Have you had DBS please share experience

[powerfemale]

What has been good, what hard? Has your speech been affected? R u still on medication? How long do the benefits last? Please share your experience.

[NevJ]

Hi, I had DBS a year ago. I’ve cut my Sinemet by a third since, but it took a few months before a really noticed any benefit. My speech is not really affected, but tremor almost nonexistent and rigidity much less. My “off” times are shorter and far less severe. No regrets.

[rodcarman]

Hi I had DBS two and a half years ago and it has been brilliant although the operation is a big one. I no longer take sinamet ,my tremor has largely gone and my voice whilst weak is otherwise fine. I think it would be weak anyway due to PD and anything more than that is down to “tuning” of the stimulator. I was diagnosed 11 years ago and have some slowness and stiffness but not much.

It is an individual choice but ima certainly glad I had it.

[movinngroovin1]

I have had it for 6 yrars PD started 22 years ago. It has saved my life! No meds!

[Aleagles]

Tremor is under control. Took quite a lot o calibration at first to get best outcome needs patience . Speech ok. On half meds now. Good for at least 10 more years at least. Would do again not for feint hearted though! Best

[etterus]

I’m a PIGD; no tremor but dystonia, 21 years. I had the surgery at OHSU in Portland with Dr Kim Burchiel under full anesthesia with electrodes placed in my GPI globus pallidus internus instead of the STN, subthalamic nucleus. I’m into my fifth year and though I’m still taking Rytary at the same level as before I am at least 50% more functional as I was prior to the surgery.

My voice is considerably worse in the last year but otherwise I’m doing pretty good. I would recommend the rechargeable battery unit because the GPI is a larger size and requires more stimulation if it’s chosen as the target

.... I wish I had it done earlier.