Dealing with the Unknown

Amanda had a follow-up at UCSF with the medical team that is following the condition on her scalp (Cutis Verticis Gyrata). The appointment went pretty well for the most part. A new doctor joined the team so we went backwards and discussed all the tests over the last few years to bring her up to date. I did find it interesting that the new doctor comes from a background in alternative medicine. I was glad to see the combination of medical styles.

In the course of their discussion, it was suggested that it was time for a follow-up with her Neurologist. The growth and swelling were actually down from previous visits, but since she had two odd episodes in November and early January that included dizziness, headaches, and hair loss, the team felt it should be re-discussed/reviewed.

The team has a tendency to talk/theorize amongst themselves while standing in the room with us. The lead doctor explained to the new team member that it might also be helpful to go back and check to see if anything new has been published on the condition since they last looked, that “this is just so rare, we just don’t know.” Oddly enough, I found the fact that they were honest and comfortable enough to admit that they do not know what to expect refreshing after seeing so many doctors that tried to brush it off mainly because they had no idea where to start.

We realized early on that we were dealing with the unknown. With only six documented cases available for their comparison a few years ago, we just have to trust in the fact that these doctors are rated among the best in the world and will do all that they can. It is hard sometimes not knowing what to expect, what the possible outcomes may be etc.