Valid point, can't explain the discrepancy. The more I read the more I realize the many potential cons, although everyone seems to agree that they're glad they did it, overall. Regarding speech, I have to say I have problems now when the C/L kicks in. So much to think about. Thanks for the input -

at least for the U.S. how long does the clinical trial last and can you go to a different programmer? i can imagine how frustrating it can be since it seems very trial and error getting the right adjustment and from what i know about the BOSTON is there are more adjustments that can be made than with medtronicsf? sorry if i am making the wrong assumptions. in the discussions i've had with members of the DBS team where i'm having the DBS, they did mention sometimes when they change the settings to reduce one problem, like freezing, it can also have a detrimental affect on speech so they can give you 2 settings, one for when you want to be more physical and another when you want to be more social, i have no idea how well this works and if there is any downside to rapidly changing voltage/currents in your brain. my speech is declining, best in the morning, worse as the day goes on and it is hurting me socially, at times i just don't say anything.

After debating this decision for 6 years I've decided to sign up for DBS. Soccertese has motivated me to do this! I've read that it likely will improve my quality of life and saw a study or two that show that DBS increases lifespan in most cases. I've talked to two folks personally who have said that DBS gave them their life back! Yeah I'm all for those two benefits! One question I have though is where should I have the stimulator placed, near the collarbone or abdomen? Does anyone who has had DBS have a recommendation?

Soccertese, the swallowing problem after DBS is a well-known side-effect and not just specific to Boston Scientific, it applies to Medtronic as well (many refs in the literature). As I mentioned, it can sometimes be improved with proper programming, but that takes a while to get it just right. Often it apparently involves over-stimulation to correct tremor, but it's that balance between motor problems & side effects that I referred to above. May be a trade-off required. I'm still hoping it may be improved & have another programming session scheduled for next month.

From the information below it sure looks like the swallowing issue can be managed by changing the stimulator frequency!

Adjusting Deep Brain Stimulation Can Ease Swallowing and Freezing of Gait in Parkinson’s

Results

Freezing of gait was significantly improved with DBS at 60 Hz.
On questionnaires, study participants reported an 80 percent improvement in their ability to swallow with DBS at 60 Hz compared to 130 Hz.
As viewed on a swallowing test (modified barium swallow study), DBS at 60 Hz reduced the frequency of aspiration (breathing in liquid when swallowing) by 57 percent compared to DBS at 130 Hz.
For one participant, resting hand tremor worsened with DBS at 60 Hz; this participant returned to 130 Hz DBS after three weeks.
These improvements lasted as long as DBS was set at 60 Hz.


Adjusting Deep Brain Stimulation Can Ease Swallowing and Freezing of Gait in Parkinson’s - Parkinson's Disease Foundation (PDF)

As you may know, my wife has had tremor dominant PD for about 13 years.
Hallucinations with insight began maybe 10 years ago. She is now very disabled, on a lot of Rytary and fast release C/L as well as psych meds which she often does not take. Her psychosis is severe to the point 911 is called almost weekly.
My question to you all is, was/is psychosis or hallucinations caused by PD meds a problem for you and was it considered when being evaluated for DBS?

Glad you have decided to go with DBS. My inner tremors were driving me crazy, They are gone now. Left side tremors too. But right side is stubborn because Dr. said the trouble spots were spread out and not clustered together. So he has to amp it up to get them but then that gets into the speech area,so speech can be affected. I thought I preferred the tremors minimized and the speech sacrificed. BUT I found out the opposite to be true. So the next visit he lowered the power and the speech came back.
I did gain 10 lbs but weight has stabilized. Energy level is way up. Apathy is gone. Planning another trip when I just got back from another. Babysitting active grandkids a lot this summer. My surgeon said that rigidity is not a problem anymore after DBS and that is the number one thing his patients are happy about. I have to agree
with that!

You are disabled by pd. You should be covered by Medicare. I got disability at age 58 and then you have to be on disability for 2 yrs to get Medicare. You don't have to wait til 65.

My surgeon suggested a nonrechargeable 1 pack in my abdomen instead of 2 packs below the collarbone. I am glad I took his advice. I'm quite pleased .(I'm notorious for not listening to drs). I'm slim so the packs by the collarbones would show. Skin is too thin there. And I don't sleep on my stomach.

i have been rejected by SSDI thru the 3rd step of having a hearing before a SS judge. my case is before the appeals board. SSDI is an insurance policy with specific earnings requirements the last 5 years from when you apply, your SS benefits are set while SSDI benefits have a 5 year window and suffice it to say i really screwed up getting SSDI, applied in 2015 and had to prove i was disabled before 1/01/2013. tough to do when i rarely saw my neuro, rarely saw my customers, lived alone and never let anyone see me "with pd", i responded very well to L-DOPA even after 10years. knowing i had a tough case i hired a lawyer from the get go, the lawyer told me she had never had pd case go before a judge before.