard syndrome, autonomic dysrhytmia, partial paralysis, and so many other things. Take care.

Seriously not one person has joined this community? I have hemangiopericytoma in my thoracic spine, does anyone have ANY info on this?

Hello, I have recently had surgery (7/17/2014) to remove my hemangiopericytoma from my lower head (in the CPA and going into the jugular foramen). Now I am trying to decided what is the best method to get the little bit that was left (in the jugular foramen) and prevent re-occurrence. Any advice?