DBS at a distance

[Agate_17]

basic info: 69 yr old female, Parkinson’s diagnosis Jan 2010.

The first 7 yrs I lived close to OHSU in Portland OR and received excellent care. Then moved to a remote area 900 miles away with limited choice for PD care. A neurologist here but no movement specialist. The local hospital performs “awake” DBS.

I’ve had several back procedures over the past 18 yrs where I was lightly sedated but no anesthesia . In 3 cases I went vagal and passed out. The procedures were aborted. Therefore, I have started the process to go back to OHSU for DBS surgery where I would be under anesthesia. They seem to be able to provide distance patients with a more compact process. I mostly wonder about difficulties post surgery with programming and living so far away. It is my understanding that one of the devices (Boston Scientific) can be programmed via Bluetooth . Have any of you had experience with this?

[Juliegrace]

My doc is two hours from my home so I feel your pain. We did everything we could remotely, but the programming I’m having has to be in person (Boston scientific) although there are some adjustments we are able to make on our own.

[Agate_17 in reply to Juliegrace]

Thank you for your advice.

[virgo1234]

My husband has a Boston Scientific. There are some minor adjustments that can be done with his remote control. But the actual tunings are with the doctor in office.

[Agate_17 in reply to virgo1234]

Thank you!

[PD-CareGiver]

OHSU is very good regarding DBS surgery and the after programing after surgery. You may need many different programming to find the right one. So pick the one that can be programmed remotely. My husband has Medtronic's and can't be programmed remotely We had to go to UCSF at least 10 times for DBS programming. His surgery was done at UCSF. I used to live in Portland and heard good reports from friends about their Neurology dept. Recovery from surgery is easy. Good luck.

[Agate_17 in reply to PD-CareGiver]

Very helpful thank you. I am very comfortable with the Dr. and staff. The distance is considerable but it may be worth it.