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Anyone else have cervical dystonia?

Spine Health | Last Active: Jan 31 12:42pm | Replies (18)

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I realize this post is from awhile ago. My mom is 82 with cervical dystonia and also has unbearable pain. No doctor or treatment has helped. Looking for ideas for pain management.

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Replies to "I realize this post is from awhile ago. My mom is 82 with cervical dystonia and..."

Hello @jenandmom and welcome to Mayo Clinic Connect. I see you wish to help your mother who has cervical dystonia.

Members like @oldkarl and @sadnancy have experience with this topic and may be a good resource for you.

I thought you might find this video on DBS interesting. The video mentions that this can be used to treat Dystonia.

- Deep Brain Stimulation Using Segmented Leads:
https://www.mayoclinic.org/medical-professionals/neurology-neurosurgery/videos/deep-brain-stimulation-precision-using-segmented-leads/VID-20457940?
Also, in case it is beneficial, I've also included some basic information about how Mayo Clinic goes about treatment.

- Cervical Dystonia: Diagnosis & Treatment:
https://www.mayoclinic.org/diseases-conditions/cervical-dystonia/diagnosis-treatment/drc-20354128
What has your mom tried for treatment to date?

@jenandmom I was diagnosed with/CD in 2021 - eerily occurring shortly after receiving the rushed Pfizer Covid vaccination. I tried Botox injections that utilized several different muscle combinations. My body was very sensitive when certain muscles were injected: Scalene caused the left side of my throat to swell/close up; Sternomastoids and Levators (spelling?) caused head-drop (difficult to raise head). I had to take a break from Botox injections July 2024. I was placed on Clonazepam. This medicine did help calm the brain and help me to sleep at night; however, the tremors and neck pain still exist. I cannot lie on the back of my head because this action (as well as the slightest bit of stress) is a trigger for the tremors. My neck, head, shoulders, and back (down the elevator muscles) always feel the strain of tremors. I was just give Carrol’s-Levodopa 25-100 tablets which I take half of, 3x a day. This is mainly used with Parkinson cases. It does calm the brain, but tremors return full force when it wears off (hence the reason for taking 3x/day). I take both C-L and Clonazepam to test efficacy. I have an appointment on January 28, 2026 to discuss both drugs and determine if I should try Botox again. My neurologist is fantastic and very caring. Has referred me to someone in Boston to obtain a second opinion. I’m an anomaly w/regards to my body’s sensitivity to Botox injections. This illness has absolutely changed my life. I had just retired from the workforce and was looking forward to enjoying life further. I keep plugging away, but it definitely upended my plans. I will not entertain Deep Brain Stimulation- it’s my opinion that the medical community has a ways to go in this area. There is another option using ultrasound and laser treatments - it was recently successful for a man who had severe hand tremors. Unfortunately, there is not enough research/clinical trials for cervical dystonia. I’ve read a tremendous amount of research on the Basal Ganglia and the Nervous System. I’ll reply again if I have better results.