How can I learn about CVR?

[Monkey'sMommy]

I have heard that CVR is a possibility for my 14 month old with metopic/trigon, but I haven't been able to find out much about exactly what a CVR is. I have searched here and also done a google search, but can't find much.

Does anyone here know of any good websites or previous ck threads that can explain to me how a CVR is performed? Or other procedures that might be a possibility for Monkey.

His appointment with the new team (second opinion) is on Wednesday Sept 8 and I want to be prepared. Thanks!

[BrendansMummy]

Let me find it for you :)

[Janet]

Look at this thread;

http://www.craniokids.org/support/showthread.php?t=6426

[BrendansMummy]

Look at this thread;

http://www.craniokids.org/support/showthread.php?t=6426

There it is is!! I just spent 20 mins looking for that lol

I have now bookmarked it

[Monkey'sMommy]

Oooh, that is exactly what I was looking for! Thank you thank you thank you!!! I learn much better by seeing drawings or video, not just reading words on a page, so that is perfect!

Now I am wondering about a type of CVR (I think) I heard about where a piece of the skull from the top or back of the head is cut and switched out with the forehead bone. Does that make sense?

And last question, from the drawings in that thread, it looks like there ends up being some gaps after everything is put together. Are those filled in somehow, or does the skull grow into those gaps with time?

[BrendansMummy]

I know the 2nd procedure that you are talking about but i dont know very much about it sorry. Yes there are some gaps left and in most cases all thet free area is filled in by the bone when it grows

[Janet]

Fiona's skull was put back together with plates and screws that disolved over time. Yes, there was many soft spots, they closed up over time....she does have a couple left (which is not normal). Here is something from the sick kids website about the surgery:

In the moderate to severe cases surgical correction with a Cranio Orbital Reconstruction (approximately 6 hours in length) is indicated. This surgery involves the reconstruction of the frontal bones (forehead) and of the upper orbits (supra orbital rims) into a more aesthetically and functionally correct position.
Via a coronal incision, the skull bones are cut and separated from the brain and reshaped. The synostosed portion of bone is removed and the forehead and the upper bone portions of the eye sockets (supra orbital rim) are reconstructed and moved forward. Bone pieces are held in place with plates and screws (usually bio-resorbable ones). Usually there is not enough bone to reconstruct the entire surgical area and several ‘soft spots’ remain which will heal spontaneously over time

[Monkey'sMommy]

That is good to know, and fascinating. Thank you.

For a moment while reading that I let my mind wander and picture Monkey undergoing that procedure. I almost vomited.

I am totally putting the cart before the horse, I know. We still have his Clinic appointment this Wednesday, and who knows if they will even recommend surgery. But I know if they do, I will be much better off in the long run if I am informed and prepared. It's just so hard to think about this happening to my baby boy. Sigh.

Thanks again for all of the info! I truly appreciate it!

[Janet]

I did throw up many times before the surgery (I have a weak stomach and bad nerves). I didn't want to know many details....I actually found out more after the surgery....how awful is that!

I know it's hard, but if monkey needs surgery, we'll be here to support you every step of the way.

[Nezzy]

Just remember each surgeon does it a little different..I would ask your surgeon to describe his/her process in detail..don't assume they'll do exactly what those drawings show.