I must have been absent from medical school the day we learned about dystonia because there is a big blank space in my memory where any knowledge of that disorder should be. I didn’t know anything about it until two decades after medical school when my Mary, my dear friend and college suitemate, called to say she was in Houston for a new neurosurgical procedure to treat a problem that had completely disabled her. The day I met Mar y and her husband for lunch in Houston (where they were preparing for the procedure) I was stunned at the change in her. Once so vivacious, she looked like she had a terminal illness – and indeed – I am not sure she would have survived much longer if Deep Brain Stimulation (DBS) had not worked for her. Thanks to DBS, she got her life back. You can see in her photo the way her personality shines! Mary has given me permission to share a Medtronic sponsored video about her journey in hopes that the information might reach as many people as possible.
I don’t have any relationship with Medtronic. I just want to provide information that might help anyone with this rare, awful and potentially treatable condition. Pass this on if you know of any friends who need help with a movement disorder. And remember, you can’t control what happens to you in life. You can only control how you react to it.
Caroline
To my DEAR friends, family, medical community, and all the others who help me stay healthy:
In December 2025, Medtronic won FDA approval to reach an expanded horizon of those with Dystonia, hence I was chosen to be their “USA Ambassador.” Medtronic just released this 4-minute video of me hoping I can help others with Dystonia to seek DBS.
My journey with dystonia began with severe pain and loss of mobility. Despite trying physical therapy and Botox treatments, my condition worsened, and I eventually learned about DBS. Medtronic pioneered the world’s first system, Deep Brain Stimulation, to treat patients with movement disorders. In December of 2006, I had two electrodes implanted into my deep brain. My Houston neurosurgeon, Dr Richard Simpson (now retired), performed this life-altering surgery, promising to “stop my brain from squealing”, and saved my life. Today, I am grateful for the medical professionals and Medtronic representatives who supported me. I am able to walk, work, and live independently again. I am now so happy to “pay it forward” serving as the interface between a potential patient, their neurologist, and their Medtronic representative. Sharing my story as an ambassador is important to me, so others considering DBS can hear firsthand what the journey is like. Thank you for passing this along!
Mary
Dr. Fife is a world renowned wound care physician dedicated to improving patient outcomes through quality driven care. Please visit my blog at CarolineFifeMD.com and my Youtube channel at https://www.youtube.com/c/carolinefifemd/videos
The opinions, comments, and content expressed or implied in my statements are solely my own and do not necessarily reflect the position or views of Intellicure or any of the boards on which I serve.
