HomeAnswersNeurologycervical dystoniaI have cervical dystonia, and Botox treatments are not working for me. Can you please help?

What are the treatment options for cervical dystonia?

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The following is an actual conversation between an iCliniq user and a doctor that has been reviewed and published as a Premium Q&A.

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Published At April 29, 2022
Reviewed AtApril 10, 2023

Patient's Query

Hello doctor,

I am a 46-year-old mechanic. I have always had high blood pressure, which I maintain with medication daily. I drink occasionally, and I do not smoke. I had never had any severe or chronic illnesses in my life. Four months ago, I woke up with a stiff neck that went away a few days later and turned into a neck spasm. My neck involuntarily will turn to the right all day until I sleep. I went to my primary care doctor, and he said it should go away and it is nothing to worry about. The spasm got worse, so I went to a recommended private doctor out of my city, and they said they had never seen this type of issue before and gave me two different muscle relaxers. After a few days, it did not work. I then went to a neurologist in my city who told me I had cervical dystonia and told me I needed Botox and prescribed me two muscle relaxers. They never followed up with me after my appointment a week later, and the medications did not work. So I then went to another neurologist in my city who also told me I have cervical dystonia, and they would like me to get an MRI of the head and neck and blood work done. I was injected with 200 units of Botox and was prescribed new muscle relaxants. After a week, the medication and Botox did not work. The results from my neck MRI stated I have two bulging disks in my neck, C4-C5, and C5-C6. My neurologist said it is nothing to worry about and was surprised when the Botox and medication did not work. The head MRI came back clear. My blood work stated that a few levels were high by 0.5 or a point (due to infection), but I was told not to worry about it since it is not alarming. I then went to a neurologist in the city because I needed an answer, and they gave me another 200 units of Botox and new muscle relaxants. They also said I had cervical dystonia but were still unsure and documented my case by video. Around this time, I experienced numbness in my right pinky and ring finger and the side of my hand, which is all connected to the right side of my neck spasm. A week later, and now I had 400 units of Botox that did not work and muscle relaxants that were not working as well. I went to physical therapy and was told I could not be helped. I went to acupuncture twice, which didn’t work. I got a nerve test done, which stated that I have a pinched nerve in my elbow and a pinched nerve in my neck on the right side of C6-C7 and at the end of my cervical spine as well. Not one doctor or neurologist has a solution for me, and I am losing hope. If you can help me with what is wrong or have any questions, please let me know, doctor.

Hello,

Welcome to icliniq.com.

I understand your concern. There is no doubt about the diagnosis and the treatment. Not responding to Botox (Botulinum Toxin) can be because of several reasons, including inadequate dose, inappropriate muscle selection, concurrent drug therapy, or a change in the disease state. You need to confirm the above from the neurologist who injected Botox. Second-line therapies are Clonazepam, Lorazepam, Tetrabenazine, and Baclofen. In the end, surgical therapies these days are very effective, including deep brain stimulation. Please do not lose hope, and you should visit a movement disorder specialist.

Same symptoms don't mean you have the same problem. Consult a doctor now!

Dr. Gursimran Singh
Dr. Gursimran Singh

Neurology

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