Survey and Discussion: Botulinum toxin injections for cervical dystonia

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Patients Dystonia

Survey and Discussion: Botulinum toxin injections for cervical dystonia

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I started Botox injections in July.  Did not alleviate the pain in my neck.  So discouraged I am at a total loss as to what to do next.  Cervical dystonia has totally changed my life, can't do much of anything I have pain 24/7 without any relief.  Lying down helps if I keep my head perfectly still.

Survey and Discussion: Botulinum toxin injections for cervical dystonia

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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.

Survey and Discussion: Botulinum toxin injections for cervical dystonia

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 14 days later....the only effect is right hand and right arm weakness. No effect on dystonic movements. Dr. notified. Next step?????

Survey and Discussion: Botulinum toxin injections for cervical dystonia

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 Has anyone else tried regular massages for your neck and shoulders?

Survey and Discussion: Botulinum toxin injections for cervical dystonia

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@Awatchman‍ what was the doctor's suggestion after learning the botox was unsuccessful on the dystonic movements?

Survey and Discussion: Botulinum toxin injections for cervical dystonia

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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.

Survey and Discussion: Botulinum toxin injections for cervical dystonia

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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.

Survey and Discussion: Botulinum toxin injections for cervical dystonia

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@Awatchman what about biofeedback? It’s worth exploring. Google neurofeedback as well as biofeedback. 

Survey and Discussion: Botulinum toxin injections for cervical dystonia

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Have you tried this or know anyone who has tried this? For the focal dystonia

Survey and Discussion: Botulinum toxin injections for cervical dystonia

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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.