Paula here is some information on PIG-D from the MJFF site: http://www.pdonlineresearch.org/pdgu...t-disturbances

My company works extensively with NIH and the FDA. The FDA can be helpful or very unhelpful to consumers. It is very difficult to get permission to do PPN surgery in the US because of the FDA...we tried and failed here first. I am glad we ended up going to Canada, although it was very costly to do so. In Canada the team at Toronto Western got permission to do Susan's surgery in three weeks from Health Canada. We waited for one year through a center in Florida and never got permission. If you go to Clinicaltrials.gov you will see that the only current trial of ppn dbs is taking place in France.

For Medtronics, the maker of most of the DBS stimulators there is no particular interest in supporting or pushing trials of PPN DBS. They can make enough money from STN DBS. It is a situation where there is insufficient motivation on anyone's part to push forward with the studies and research which would get this surgery more widely available. Also, since the PPN surgery is harder to do successfully doctors and hospitals aren't interested in increased risk that such a surgery would entail. Frustrating situation which at the end of the day is not good for patients.