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ann connor

best stn programming for dystonia

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Have always had "on' dystonia from sinemet.  Although gpi location for my 9/13 dbs surgery was suggested by my neurologist , my neurosurgeon   thought stn was best.  Now programming and meds both provoke shoulder and foot dystonia.  I like both my docs but we are all stymied.  Can you please recommend programming or meds  suggestions for stn  dystonia.  Or tell me there is nothing that can be done.  The neurosurgeon recommended a 2nd gpi surgery which I would like to avoid. 

 

My husband and I heard you speak on dbs at the YOPD Minneapolis conference in 2004.  It was great.  THANK YOU for all that you do for the Parkinson's community.  Finally had DBS 9/13. shows great potential but I am frustrated now.  Hope that you can help. 

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I would probably ask the docs to take a step back; examine the programming; get imaging to check lead location and see if medications and programming (in combination can help).  I would ask the question as to whether the programming at each contact on each device makes sense (side effect versus benefits) and consider it could be lead location.  We see one patient like you from all over the country each week and we follow an algorithm to try to solve the problem; and if we fail we either reposition or consider a different DBS target.

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