My brother has dystonia at 27. Will DBS or Botox help him?

Question

Hello doctor,

My 27-year-old brother has been having involuntary twisting movements in his neck and sometimes his eyelids twitch uncontrollably. The neurologist mentioned dystonia, but we are confused about what causes it. MRI brain was normal, and routine bloodwork, including electrolytes, came back within normal range.

We are also worried about his mental health and concerned about a few things, like-

Is it usually genetic, or can medications or environmental factors cause this?
And is it progressive or can it stay mild?
We are concerned because it seems to be getting worse. Can you guide us on current treatment options, like whether Botox is safe long-term, and when doctors consider deep-brain stimulation?

Kindly suggest.

Answer 1

Hello,

Welcome to icliniq.com.

I understand your concern.

Your brother’s symptoms, like twisting neck movements and eyelid twitching, are consistent with dystonia, which is a neurological movement disorder characterized by involuntary muscle contractions that cause abnormal postures or repetitive movements. Dystonia can arise from a variety of causes.

In many cases, it is idiopathic, meaning no clear cause is found, but it can also be genetic or secondary to factors like certain medications, particularly dopamine blocking drugs, brain injury, or other neurological conditions. The fact that his MRI (magnetic resonance imaging) and laboratory reports are normal is reassuring, but genetic testing may be considered if there is a family history or the symptoms started at a young age.

Dystonia can vary in severity; some people have mild, stable symptoms while others experience progression over time. Treatment typically includes:

It starts with botulinum toxin (Botox) injections, which are effective and generally safe for long-term use, especially for focal dystonias like cervical dystonia or blepharospasm.
These injections help relax the overactive muscles and reduce symptoms.
If symptoms become generalized or disabling and do not respond well to medication or injections, deep-brain stimulation (DBS) may be considered, especially for primary dystonia.
DBS involves implanting electrodes into specific brain areas and has shown good results in select cases.

It is also important to address your brother’s mental health, as living with a chronic movement disorder can increase the risk of anxiety and depression.

I hope this helps.

Feel free to reach out at any time. I am always here to help.

Thank you.