Deep Brain Stimulation

“Know what you want to know.” — Marion Lewenstein

There you have it – the distillation of my Stanford education in six little words. Save all that expensive tuition and meditate on this quote instead.. Marion Lewenstein was my journalism instructor at Stanford- I had the pleasure of visiting her during a reunion in 2017. She died last year (2021) at 93.

But I digress. What do I want to know about Deep Brain Stimulation ?

Why am I investigating DBS?

I consider that there are three stages of therapy for PD:
1)Ignore it
2)Apply non-invasive therapies like drugs and physical therapy.
3) Surgery, specifically DBS. 

I was disagnosed 10 years ago. While I haven’t exhausted every drug in my neurologist’s bag of tricks, I’ve certainly sampled many.  So the surgery is  the next level to investigate.

What is DBS?

Deep Brain Simulation is a brain surgery to implant a device that sends electrical signals to brain areas responsible for body movement.  The most common targets are internal globus pallidus (GPi) or subthalamic nucleus (STN),. The exact mechanism by which DBS works is not completely known.

Who is appropriate to have the surgery?

The ideal candidate for DBS surgery is under 70 years old and is in good health.  The equipment  requires a fair  amoun of self-management, so patients slipping towards dementia are not good candidates.   Patients who fluctuate between “on” and “off” medication states are usually good surgical candidates, as are those who have dyskinesia.  (I haven’t detected an on-off pattern  of medication effectiveness, but I certainly I’ve got the dyskinesia.)    Patienets whose main complaints are non-motor   also  would be not good candidates.

Do they really saw your brain open with only local anesthetic?

In DBS surgery, the surgeon places thin wires called electrodes into one or both sides of the brain, in specific areas (either the subthalamic nucleus or the globus pallidus interna) that control movement. Usually you remain awake during surgery so you can answer questions and perform certain tasks to make sure the electrodes are positioned correctly

What’s the history and track record for DBS?

Around the world, more than 150,000 patients have had DBS for Parkinson’s or tremor with a success rate of 95%.  The operation was developed in France in 1987.

What is the definition of “success”?

While DBS does not halt disease progression in PD, it provides durable symptomatic relief .  “Success” would be that pain management for motor symptoms is more effective than through medication alone.  “Success” for DBS does not mean you can throw away all your pillboxes; most patients still require medication but (typically) not as much as before the surgery.

What symptoms does DBS help?

The surgery works best for motor symptoms (slowness, stiffness and tremor). It also may help some walking problems — especially those caused by slowness, dystonia (abnormal muscle cramping), or dyskinesia (involuntary movement).

What are the side effects and risks?

Check out  this link for a good summary of pros and cons. The biggest risk is of course:

Hey! this is brain surgery!!

DBS may worsen thinking or memory problems.  (Uh oh, my memory has suddenly  gotten much worse.  Couldn’t even remember my mother-in-law’s  first name!

Who makes the DBS equipment?

Abbot “Infinity”

Allows directional stimulation to guide electrical stimulation toward areas associated with symptoms and away from side effec.t  Non-rechargeable battery.

Medtronic “Activ`”

First DBS vendor (from 1997).  Choice of rechargeable or non-rechargeable batteries.

Medtronic “Precept”

Just approved in 2020.  First-of-its-kind device can sense and record an individual’s unique brain signals. This data could be used (in future) and “might eventually lead” to more precise DBS adjustments.  Curently has directional stimulaiton. (Hey kids!  More fun than Easter Egg hunts!  Take a look at the original source and count how many weasel words you find!)

Boston Scientific,”Vercise”

Vercise’s brain leads allow directional stimulation, albeit by a different technique than Abbott’s and Medtronic’s versions There are three different Vercise models. Some have rechargeable batteries. And some let the clinician visualize models of where leads are in your brain while finding or adjusting settings.

What are my expectations? Realistic?

My biggest need right now is to straighten out my posture, so I can stand and walk. I’d also like to get rid of the “Bozo-balloon bouncing” (dyskinesia).  I don’t know if this direct  electrical stimulation is an answer… I will pursue during my assessment day, June 2.

About Laura Kennedy Gould

Laura woke up one morning in June 2012 and "as if by magic", her right hand was tremoring. Diagnosis: Parkinson's. Laura writes about Parkinson's research, Parkinson's people, and her own journey in her blog: "The Magic Trick -- Life with Parkinson's" (https://magictrickparkinsons.wordpress.com/).
This entry was posted in Parkinson's Basics, Parkinson's Research, Posture, Side Effects and tagged , . Bookmark the permalink.

4 Responses to Deep Brain Stimulation

  1. Jean D. says:

    Laura,
    good luck with this approach, if you decide to go for DBS. You are a good candidate from several points of view, not least of which is that you understand so much and approach things logically. I can imagine that you are especially keen to walk securely/upright again. Mobility is such a huge part of life — I am spending two days this week with two people who walk only from the house to the car to the immediate close destination and it is frustrating for me as the “hostess”. Imagine what it is like for them. And YOU.

    Like

  2. Ask about infection and other bad side effects of the surgery. A friend of Cheryl’s had some sort of infection which caused the surgeon to remove the device and treat that. Later the DBS device was re-installed. I do not remember the manufacturer. Others we know have had few problems. None of those folks have had any dramatic “cures”. All are still putzing with adjustments of the device and meds. On going adjustment… In Cheryl’s case she is experiencing symptoms of dementia and is uninterested in anyone poking holes in her skull and she is over 70.

    Like

  3. Pingback: Deep Brain Stimulation — The Magic Trick – Life with Parkinson’s | Adjunct_Wizard

  4. Best wishes on this next step of the journey.

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.