How does one find the best DBS programmers?

[Jash]

Programmers hold the key to successful DBS, yet so little known about who they are and where to find them. Does anyone have advice about a directory or "Angie's List" that includes DBS programmers? How about when one is traveling-- where are they?

[tejas21]

Hi Jash

I live in South Africa and Medtronic ( the device manufactures ) Reps in SA arranged for a guy from India to come here and do batches of us at a time. Do not know where you are but Medtronic have bent over backwards to be more than helpful..........at no extra cost!!! + my wife who is my bright shinning star who does not take NO for an answer. hope this helps

[Pelley]

That is a real conundrum! I live in Iowa, less than 100 miles from the largest medical center in the world, The Mayo Clinics and Hospitals. As a matter of fact, The Medtronic Company isn't much further......

There is a real discrepancy in programmers. The Clinic and Company are currently establishing training and standardizations.

It seemed to me that before this the programmer was more like Jupetto while I assumed the Pinocchio role. Medtronics has to realize what their DBS therapies are capable not only now, but in the future.

There is reserch being done for other addictions and compulsions. It's a brave new world Big Brother!

[Jash in reply to Pelley]

Thanks Pelley,,,,that's interesting news

[Yogibear]

Interesting thanks for this info. I did not realise there were different programmers.

[Larryp]

the most important thing is to find someone with PATIENCE

[Larryp]

you may want to get a book called - Deep Brain Stimulation Programming principles and practice By

Erwin b Montgomery Jr

i decided i need to know the basics and Google is a great resource

[grammieof3]

Im on my third programmer first on turned me up all the way for his enjoyment and to show my daughters what he could do second one could have cared less have an angel of one now never in a hurry. Guess u have to shop around its a shame its on something so important

[Jash in reply to grammieof3]

Best to you...thanks

[moonswifey in reply to grammieof3]

My husband suffered at the hands of an inexperienced one after a surgery. Not his usual programmer, but an assigned person we were told was competent. She turned the equipment on at full intensity and he temporarily lost his eyesight and ability to speak, as he was coming out of the anesthesia. I was told this was normal behavior (seeing him behave like Stevie Wonder without any voice capacity). It wasn't until I threatened to sue that they brought back the neurosurgeon that turned all equipment off to examine him. Miraculous. He was again able to both see and speak. He grabbed the front of my shirt, pulled me close and said "she's trying to kill me". A medtronic programmer to the rescue. Got the settings correct, we refused to ever see that untrained programmer again and moved on from there. Back to the original, and he is our "superstar:"

[Hidden]

My Neuro 's assistant does all this for me! When she's not sure of something she calls Medtronics and they answer her questions! I guess I am missing the point and wondering why a programmer is needed if you have a Neuro that is familiar with DBS! But then my Neuro is the surgeon!!! I live in N. Illinois In USA, and I am blessed to have access to some of the best doctors available! My Neuro was involved in the development of DBS!

Blessings,

Carol

[Jash in reply to Hidden]

Thank you Carol

[Bpetie6]

The best aroud is Sierra Ferris, she was in Seattle and now has a new clinic in Denver at Swedish Hospital.

[Jash in reply to Bpetie6]

Thanks--great tip for all of us

[Hidden]

My experience has been the same as RealCaptain. My treatment is in Boston, and though finding the right settings takes a lot of patience from both my programmer and myself, I'm grateful everyday for all of my doctors and the programmer. I've also got the Medtronic device.

Best of luck.

[Jash in reply to Hidden]

Thanks...patience seems to be the real key...