[vlhperry]

Hi Folks,

I had DBS Therapy (both sides) done in 2004. My batteries are unstable so I have turned them off.

Why? The neuro Physician's Assistant I have been seeing said they needed to be replaced. The NeuroSurgeon told me I didn't need them replaced and the surgery never should have been done in the first place.

The next time I saw the Physician Assistant, he claimed to have been in error. My visits over the next few years showed a decrease in the reliability of the battery as well as shorter visits, (his schedule did not allow time for answering questions.) Finally my husband came with me to a visit. Again the Assistant queried my batteries and found theu to be running and to be performing well. Again I told them that was impossible as had felt them turn off, (a tingling sensation goes down the side of the body the battery affects) and my husband affirmed what I said. I was told there was sign that the batteries had been turned on. My husband then asked him to turn off the battery and then turn it back on. He did so, and required the battery. His programming still showed the battery as not being turned on. He finally admitted his machine could be incompatible with my device.

I turned off my DBS since that day and haven't had it on since. I became worried when reading the thread about stopping Sinimet cold. The discussion about NMS frightened me. I have had it off and have an appointment on Wednesday of next week to be tested neurologically by a new neurology group to measure what change in my system has come about as a result of turning of my DBS. I still am thinking of leaving it off. Am I Crazy?

Vicky

[made it up]

Originally Posted by Margie.Angle

Hi Folks,

I had DBS Therapy (both sides) done in 2004. My batteries are unstable so I have turned them off.

Why? The neuro Physician's Assistant I have been seeing said they needed to be replaced. The NeuroSurgeon told me I didn't need them replaced and the surgery never should have been done in the first place.

The next time I saw the Physician Assistant, he claimed to have been in error. My visits over the next few years showed a decrease in the reliability of the battery as well as shorter visits, (his schedule did not allow time for answering questions.) Finally my husband came with me to a visit. Again the Assistant queried my batteries and found theu to be running and to be performing well. Again I told them that was impossible as had felt them turn off, (a tingling sensation goes down the side of the body the battery affects) and my husband affirmed what I said. I was told there was sign that the batteries had been turned on. My husband then asked him to turn off the battery and then turn it back on. He did so, and required the battery. His programming still showed the battery as not being turned on. He finally admitted his machine could be incompatible with my device.

I turned off my DBS since that day and haven't had it on since. I became worried when reading the thread about stopping Sinimet cold. The discussion about NMS frightened me. I have had it off and have an appointment on Wednesday of next week to be tested neurologically by a new neurology group to measure what change in my system has come about as a result of turning of my DBS. I still am thinking of leaving it off. Am I Crazy?

Vicky

Vicky,
Try DBS yahoo group.
You'll likely get the support you need with some experienced DBS recipients.

[pegleg]

No - you are not crazy. They cannot even explain why DBS works. And for the record, everyone I have spoken to who has had any kind of brain surgery ( I estimate around 100 individuals), all report a feeling of symptom- free euphoria several days following brain surgery (where the skull is drilled enough to penetrate the dura).

Explain that one.
Peg

[Hammilton]

Not hard to explain at all. People expect to feel better and the prospect of symptom relief yields symptom free euphoria as you call it.

Expectation can have powerful effects.

[bluedahlia]

Peg, something to do with the swelling of the brain. Maybe the neurons are closer to each other? I felt great.....maybe it was the drugs!

In any case, I'm glad I had it done even though it isn't perfect.

[Jim091866]

Originally Posted by pegleg

No - you are not crazy. They cannot even explain why DBS works. And for the record, everyone I have spoken to who has had any kind of brain surgery ( I estimate around 100 individuals), all report a feeling of symptom- free euphoria several days following brain surgery (where the skull is drilled enough to penetrate the dura).

Explain that one.
Peg

Peg, I had DBS in 2007, for about 2 weeks following surgery I could function like I didnt even have PD! It's a phenomenon known as the honeymoon period, it is said that the brain cells are responding to being stimulated. The thing was not even hooked up yet! I only had the leads implanted!

[Tupelo3]

Originally Posted by pegleg

No - you are not crazy. They cannot even explain why DBS works. And for the record, everyone I have spoken to who has had any kind of brain surgery ( I estimate around 100 individuals), all report a feeling of symptom- free euphoria several days following brain surgery (where the skull is drilled enough to penetrate the dura).

Explain that one.
Peg

The sense of euphoria could be because the subthalamic nucleus (STN) and also the globus pallidus interna (GPi) (areas commonly stimulated for PD) are near the ventral striatum region, specifically the nucleus accumbens (NA), which is a common psychiatric DBS target. DBS done to the NA has been shown to rapidly induce euphoria, along with other mood changes.