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Topic Second DBS Surgery? Go to previous topic Go to next topic Go to higher level

By mytngenes On 2013.10.08 11:45
Have any of your PWPs who have had the DBS surgery had to have the brain stimulators replaced or moved to a different location within the brain?

I'm afraid my husband's Movement Disorder Specialist is going to suggest this at a doctor's appointment later today. The reason I say this is because in an email to me the doctor mentioned the possibility that the stimulator wires "may need a new target" and I'm taking this to mean a new area of the brain.

My husband exhibits a lot of panic, impulsive behaviour and his judgment is very impaired. We've been trying to manage both with reduction/increase in meds-Carbidopa/Levadopa, Seroquel and Clonazapam. The incidences continue so I'm guessing the doctors think this is why he needs a new "target area". His "impaired judgment" and impulsiveness include taking car keys/money out of my purse and driving wherever he wants to go while I am asleep, saying he's going next door to talk to neighbor but he's actually walking off from home to the nearby grocery store via major highway, getting a neighbor down the street whom he does not know to drive him across town, as well as deceitful scheming and lying to get what he wants. At this point he cannot be left alone and has a full-time caregiver, not so much because of physical difficulties of Parkinson's but because of these behavioral issues and of not having a sense of "I should not do this". This is extremely frustrating. Most of these types of occurrences happen whenever I am home with him and I am either asleep or busy with household chores, cooking dinner or on the phone. And he gets very angry with me whenever I try to prevent him from doing something I think he should not do, like walking to the grocery store.

Sorry, I guess I veered off topic....

For those who've had the DBS surgery, what are your thoughts on this second surgery to move and re-plant the stimulator? Would you do it?

I welcome any thoughts, suggestions or ideas. Thanks.

By Threadhead On 2013.10.08 12:56

By mytngenes On 2013.10.08 13:50
Thank you, Threadhead for your reply. It is good to know others have had multiple DBS surgeries/placements and that they have been successful.

You are right, I am doubtful, but I've been doubtful since the beginning. I never really understood why my husband was considered to be a good candidate for DBS in the first place. He was dx'd in 1998 at the age of 46 after having spent 4 years trying to determine what was wrong. He did not present with typical Parkinson's symptoms-never had tremor. His issues were/are rigidity, pain, weakness. My understanding was that the DBS would help in the reduction of medication. At that time he was on a lot! Mirapex, Sinemet CR and Comtan for the PD and Effexor for depression. He was not able to reduce any meds until about 2 years ago when we absolutely had to come off the Mirapex. He had all the documented issues with Mirapex.

The panic and impulsivity began about 3 years ago and has just escalated. Add in the impaired judgment. And here we are.

I wonder, just a question on my part, if the DBS itself, the intrusion into the brain, is the cause or contributor to the behavioral problems. That's my biggest concern about re-doing the DBS.

I appreciate your thoughts on the Seroquel and Clonazapam. That is something I need to ask about. They do seem to help him though.

Again, thank you for your reply.

By mytngenes On 2013.10.08 23:55
Update post doctor visit: The MDS and neurosurgeon do not recommend replacing stimulator lead wires at this time. "Riskiness of surgery outweighs any potential benefit". The problem lead wire is basically non-essential, as it is 1-out of 4 and is the least used.

As for behavioral issues the doctor says hubby's lack of "filter" suggests he needs a companion/buddy with him at all times. He already has a daily caregiver and many incidents involving poor judgment have occurred while I am at home but either during the night/early morning while I am sleeping or in the evenings when I am busy with chores after working all day.

So, what's the answer for monitoring hubby 24/7? I welcome ideas, thoughts.

By parkinit On 2013.10.13 22:07
I'm glad you found the answer about DBS. I found it interesting your spouse didn't have the tremors. Mine didn't either. He was able to reduce meds for about a year (by about 1/3 of what he had been taking), but then we started to slowly start to increase again. Now (4 years later) we are taking meds again every 2:15 and this is not soon enough (1.5 sinment 25/100).

What about an alarm system, video cameras you can monitor away from home (on your cellphone or iPad)? Do you have someone you can call? My thought is possibly an alzheimer's unit that is familiar dealing with this type of thing or maybe just tour one to see what systems they have in place?

Just throwing out some ideas... Best of luck to you. Let us know.

By oshroshr On 2013.10.14 09:33
Hi. I have been reading the forum and posting just a little. But now we are facing the DBS. What is it like? Will my husband need support right after surgery?
The team has us scared to death. He whole med regime has changed over this last year. I am very anxious and he is too. But the meds are not working and their side effects are becoming unmanageable.
When I read the forum he has had or has most of them.
How long do benefits if surgery help or improve quality of life. I think they have waited too long.

By parkinit On 2013.10.18 16:32
My husband was put in something he likened to a straightjacket and was sitting upright during the operation. He was being operated on for around 3-4 hours as they do lots of testing on the probe to find out which of the 4 areas on the probe receives the best response. The recovery was overnight in a neuro ICU, and he was release before noon the next day. He felt good, but was just a bit tired. The stimulation alone will probably allow reduction of meds before they even hook up the probe wire to the battery boxes, which is normally a separate surgery. It was more of a major surgery to my spouse as the brain doesn't feel pain. The areas in his torso where they inserted the battery boxes definitely felt pain!

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