The Tuesday after being diagnosed in the ER over the weekend, we were able to get in to see a local neurosurgeon as suggested. We were feeling pretty nervous after our research on chordoma but had a little bit of hope that we’d get some good news to keep us moving forward.
Matt arrived at the appointment with his fiancee and brother loaded with questions for the surgeon. The first thing the surgeon did was pull up the MRI and point the blob out. The next thing he did was point out the basilar artery. Following that, he pointed out the carotid. Then threw his arms up, opened his eyes up really wide, and basically blurted: This thing is all over the place, it’s going to be very risky to take it out. He said (and I have some of this recorded) Matt had about 5 years before it would come back if he even made it through the surgery. Over and over, he said the basilar artery was creating a huge risk for the removal and even touching it could result in death. He seemed to know the tumor it was intradural and suggested it might then be adhered to the basilar artery. There was no relief with this guy!
At this point, Matt had his head on the table in complete hopelessness. Trying to steer this surgeon away from his fixation with discussing the artery, I asked if he had any good news for us. He then told us some story about a man who had his basilary artery completely severed and is still alive… I’m still not sure if that was a joke or not but I’m sure it was not what we were looking for…
The surgeon said he couldn’t do the surgery (not that we’d ask him) and told us it would be “crazy” to try to remove the entire tumor with endoscopic surgery.
He rushed through a neurological exam and sent us on our way with a referral to see a neurosurgeon in Detroit who specialised in skull base surgery. A friend also made an appointment for us with another skull-base surgeon in the Detroit so we could get more opinions and we were already in touch with the University of Michigan to check if their center would see Matt while we were in the area. There was nothing left to do but try to move forward. Matt was a wreck.
This first appointment was the worst part of the entire experience. Probably worse than surgery Matt thinks.
Our Take-Away: Advice on treatment and prognosis is much better given by experienced skull base neurosurgeons who have treated many chordomas. Seek many, many, many opinions especially if you have to experience anything like our first appointment. Most surgeons aren’t comfortable operating on these tumors because of the location and need for complete resection so hopefully they will send you in the right direction to another surgeon without causing unnecessary panic.
Thankfully, our next appointments and consults went much better!