Blepharospasm Bulletin Board

There is a gal named Beka Serdans who runs an organization called Care4Dystonia (www.care4dystonia.org). She is a career RN with Cervical Dystonia who had DBS in late 2004. She has had mixed results, some success but an awful lot of problems. Below is a link to an article she recently wrote in her newsletter that give tremendous detail on what she's been through, so that would be something you should read.

I have been told there are a couple patients with blepharospasm that have been helped by DBS, Dee Linde and Sandra O'Malley, but I don't personally know of them. Here are some other resources to check out:

http://health.groups.yahoo.com/group/DBSsurgery/ - Yahoo Group for DBS

http://health.groups.yahoo.com/group/DBSforDystonia/ - Yahoo Group for Dystonia patients regarding DBS

http://neurosurgery.medschool.ucsf.edu/patient_care/movement_patientFAQ_dys.html, which is the FAQ about DBS page at University of San Francisco.

I would encourage you again to make the short drive out to my house in Sarasota and try the screen room concept and frequency generator concept before you agree to have DBS surgery.

TomSpasm