Mayo Clinic Connect
I need help with my condition: Spasmodic Torticollis
Welcome to Connect, Oakbourne.
Other members have posted about spasmodic torticollis, also known as cervical dystonia, and other forms of dystonia. You may wish to read and join these discussions.
– Anyone else have cervical dystonia? https://connect.mayoclinic.org/discussion/kaia-hi-kaja-this-is-kevin-kelley-just-read-your-post-on/
– Dystonia – triggers that suppress symptoms of dystonia: https://connect.mayoclinic.org/discussion/dystonia-triggers-that-suppress-symptoms-of-dystonia/
– cervical dystonia: https://connect.mayoclinic.org/discussion/cervical-dystonia/
I’m tagging @cbuss @Kaia, @netfun2011 @kevinkelley @shenaaz @lo @paulm @ycarney @jpoffo @nissa @sweetheartsdance @tmnm @helpinghand @bjmiller, @matttheschmatt @AgentDarien with the hope they will return and share their insights, too.
Oakbourne, how long have you been dealing with the symptoms? Is surgery a possibility for you?
I have Spasmodic Torticollis, oralmandibular problems, can't smile, and I'm a retro left looker. I was diagnosed in 1990, and had the Selective Denervation operation in 2000. I was choking on multiple foods. Dr, Arce performed the operation and I did well until a few years ago. New neuro pathways are involved. Dr. Arce informed me that I'm a complicated case. No more surgery, and NO to Deep Brain Stimulation. I take 4mg of Klonopin in the morning because of pain and stiffness and I walk 9 miles in the afternoon and have nothing to take for the walk. My young doctor does not want to give me a 2 mg Klonopin for my 9 mile walk. She wants me to take Artane, but it makes me shaky. I have never felt normal, even before I was diagnosed. Always shaky, dizzy, and completely out of sorts. I was 37 when diagnosed at the Medical College of GA. I was given way too much Botox, 300 units every 3 months and built up antibodies. I now take Myoblock by this young doctor but it's hit or miss. Dr. Arce wants to do a Genetic Study on my kin folk. Most of my kin have/had essential tremors, oralmandibular shakiness and tightness, and something had to be in their mouth – cigarettes smoking or chewing gum. I was a member of Dystonic Inc., and they were great, but Howard Thiel and his assistant had to shut down the organization. I am lost! I feel comfortable around ST'rs. Where do I go next for support? I enjoy going to ST symposiums. Can you help? Thanks, Dorothy
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