Dystonia Issues and Deep Brain Stimulation

Posted by kca88 @kca88, Jun 9 4:18pm

Hi,
I really didn’t see a group that addressed dystonia and the issues it causes, My dystonia effects my eyes through blephrospasms, my neck (which pulls relentlessly to the right) and other facial muscles which take some concentration on my part to stay as normal as possible. With all this lumped together it is both physically and mentally exhausting to maintain as normal a life as possible. I have been treated with two medications and Botox with limited effect. The next step will be deep brain stimulation which will require some surgery to put everything in place to stimulate the brain in several areas to reduce the symptoms as much as possible. I just wondered if anyone has been through this procedure and what type of results and side effects have you experienced.
Thank you!

@kca88, welcome to Mayo Clinic Connect. I added deep brain stimulation (DMS) to the title of the discussion you started since your questions are specifically about this treatment option and if other might have experiences to share. You might also be interested in this discussion where you'll meet fellow members like @shenaaz @oakbourne @Kaia @matttheschmatt @sadnancy and @tdonoho

– Anyone dealing with Dystonia? https://connect.mayoclinic.org/discussion/anyone-dealing-with-dystonia/

Back to DBS. You might be interested in this video
– Deep brain stimulation: Precision using segmented leads https://www.mayoclinic.org/medical-professionals/neurology-neurosurgery/videos/deep-brain-stimulation-precision-using-segmented-leads/VID-20457940
Mark K. Lyons, M.D., a neurosurgeon at Mayo Clinic in Phoenix/Scottsdale, Arizona, describes the use of deep brain stimulation (DBS) as well as the latest advancements, including the use of segmented leads for more precision.

What questions or concerns do you have about DBS? I'm sure there are many.

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I can't speak to DBS. However, I do have abdominal dystonia vs camptocormia. I got my first Botox treatment 2 days ago. I have had no side effects from the Botox but my muscles were very sore the day after treatment. I felt like I had done 100 sit-ups. The doctor told me it takes 3 weeks for the Botox to kick in but I might feel some benefit is 3 or 4 days.

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Thank you for the insight, I'm scheduled for Botox shots at the end of the month.

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Hi, I've lived with Spasmodic Torticollis nearly all my born years. I know more about my disease than many movement disorder neurologists.I went to the best – Dr. Carlos Arce. I've attended many symposiums when Howard Thiel got the ball rolling with Spasmodic Torticollis. I know things that neurologist don't have a clue. I am not a candidate for Deep Brain Stimulation. Did you know that ST is a sensory disease? Yes!

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@sadnancy

I can't speak to DBS. However, I do have abdominal dystonia vs camptocormia. I got my first Botox treatment 2 days ago. I have had no side effects from the Botox but my muscles were very sore the day after treatment. I felt like I had done 100 sit-ups. The doctor told me it takes 3 weeks for the Botox to kick in but I might feel some benefit is 3 or 4 days.

Jump to this post

Hello @sadnancy,

As it has been over 10 days since your Botox treatment I was wondering if you have noticed any changes yet? I'm assuming that the Botox injection was in the abdomen wall?

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YES! Yesterday I noticed that I could stand erect for more minutes and not get out of breath. The abs tighten somewhat but I can breathe. Maybe after time or another dose, special exercises will be able to help me stay erect. Or maybe Botox will correct everything.

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