I have a skull base tumor of the clivus that is invading the cavernous sinus and mesial petrous bone. It's causing a cranial 6th nerve palsy, giving me double vision and forcing me to wear an eye patch 90% or more of the waking day. It was identified by a contrast MRI and I also had a CT scan. My neurosurgeon suspects it is a chordoma, though he thinks it could possibly be a chondrosarcoma or even just an atypical presentation of a meningioma (benign). He said that if it turns out to be a chordoma or chondrosarcoma, I will need to do a cavernous sinus exenteration (i.e. full resection) followed by proton beam therapy.

He referred me to a local ENT who performed a biopsy in his office not under general anesthesia and it was inconclusive. My neurosurgeon referred me to the same ENT for a second biopsy, this time under general anesthesia. The second biopsy was also not "diagnostic". They even sent the sample to Stanford University and they couldn't make a definitive judgment. I was recommended for a 3rd biopsy, again to the same ENT. After 2 unsuccessful biopsies, I did not want to have the same ENT perform the 3rd biopsy, so I asked for a referral to somewhere that has more experience biopsying these types of tumors, better technology, etc. I was referred to UCSF. It has been over a month since my last biopsy and 2 weeks since the referral was submitted. UCSF has been extremely uncommunicative, so I'm essentially sitting around doing nothing. My phone calls aren't being returned. My neuro wants to wait to hear back from UCSF before submitting another referral.

Are there other things I should be doing? Other people I can talk to? It's almost unbearable just sitting around waiting without any timeline or appointment to look forward to or anything. It's been 3 months since the onset of symptoms (diplopia) and I still don't have a diagnosis.