Cervical dystonia is treated first with botulinum toxin injections into the overactive neck muscles, combined with physiotherapy; when injections no longer give adequate relief, deep brain stimulation (DBS) is the most effective next step. DBS works from the brain, so it treats all the involved muscles at once, including deep ones that are hard to inject, and it does not wear off between sessions.
In a randomized, sham-controlled trial of 62 patients, pallidal DBS gave significantly more improvement than sham stimulation.[1] Across 208 published patients, the TWSTRS score improved by 58.8% on average, disability by 61.3% and pain by 46.6%, and 89% of patients responded.[2] Prof. Atilla YILMAZ, MD performs DBS for cervical dystonia in Istanbul for patients from more than 60 countries.
Step 1: botulinum toxin and physiotherapy
Botulinum toxin, injected every few months into the muscles pulling the head, is the first-line treatment with Level A evidence.[3] Physiotherapy helps with posture, strength of the opposing muscles and pain. Many patients do well with this for years.
Why injections stop working for some patients
- The pattern is complex (for example anterocollis, or a lateral shift) and the key muscles are deep
- The effect wears off weeks before the next injection is allowed
- The response becomes weaker over time
- Head tremor, shoulder elevation or spread to the arm or face adds new muscles
Step 2: deep brain stimulation for cervical dystonia
DBS is considered when cervical dystonia remains disabling despite well-performed injections. Electrodes are placed in the globus pallidus internus (GPi) or the subthalamic nucleus (STN) on both sides. In the individual patient data meta-analysis, GPi and STN gave similar improvement (58.1% vs 47.5%, not significantly different).[4]
What improves after DBS
- Head posture: severity improved 53.9% on average[2]
- Daily function: disability improved 61.3%[2]
- Pain: improved 46.6%, often the first change patients notice[2]
- Dystonic head tremor, which often settles quickly
What predicts the best result?
In the individual patient data analysis, younger age at surgery was the strongest predictor of more improvement.[4] Patients who have struggled with failing injections for many years should not wait until fixed postures or neck arthritis develop.
What to expect: the timeline
- Remote evaluationSend a video of your neck posture, your reports and your injection history. We reply with a first opinion.
- In-person evaluation in IstanbulNeurology, neurosurgery, psychology and anesthesia assessments, MRI under general anesthesia.
- SurgeryBoth electrodes and the stimulator are implanted under general anesthesia.
- First programmingStimulation is started after surgery and adjusted daily during your stay.
- Gradual improvementPain and tremor often ease first; posture improves over weeks to months. Settings are refined in person or remotely.
Our cervical dystonia patients
In our own case series, patients treated with DBS for cervical dystonia, Meige syndrome and myoclonus-dystonia have shown more than 90% improvement in their symptoms, based on clinical assessment and documented on video. Individual results vary. All patients gave written consent for their videos to be published. Results vary from patient to patient.
Frequently asked questions
How long does DBS take to help cervical dystonia?
Pain and head tremor often improve within the first weeks. Posture improves more gradually, typically over 3 to 12 months, as settings are adjusted.
Will I still need botulinum toxin after DBS?
Many patients need fewer injections or none. Some keep occasional injections for a residual muscle.
Is GPi or STN better for cervical dystonia?
Published results are similar.[4] The target is chosen individually.
Can DBS help retrocollis or anterocollis?
Yes. DBS treats the pattern from the brain, so deep muscles responsible for forward or backward pull are included. These complex patterns are a common reason patients come for DBS.
How long will I stay in Istanbul?
The standard program is 18 days (6 in hospital, 12 in a hotel); a shorter program of about 10–14 days is possible for some patients. See international patients.
Sources
- Volkmann J, Mueller J, Deuschl G, et al. Pallidal neurostimulation in patients with medication-refractory cervical dystonia: a randomised, sham-controlled trial. Lancet Neurol. 2014;13(9):875–884. Source
- Tsuboi T, Wong JK, Almeida L, et al. A pooled meta-analysis of GPi and STN deep brain stimulation outcomes for cervical dystonia. J Neurol. 2020;267(5):1278–1290. doi:10.1007/s00415-020-09703-9 Source
- Simpson DM, Hallett M, Ashman EJ, et al. Practice guideline update summary: Botulinum neurotoxin for the treatment of blepharospasm, cervical dystonia, adult spasticity, and headache. Neurology. 2016;86(19):1818–1826. 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