Sharing My Journey with DBS, Dystonia and Life
Since running the non profit organization, www.care4dystonia.org, I’ve decided to begin writing periodic blogs for patients and families contemplating the procedure, Deep Brain Stimulation ( DBS ) for the control of their movement disorder. There are ” ups and downs ” to the procedure that neurosurgeons don’t clearly tell you about, the risk of complications and issues with programming. DBS is not a cure , only a patch or bandaid for the control of symptoms. One is not guaranteed immediate success, or even long term success for that matter. Regarding dystonia - there is limited outcomes data of what works best as dystonia has always followed a ” trail and error ” treatment approach by neurologists. Life changes after DBS- for some , it changes for the better; for others time is required to see an improvement. There are emotional , social and physical effects that one has to learn when dealing with DBS. As a practicing RN and Nurse Practitioner I will try to share as much as I can to my blog readers to minimize any over-expectations and disappointments ( Been there and done that ! ) I’ll add on scenarios about my travels across the world ( Saggitarians never stay in one place ! ) and other things about Life. Beka, RN, ANP
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