Anniek, I really enjoyed your comment. I really enjoyed the part of stretching your neck to help rid of the scar tissue around the extension. I also wonder
if the pulling sensation could be a adverse side effect from long term stimulation of the STN. My stimulator is now turned off (Ihave the option ) and some of the tigtness and pullig has gone. I would really apprecate yor comment. Confused and ready to call it quits ) Lee Ps. I have myoclonus-dystonia simular to Hallervorden Spatz disease
Subject
Re: implanted wires from DBS
Date
28 January 2004
Posted by
anniek
Agnes - when I had my surgery, the neurosurgeon told me to keep stretching that area of the neck, even just after the op. Apparently granulation tissue forms around the extension, and if you don't keep the wires moving by gently bending your hear/turning it left and right, and bending it sideways for the first few weeks after surgery, it tightens around the wires and restricts your movement.
I can hear you say "That's no use to me at this stage"! If there is someone else reading this it might help them. Anniek
Subject
Re: implanted wires from DBS
Date
23 January 2004
Posted by
Brent Gearhart
I had similar "pulling " sensation after DBS surgery (Aug 2001) . This was uncomfortable at first but disapeared completely after about a year.
Subject
Re: implanted wires from DBS
Date
22 January 2004
Posted by
Lee Buckindale
Agnes, I can identify you 100% I have the same thing except on my right side since the electrodes and extension as well as the battery are all on that side. The pulling on the scalp may be due to when the stitcht it up and the skin is very tight. The extension runnning down the side your neck may have scar tissue that has attached to your shoulder mucsel which pulls when you turn your head or move your shoulders, or another possibility is that your extension wire is not the right lenght(to short). This situation should be brought to the attenion of your neurologist or or you neuosurgeon I hope this gives you a better understanding of what may be the problem. Good luck! Lee
Subject
implanted wires from DBS
Date
11 January 2004
Posted by
Agnes
I've had STN-DBS in Sept. 2003. Since then I am experiencing sharp pain in left shoulder; pain is worst when I wake up in the morning and when my medication is low. I am also feeling a pulling sensation of the wires from the top of my head (incision site)to where my batteries are implanted (pectoral site). Has anyone else experience this? And what and/or who do I address this to? the neurologist who does the programming or the neurosurgeon? The pulling sensation is more extreme when my medication is wearing off or not working but it also occurs during my "on" time.
