deep brain stimulation

[DonnaMc1968]

I am considering DBS. Please share any experiences and outcomes that may help me make the decision to whether or not… thanks in advance!

[JayPwP]

Why don't you try the gloves, if you can have someone to make them for you?

[jimcaster]

Here's the result of a search for DBS:

healthunlocked.com/search/p...

[ottercat]

I had DBS in December. My PD (at the moment) is (or was) mostly a right-side tremor (hand and leg), and the DBS stopped it. I could write legibly again, carry soup from the kitchen without spilling. The doc put in bilateral leads, for the future (there's a tiny intermittent left-side tremor after I drink coffee sometimes). Other PD symptoms like too much saliva weren't changed. I don't care. For these 5 months of freedom from tremor I am hugely grateful. Still, the docs and medical technicians say DBS can address other symptoms as well. There was some evidence post-op: had a weird sensation that I was not myself, which was really troubling for a few weeks, until the next calibration session--one change of setting and I felt like me again. I have troubling word-finding issues which DBS did not address--and may have made worse. But everyone is different and at different stages of the condition.

Very best wishes to you in your decision process--and blessings for your future.

[Bunny622023]

Hi Donna, my husband has had PD since age 37, (Young onset) he is 61 now. He had DBS in 2012 because meds were losing some effectiveness. He would never change his mind about having DBS though. His was very successful and still is in keeping Dystonia, dyskinesia, Tremor (he had only very mild anyway), stiffness at bay. His speech was great before DBS though and has become progressively worse since then, with quiet voice. Many people seem to experience this but whether its from the DBS or the progression of the PD, we just cannot tell and I keep A LOT of statistics since 2002 on his symptoms and effects of different meds, DBS etc.

The other thing that is far worse since DBS is his falls. His walking is fine, he can walk fast and easily unaided. He has lost cadence though. BUT his falls front, side and sometimes back are bad. He has bad postural instability and no core strength. He has mild cognitive issues going on with Executive function now which again could be from DBS or progression or both. It is known in both STN and GPI DBS placements. He had GPI DBS bilateral and the surgery was all at once. No issues. Mild swelling of the head, bruised looking eyes. That was it. He had a short honeymoon period from what we can remember. Programming of the DBS afterwards we found and still is, THE most important part of successful DBS use. Being able to change program for different symptom control. He has 4 programs on his. 1 for speech, 1 for stiffness/dystonia/dyskinesia, 1 for gait and a spare 1. He is on 2100-2200mg Sinemet per day which doesn't cause Dyskinesia normally.

I can only say after asking him, that he feels the good far outweighs the minuses. BUT as I always say - that is him. Everyone's journey is different.

[euFM7RO]

Good luck in your decision making. One thing that is rarely discussed is having MRI scans with DBS. Some modern DBS devices allow the use of MRI imaging; you should be sure that yours has this feature.

Even with the MRI feature you'll need to be careful as exposure to the MRI magnets during scans is time limited--30 minutes of continuous exposure. Most MRI facilities are knowledgeable about using MRI on DBS patients but many are not. You will find yourself being an educator.

One more thing to consider is that any future surgeries you may need that might require electrocautery will require discussion with the surgeon/anesthesiologist as your therapy will likely need to be turned off during surgery and switched back on after. Many surgeons are not aware of this--again, you are the teacher.

These two things are not usually discussed during the DBS "sales" pitch. Neither are insurmountable but will require your attention.

[MJKittyLover in reply to euFM7RO]

My Medtronic neurostimulator has a MRI setting. I'm glad as I will be having one soon.

[JohnPepper]

HY ARE YOU HAVING SERIOUS SURGERY WHEN THE WAY TO OVERCOME pd IS TO:

WALK AS FAST AS YOU CAN,, FOR ONE HOUR, EVERY SECOND DAY!

i HAVE HAD PD SINCE I WAS 52 AND I AM NOW 89 AND STILL LIVING A NORMAL LIFE!