just diagnosed

[lemonwrinkles]

Hello,
I was recently diagnosed with ACM type 1 and I was wondering how bad does it have to be for you to have surgery? I think mine was 4-5cm. Or does anyone know what the neurosurgeon might want to do?
Thanks

[LIZARD]

The herniation size actually matters little; it's whether or not you have debilitating symptoms, what they are, and whether or not they're significant enough to warrant surgery. You should also be checked for adequate CSF flow through the upper spine and syrinx (cavity in the spine). Many patients don't have surgery immediately. My son, 13 next month, was dx'ed at 5 1/2and has yet to have surgery.

The first thing you need to do is see the nsg and get his opinion about it. If you don't have an appt and need to find one, check out these sites for referrals:

www.ASAP.org
www.WACMA.com
www.chiarione.org
www.conquerchiari.org

Good luck...

LIZARD :)

[Rozia]

Lemon first you must have a dr. that really knows this disease and there are experts all around the US . Where do you live?

[lemonwrinkles]

I sent my films in to Dr John Oro in Colorado. So I'm waiting to hear back from them, hopefully next week.

[Rozia]

Great you are on the right track . He is one of the best .

http://www.chiaricare.com/