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Gaganbal

Living with DBS Questions

5 posts in this topic

Hello people! To start, I would like to give a little back story. I was a healthy 7 year old boy when I had a stroke playing outside. Although many tests were performed in the years that followed nobody could explain why I had a stroke. The stroke caused the left arm and leg of my body to shake. Essential tremor us what they called it. I was offered DBS surgery 6 years ago at the age of 12. But my family decided to not go through with it. Because my symptoms were "reasonable to live with." I have some questions for people that have had deep brain stimulation. We'll now I'm 17 and I was offered DBS surgery again at the UIC hospital. This time I took the leap and did it. I'm glad to say that my Surgery went well. I got the electrodes planted on April 1st and the battery installed on April 10th. My battery won't be smarted till next month but I have some questions.

1) like many 17 year old kids I like to go to the gym and play sports. I know that sports like football are a big no but like running on the treadmill or lifting weights...are those ok?

2) I feel my battery a little bit not a big deal but it's something I'm gonna have to get used too... How long did it take for u?

3) I know the wires in my neck Are very flexible so they won't break easy. But other than the first day or two can u ever feel your wires. I know the feeling is disappearing for me. But I also have a sore neck right now. Kind of like the one when u sleep wrong...anyways besides that do u ever forget there are wires your chest.

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Most activities that do not require contact to the device inclusive of sports are ok (don't hit the device).  Climbing and ladders are usually off limits for my patients.  The wires and the battery pack can be annoying, but in most cases these sensations go away within 6 months.  In rare cases we adjust connectors and batteries.

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After DBS we do not want people to fall and sustain a head injury, other injury or break the device.  Additionally, in some indications the DBS can affect balance.

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As Dr. Okun says avoid any injury on the head or chest. You will get used to the wires. I still feel them, but gradually they become a part of your body. Is the DBS unilateral VIM or bilateral STN? Good luck.

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