Survey and Discussion: Botulinum toxin injections for cervical dystonia
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We want to know about your experience with botulinum toxin injections. Have you used them to treat your cervical dystonia Did you find them effective?
We are launching a survey all about the patient's experience with this treatment so don't hesitate to get your voice hear and advance medical research!
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I go to physical therapy twice weekly and it’s been worth every minute/dollar. Here’s the “regimen”.
moist heat for 10 min....Physical Therapist then does about 10 minutes of Myofascia Release on my head and neck , following that, Massage for my neck, shoulders and trapezoid muscles and then some time in the gym to work on my balance.
The massage really does wonders and I walk out without neck pain that lasts for two or three days...and then I go back! I don’t see terminating any part of PT for a long time, if ever.
No Botox for me.
14 days later....the only effect is right hand and right arm weakness. No effect on dystonic movements. Dr. notified. Next step?????
Has anyone else tried regular massages for your neck and shoulders?
@Awatchman what was the doctor's suggestion after learning the botox was unsuccessful on the dystonic movements?
The only suggestion he could give me was an anticholinergic. But this has a side effect of short-term memory loss. That will not work for me in my line of work. Back to the drawing board. Looks like brain and hand training for me, which I will do myself with the help of the Lord.
I am sorry to hear that @Awatchman... I would be curious to see about others possible success with natural or alternative treatments such as acupuncture/dry needling.
@Awatchman what about biofeedback? It’s worth exploring. Google neurofeedback as well as biofeedback.
Have you tried this or know anyone who has tried this? For the focal dystonia
I tried it and it helped. It helped me slow my nervous system down thru my breath, become more aware of stressors quickly and those two things alone help a ton. When I feel neck spasms/head tremors coming on I can usually control it to the point of stopping the spasms by focusing on my breath for a few minutes.
@gladys916 I think there are different doses of botox they can give u they start out slow and it definately takes at least 3 weeks before they start working I get 4 shots in my neck and by week 4 it is like night and day as far as the pain.
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