[vlhperry]

I had a DBS 7 years ago in 2004. My neurologist reccomended I get the battery changed a few years ago. The Neurosurgeon said I should never have had it in the surgery in first place and refused to replace it. So I have been living without it. Now that I don't have a battery, I have been complaining to my neuro about it turning off. He checks my programming and states it has never been off. The difference is my husband took me to the emergency room 2 days prior for chest pain and spoke up on my behalf. The doctor then turned it off for awhile and turned them on.When he checked it with the programming devise. It showed it had never been turned off.

How can you believe in a doctor who believe the technology is more truthful than the patient her/himself? I am so tired trying to convince doctors I am telling the truth. I have turned off my DBS myself and refuse to turn it on.

Funny thing is, after the DBS has been turned off, I find no change in my symptoms. Perhaps the surgeon was right?

[Songfellow]

I expect to have the DBS surgery done myself within the next few months. The problem is that I know too little about it now to advise you.

My suspicion is, though, that you might want to contact the manufacturer of your DBS unit yourself. Not all companies are "customer-hostile".

Steve

[made it up]

Originally Posted by Margie.Angle

I had a DBS 7 years ago in 2004. My neurologist reccomended I get the battery changed a few years ago. The Neurosurgeon said I should never have had it in the surgery in first place and refused to replace it. So I have been living without it. Now that I don't have a battery, I have been complaining to my neuro about it turning off. He checks my programming and states it has never been off. The difference is my husband took me to the emergency room 2 days prior for chest pain and spoke up on my behalf. The doctor then turned it off for awhile and turned them on.When he checked it with the programming devise. It showed it had never been turned off.

How can you believe in a doctor who believe the technology is more truthful than the patient her/himself? I am so tired trying to convince doctors I am telling the truth. I have turned off my DBS myself and refuse to turn it on.

Funny thing is, after the DBS has been turned off, I find no change in my symptoms. Perhaps the surgeon was right?

Margie hi,
Let me know if I got this wrong but do you mean you have batteries (IPG's) inserted and it or they have gone flat but surgeon won't replace them?
If you can switch yourself off with programmer it must of been on.
Perhaps seek another opinion or a programmer/nurse to work things through?