You may be a candidate for DBS for dystonia if your dystonia is disabling, has been correctly diagnosed, and has not been controlled well enough by medications and, for focal forms, botulinum toxin injections. The best candidates have isolated (primary) dystonia, including cervical dystonia, Meige syndrome, segmental and generalized dystonia and DYT1 dystonia, or tardive dystonia.
Candidacy is decided by a multidisciplinary team after a full evaluation. The first step is simple: send a short video and your medical reports for a free remote review. A brain MRI is not required for this first opinion.
Checklist: signs DBS could help you
- Your diagnosis is dystonia, confirmed by a neurologist
- Dystonia limits work, walking, eating, speaking, reading, driving or self-care
- You have tried medications, and for focal dystonia, properly performed botulinum toxin injections
- Injections wear off too quickly, work less than before, or cannot reach the muscles involved
- Your dystonia is isolated (primary), genetic such as DYT1, or tardive
- You are in reasonable general health for surgery under general anesthesia
- You are prepared for gradual improvement and programming visits over several months
Factors that reduce the expected benefit
- Dystonia caused by structural brain damage, such as cerebral palsy, stroke or trauma[1]
- Fixed joint contractures or spine deformities from long-standing dystonia
- Some genetic forms, such as DYT6 (THAP1) speech symptoms or PKAN[2]
- Long disease duration, which is a reason to seek evaluation earlier rather than later[3]
None of these automatically rules out DBS. They change the expected result, and therefore the decision.
Reasons DBS might not be advised
- Dopa-responsive dystonia, which is treated with medication
- Psychogenic (functional) movement disorders, which need a different treatment
- Uncontrolled psychiatric illness or severe cognitive impairment
- Medical conditions that make surgery or anesthesia unsafe
How the evaluation works
- Send your informationA video of your symptoms, your neurology reports, previous treatments and injection history, by WhatsApp or email.
- Remote reviewProf. YILMAZ’s team reviews it and, if suitable, arranges a video consultation.
- In-person evaluationIn Istanbul: neurosurgeon, neurologist, psychologist, cardiologist, anesthesiologist, physiotherapist and nutrition specialist each assess you independently.
- DecisionThe team discusses the result with you and your family and agrees a personal plan.
Frequently asked questions
Am I too old for DBS for dystonia?
There is no fixed age limit. General health and the type of dystonia matter more than age. Younger age at surgery is linked to better results in cervical dystonia,[4] so evaluation should not be delayed.
Do I need an MRI before contacting you?
No. A brain MRI is not required for the first review. If DBS is planned, MRI is done during the evaluation in Istanbul, under general anesthesia.
Can DBS help dystonia caused by cerebral palsy?
It can help some patients, but less than in primary dystonia, about 24% on average in one prospective study.[1] The decision is made individually with realistic goals.
Sources
- Vidailhet M, Yelnik J, Lagrange C, et al. Bilateral pallidal deep brain stimulation for the treatment of patients with dystonia-choreoathetosis cerebral palsy: a prospective pilot study. Lancet Neurol. 2009;8(8):709–717. Source
- Artusi CA, Dwivedi A, Romagnolo A, et al. Differential response to pallidal deep brain stimulation among monogenic dystonias: systematic review and meta-analysis. J Neurol Neurosurg Psychiatry. 2020;91(4):426–433. Source
- Andrews C, Aviles-Olmos I, Hariz M, Foltynie T. Which patients with dystonia benefit from deep brain stimulation? A metaregression of individual patient outcomes. J Neurol Neurosurg Psychiatry. 2010;81(12):1383–1389. Source
- Hua X, Zhang B, Zheng Z, et al. Predictive factors of outcome in cervical dystonia following deep brain stimulation: an individual patient data meta-analysis. J Neurol. 2020;267(6):1780–1792. doi:10.1007/s00415-020-09765-9 Source