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Appala

DBS, Hip/leg Pain

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Dr. Okun, I had DBS (STN, bilateral, Vercise study) almost 2 years ago. No tremor since, which is a huge improvement because I had the worst tremor of anyone I know (and I know dozens of Parkies through my active PD groups). However, it has very negatively affected my previously very robust speech & language, and now I also have terrible walking problems due to excruciating pain in my  hips & legs. Pain is chronic, a deep ache but sharper when weight bearing, and is always there to some extent, even when lying down. It seems to be in bone, joint, & muscle & is so bad I can barely walk, have to climb upstairs on all fours. Is it possible this is DBS related & might be  improved with better  programming, or is it more likely spinal stenosis sciatica related? I had stenosis surgery over 3 years ago, but the symptoms seem different. Is this just advancing PD (I was diagnosed 10 years ago), or can anything be done? I'm nearing despair as I am all but lame at this point & having difficulty keeping fit. Is this something that happens eventually with PD? Is that why we  often end up in wheelchairs? Any advice much appreciated. Thank you.

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The speech is commonly associated with DBS surgery (worsening and more worsening with more leads; 2 greater than 1). 

The pain would be uncommon as a DBS manifestation.  You could temporarily and with doctor supervision turn off the devices and see what gets better.

Usually we involve an orthopedist and a neurosurgeon to sort out whether this is bone pain, nerve pain or both and what the options are...

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