hi, i posted this under another thread but am repeating it here, you commented on some of my questions on another thread so sorry that i'm being a little redundant in my questions

"TRYINGYOURBEST,
just curious, i'm signed up for DBS evaluation and it looks like a very rigorous series of tests in 1 day, especially being non-medicated for 12 hours. would you mind summarizing your testing experience? it seems like besides gathering info necessary to present to an insurance company that you need DBS they also want to make sure you can withstand a day of stress that won't be nearly as bad as what the DBS operation will be like plus see what support you bring with you? Did you wonder about this, cuz it seems like they could easily schedule multiple appts for the URDS(?) unmedicated eval, depression, dementia and final neuo exam. sorry about being so nosy. "

i have no tremor, just extreme rigidity, 12 hours off will let me be a great male model, absolutely no movement.

It was not all on one day. I've had over 4 days of different apptmts so far. 1) for the cognitive test, 2) for the on off testing where you come unmedicated but then you are given the med after a quick observation by your dr, 3) op for the electrodes where you are awake about 6 hrs, and 4) op for the generator when you are asleep about 2 hrs. So you have to endure really just 1 long day w/o meds.
I like how my DBS was done. Very smart. If they try to do it in one day then maybe shop around. A very experienced place/drs will know how to handle patients like you on the op day. You will need someone to be there for you for the unmed days. I know a friend with pd that had gone rigid and couldn't move at all on the day of his op and had to be carried into the hospital for the op. Hope this helps.

I too just had DBS, done in 2 surgeries, one in Dec. & one in Jan. Both were "awake" surgeries, though you get some sedation type meds to help you through it, and you are put completely under briefly for the chest implantation. Being awake for the drilling into the skull was the hardest for me (not painful, just LOUD), and having to wait in hospital bed for the surgical team to arrive while off meds, because I was extremely & uncomfortably wiggly (would have been fine if allowed to walk around while waiting). I did the neuro-psych testing a couple of weeks before that, no problem. Since I'm participating in a "blinded" study for a new device, the wait to know that I've been turned on (maximally activated) & properly programmed has also been very difficult (a very slow 12 weeks, still 4 more to go). But I did get a brief preview of the way things could be, possibly due to post-surgical brain swelling or a brief "honeymoon" effect, and it was unbelievably wonderful! Hope I can get back there soon.

I should add that I was considered a very good candidate for DBS: tremor dominant, never responded well to PD meds, good cognition & neuro-psych test scores, few other symptoms, age 70.

Hi,
My wife saw an MDS specialist at Mass General Boston yesterday, he seems very competent and caring. They do DBS there. As I have mentioned in the past, my wife probably has serious L-dopa induced psychosis. She is taking approx 1300 to 1500 mg of Sinemet every 24 hrs. Until the doc gets to know my wife, he is going to put her on Rytary - 3 pills every 3 hours except for a break 4-5 hour break after 11pm. She is also seeing a new psychiatrist who my change her from Seroquel to Clozapine for psychosis, if she takes the pills. The neurologist will evaluate her for DBS at a later time. He wants to see if there is an organic component to her psychosis which, I suppose will eliminate her for DBS. I mentioned ECT (shock treatment) as a possible alternative. He may consider that as well.
Have any of you who have had DBS, been evaluated for DBS or talked about DBS with those who know have/had issues with psychosis??? It does tend to occur after about 8 to 10 years of PD.

I'm sorry she has serious L-dopa induced psychosis from the Sinemet. Hopefully, they will find the right meds so that she can qualify for DBS. I always make it a practice to become familiar with each drug's side effects. Sometimes the side effects are worse than the original health issue. I know that I was asked questions to see if I showed signs of psychosis.

Hi Peony,
Looks like we have very similar PDism! I'm glad Sinemet didn't work for me so I wouldn't have to go down that path. I wait 2 more weeks for my turn on day. My right hand is tremoring less now and nothing slowed it down at all before. So maybe the electrode is interfering with the brain's firing even though my generator is not on yet. Weird. You are brave to try a new device. Is it by Medtronic?

I agree about the screws. Ugh!

"good candidate for DBS: tremor dominant, never responded well to PD meds, good cognition & neuro-psych test scores"

I am being considered for DBS but it was my understanding that an initially robust but diminishing response to L-dopa was a prerequisite (on/off) am I mistaken?

Billy, that is the rule of thumb, EXCEPT for tremor dominant type Parkinson's. If you are truly tremor dominant (tremor was your first & worst symptom), then DBS will probably work to improve symptoms, whether or not your tremor improved with Sinemet (C/L). According to my neurologist, the tremor of most tremor dominants does not respond to Sinemet. Mine, for example, never did & I am not alone. Just another reason to respect the fact that PD comes in different flavors for different people. We are not all the same.

Dear Trying, not brave, just desperate! Tried very hard to understand & appreciate the options available to me. The new device is not by Medtronic. It's by Boston Scientific & is already in use in Europe & U.K., but trying for FDA approval here in U.S. It may have some advantages over Medtronic: longer battery life, more programming options, etc. BTW, the screws for the halo didn't bother me at all. The drilling in my skull in two places in order to place the leads: that was bad, very loud & traumatic to me!

What you said was my 1st understanding of DBS of helping only those who responded to meds but upon more research I discovered what Peony has said is true about dominant tremor PDers. Also, I found out that DBS is used on those with success with just Essential Tremor too. DBS will help with 1) tremors 2) muscle rigidity 3) slowness of movement according to my doctor.