Sorry, my neurologist only told me general details. I imagine if you do a search on "Rochester MN Mayo Clinic Neurology" you should get a link.

Charlie, I understand your enthiusm for DBS. I am also grateful for the technology as it saved my life. Please keep in mind that patients have to give themselves time to be educated and have some experience of living with PD. You must remember what Debrah Seltzer underwent by having DBS before knowing exactly what her diagnosis was. She was very educated. She also was left with unnecessary brain injury. She was very helpful in educating the Parkinson's community about the FDOPA Scan which most doctors would not educate patients about. The reason was the cost of the scan would not change the treatment for the patient. That is starting to change as neurologists are beginning to listen to patients.

Love,
Vicky

Vicki;

It behooves anyone contemplating a DBS, to learn as much about it as they can, with programming in particular.

This is ESPECIALLY true of where the good programs are located and which one's to avoid. I would hope that people would make up their own mind.

In CS's case, I am pushing it because he is a great guy and I hate to see him suffering so, when their is relief available.

Deborah Seltzer was a unique case. I would just say that I draw few if any conclusions from her case that would apply to the rest of us.

My MDS took one look at her MRI and said this lady has Chari malformation. Why the docs at Wake Forest did not see it??? Who knows??

FDOPA PETscans are expensive and unreliable. The isotope has a half life of 24 hours and fresh "juice" is needed to get a good result. I have been told that only UCLA and Robert Woods(I think) have the nuclear medicine facilities to reliably make it.

Operator expertise is extremely important too.

We all have to travel our own road. I got my DBS after 12 years with PD. I have a guy that just joined my group that had his two years after his DX , due to his inability to tolerate the meds.

My advice to everyone is when your quality of life stinks, you are off more than you are on, your meds aren't working and you are maxxed out, well its time to consider a DBS.

Charlie