Has anyone with young onset Parkinson's with a DBS had any experience with it coming out of its "pocket"? I was stretching a couple of weeks ago and felt " a little something". Turns out the DBS activator (pacemaker in chest closer to my right shoulder) popped out of the Pocket when I brought my right arm across my chest to stretch! WOW! It's quite uncomfortable and now I must have surgery to re place it. Ugh! I was hoping to become much more active this summer, but will have to wait again. Thanks for any feedback.

Maripazsalas,

I'm sorry to hear about your DBS problems. I don't have any advice to give, but would like to welcome you to the forum.

The more people who recount their experiences and ideas, the more we can help one another.

John

Thank you, John, for your welcome.
I am putting this out there because it has been almost impossible to find out info about this DBS activator dislodging and I am sure that others may benefit from my telling my experience with this malfunction. I will also share POSITIVE things!
Thank you again.

I have had DBS for just over 1 year now. After installation of the unit into my chest of course I let it heal properly and did very little exercise with that part of the body for the first six months. Six months later I am back to a full body workout. I recently started the P90 workouts and have had no problem with the unit at all. I will be the first to admit, they could have placed the unit better. It is in an awkward place.

I'm impressed you are able to do those workouts!

Yes, so am I after 13 years of hell. I do have to be careful because my balance is not what it should be. I am going to do them until I can't while I can.

Hi,

I just joined your group as recommended by Bob Dawson.

I had DBS and had a Kinetra battery implanted in May 2005. I had the battery replaced in July 2008 with a Kinetra, and in May 2011, the battery was replaced with an Activa PC. In the fall of 2012, I started noticing that part of the battery had started to protrude through the skin. I had surgery in December 2012 to reposition the battery and the neursurgeon tilted the battery but didn't replace it. I had an appointment with my neurologist a couple of days ago in March 2013 as I felt that part of the battery was again starting to protrude through the skin. She agreed and said that it often happens in patients who have a slender build and who don't have much fat around the battery placement area. I asked if Medtronic was working on a smaller battery and/or one without sharp edges, and she indicated that they were not. The only thing she could suggest for keeping the battery in place was taping the battery with paper tape. One would think that a high-tech surgery like DBS would also have high-tech solutions to its problems.

Thanks,
Kate