Great to hear things are turning out OK for you CVGB.
It sounds like we are in similiar sorts of positions. I have a relatively minor case as well going by some of the pics I've seen on google, and I have reasonable hair coverage at the moment. I agree with Spanker (thanks for the reply) that CVG and hair loss are unrelated, but as my future now seems to include having hair to obscure either CVG or a large scar I'm looking into ways to keep my hair.
I'm torn regarding the surgery. You're right that it's very expensive, especially with transplants included, so I want make the right choice. Having someone slice and dice my head doesn't appeal much, but the gold standard to me would be to get the corrective scalp reduction done at the same time as an FUT transplant, then come back and have FUE transplants done to cover the scars. The first people I spoke to don't want to use the CVG excision as the donor area as they can't guarantee those follicles will survive. The area at the back of the head isn't subject to Male pattern baldness so that's where they get donor hair from as it stays in permanently. Getting the scalp reduction done right at the start means long term I give the scar maximum time to dissipate. Plus I would prefer to hide a scar than a lumpy scalp.
The downside to this is the extra cost, and the unknowns about CVG - what if it comes back? What if I'm only at the halfway mark of it's development now, then I'd have to get the whole process repeated down the line some time, or end up with CVG AND a big scar. So many unknowns with this blasted condition. Also, I don't know if it would be possible to hide the scalp reduction surgery before the FUT/FUE transplants kick in properly, which would be awkward at work and so forth. Just kind of embarrassing I guess.
Failing that I think I'll definately go in for an FUT transplant anyway, I was happy to go bald previously but If I am to have hair then I don't want a thinning crown, and If I get it done now friends and colleagues won't notice.
It's shit to be blessed with this rare condition, but comforting to know others are wrestling with same dilemmas. Do you reckon you could post up or PM me some of those post CVG corecction pics you mentioned?