AG2886

Hi all First time poster here, just got diagnosed with CVG today (34 years old). I noticed a small ridge to the right of my crown 2 years ago but I never had any pain or pressure in that area. No progression until 2 months ago when I noticed another ridge next to it, as well as a small amount of pressure beginning to build on my scalp. I visited a dermatologist 2 months ago (Dec 2020) who said "oh I think you have a super rare skin condition called CVG." She sent me off for an MRI and the results came back today. My MRI report says I have "uncomplicated diffuse CVG" - in that the thickening is all over my scalp, but the ridges next to my crown are the only bits where it is currently noticeable. I am otherwise very fit and healthy, Caucasian, and I have a full head of hair (no baldness whatsoever). I think my CVG is progressing quite quickly (I'm feeling pressure in the area and am noticing new ridges). I live in Canada. Does anyone have any recommendations on where I should start? My dermatologist has no suggestions. It's getting me down pretty badly! Thanks, AG