What are the top-ten benefits we expect from DBS? The information in this post assumes the stimulation settings are optimized and electrodes are adequately positioned in the brain.
- Rigidity – muscle stiffness is typically a problem in Parkinson’s and can coincide with muscle pain typically in the shoulder or across the lower back. Stiffness and pain that improves with PD medications should also improve significantly with stimulation. As stimulation power increases, stiffness decreases until the muscle is moving freely and in most cases, pain associated with PD is much improved. If the body has other causes of pain, the pain may or may not improve completely. Dystonia is a common symptom of PD and feels like a tightening or cramping of a muscle and may be more of a problem when medications are wearing off, at peak dose or during exercise. Dystonia typically improves substantially with stimulation.
- Bradykinesia – slowness of movement is almost always a symptom associated with PD. Slow movement can steal away energy, cause problems getting up, rolling over, and getting out of the car or off the toilet. Slowness of walking is more obvious when PD medications are wearing off or too low of a dose. Stimulation improves slowness significantly and the body moves at a pace that is closer to normal.
- Tremor – tremor that occurs when the arm or leg is at rest or when the arm is moving responds well to stimulation. Chin, head, and voice tremor also respond to stimulation but has less predictable response to stimulation than arm or leg tremor. Typically stimulation will reduce tremor by 70% and sometimes more than 90%. The success of stimulation for tremor depends on the characteristic (pattern) of tremor. Stimulation can abruptly stop tremor, however this is considered a side effect if also associated with acute onset of muscle tightening, speech slurring, swallowing problems, facial contortions, blurred vision, walking problems or gait freezing, worsening balance or slowness.
- Shuffling & Posture – these two symptoms are usually related. If PD medications improve shuffling and/or posture, we expect stimulation to improve shuffling and posture. Sometimes these mid-line body symptoms improve only to become a problem later and is important to investigate for overstimulation or too low medication and can be related to symptom progression.
- Speech – if PD medications improve speech, we expect stimulation to improve speech. If speech improves only to become a problem later, we investigate for overstimulation or too low medications and in some cases worsening speech is related to symptom progression.
- Sleep quality – stimulation almost always improves sleep disturbances related to PD. Sleep can be from several causes in some cases. Most importantly, if sleep apnea is a problem, treatment should be discussed with the physician and not discontinued without direction of the physician.
- Medication reduction – if stimulation improves the above symptoms as expected, medications are not usually needed at the doses used before DBS. Once medications are gradually reduced, dyskinesia becomes much less of a problem and may go away completely.
- Fatigue – feeling tired can be related to many factors and should be approached from a comprehensive approach. If fatigue becomes worse after stimulation is turned on, the cause may be related to stimulation settings, medication reduction or a body not quite ready for the increase in activity after DBS. Stamina may be very low before DBS and should be a targeted treatment after DBS in all patients.
- Weight gain – weight gain is not typically abrupt after stimulation is turned on but occurs over the following 12-24 months. Best defense is to increase calories burning activities and muscle mass. In some patients, weight gain is a positive change in the setting of chronic weight loss from Parkinson’s.
- Long-lasting – stimulation keeps working year after year as long as the battery is changed at the appropriate time and the stimulation settings are appropriate. Overstimulation is a large factor in worsening symptoms that can be reversed with a change in stimulation.
The above symptoms should be reviewed in detail prior to DBS surgery. With a good understanding of the person before DBS, troubleshooting stimulation problems becomes challenging and may require a troubleshooting expert to sort out. If the workup prior to DBS is adequate and DBS is offered, the therapy should always work for the symptoms that are responsive to PD medication. There is a risk of worsening cognition and mobility from the implantation of the electrodes. For best results, the therapy should be performed and managed by expert DBS teams.
Sierra Farris is an expert DBS troubleshooter in Denver Colorado. Sierra offers a VIP program for people with poor results from stimulation.