So You’re Considering Deep Brain Stimulation

You're thinking brain surgery. Yikes - how did it come to this?

A blog reader wrote me saying that he was considering Deep Brain Stimulation (DBS) for Parkinson's Disease. This gave me the opportunity to summarize my ideas before his initial DBS consultation/evaluation:

Some people cope with the anxiety of surgery by learning details, whereas some cope by getting a broad overview. Do you prefer specifics or generalities?

If you want to learn about specifics...

Purchase Shaken at:
http://www.lilafilms.com/shaken.htm

Watch the DBS story on Wired Science on PBS:
http://www.pbs.org/kcet/wiredscience/video/255-deep_brain_stimulation.html

Read Joel Davis and Steven Gulie's DBS stories listed on my blog under the PD/DBS Link at:

Joel Davis:

The Heart of the (Gray) Matter
http://www.newsreview.com/sacramento/Content?oid=oid%3A30716

I Knew the Drill
http://www.newsreview.com/sacramento/Content?oid=327152

Steven Gulie:

A Shock to the System
http://www.wired.com/wired/archive/15.03/brainsurgery.html

Wired Science Explores Deep Brain Stimulation
http://www.wired.com/science/discoveries/news/2007/11/wiredscience8

Read my DBS/Programming stories on my blog at:
http://katekelsall.typepad.com/my_weblog/parkinsons_deep_brain_stimulation/index.html

Join the free DBSsurgery Yahoo group at:
http://health.groups.yahoo.com/group/DBSsurgery/

After joining, write an email of introduction to the group, including where you live and where you are considering surgery. Hopefully there will be someone in the group who has had DBS at the same center with the same team. Ask lots of questions. People with PD like to help.

Once you are a member, check out the "Files" section to obtain a list of questions to ask neurosurgery team at your appointment.

Check out the DBS-STN link at:
http://www.dbs-stn.org/links.php

Check out the Medtronic sites at:

Home page at:
http://www.activadbs.com/

Questions and answers page at:
http://www.medtronic.com/neuro/parkinsons/activa_qa.html

Check out National Parkinson's Foundation's Ask the Surgical Team site at:
http://www.parkinson.org/NETCOMMUNITY/Page.aspx?pid=258&srcid=198

Prepare a list of your questions, concerns, worries about DBS and bring to your appointment. Don't leave your appointment until your questions are answered. After the appointment, ask yourself if you would be comfortable with this team doing DBS (as comfortable as one can be considering it's brain surgery).

Ask the neurosurgeon for a list of patients and couples who have had DBS that you and your spouse could talk to by phone or in person. Ask if there is a DBS support group that you and your spouse might attend.

Good programming is just as important as good surgery. Find out all the details about programming.

Take two aspirin and call me in the morning (just kidding). If you are not terrified about proceeding with DBS after doing all of this, call me or send me an email, and we can talk further.

Good luck.

Comments

[Charlene]

hey I have been wanting to get in touch with you about the big bash you have coming up I believe in September...could you give me some times and dates so I can make arrangements to come and maybe set up a meet for so of the guys from patientslikeme.com. Kaylee was with me at the Young Onset conference in Atlanta and said she would like to get us together....I'm from Vandalia Illinois...so not too far...drop me a line love pokie