Any neurologists on the Dope? (movement disorders and the treatment thereof)

For some twenty-mumble years I’ve lived with essential tremor (bilateral). In 2016, I had Medtronic Deep Brain Stimulation implants placed in my brain (with pulse generators in my chest). In 2022, I got new generators with rechargeable batteries.

My condition has progressed to the point where DBS therapy is only of extremely limited effectiveness (turning them off does make me almost unable to turn them off back on again).

I recently learned about High Intensity Focused Ultrasound therapy that has helped my brother. I’m wondering if it could help me at this point. I understand that it would be irreversible, but if it has any possibility of helping me, I’m willing to try thalamotomy.

TIA

Not a neurologist. But can share the summary review created by the medical AI OpenEvidence that may be helpful for you:

https://www.openevidence.com/ask/ce7cc34b-6884-4e96-a3d3-6b3b2f693795

And its plain language version:

Summary

If your deep brain stimulation (DBS) device is no longer controlling your tremor well, there is another option to consider: a procedure called MRI-guided focused ultrasound thalamotomy. This treatment uses focused sound waves to create a tiny, permanent lesion deep in the brain to calm the tremor. It does not require cutting the skin or placing any hardware.

Losing tremor control over time is a known issue with DBS — it happens in up to about 3 in 10 people, usually because the body gets used to the stimulation or because the condition slowly progresses.

Your clinician will likely want to make sure your current DBS system has been fully optimized first, since this can sometimes restore control without a new procedure:

• Checking that the lead position and programming settings are the best they can be. Newer stimulation methods can sometimes widen the range of relief. However, if your body has truly stopped responding to stimulation (called habituation or tolerance), adjusting the settings further often does not help.

• If the lead itself is not well positioned, repositioning it is another option.

• If your DBS device is still working on one side, focused ultrasound can usually be used safely on the other, untreated side of the brain.

• Using focused ultrasound on the same side as an existing or previously removed DBS lead is more complicated. In one reported case, the DBS system was removed first, and focused ultrasound was then used on that same side. The treatment needed to be adjusted slightly because scar tissue from the earlier lead changed how the brain tissue responded — the target had to be moved about 2 millimeters to get a good result. This shows that treating a side that has already had DBS hardware requires extra care and planning, often using special brain imaging to map the area precisely.

In people having this procedure for the first time (without prior DBS), focused ultrasound typically improves hand tremor by about 40–50%, with benefits often lasting for several years. Whether this same level of improvement applies to someone switching from DBS to focused ultrasound is not yet known, since the evidence for this specific situation comes only from individual case reports, not larger studies.

It’s also important to know that this procedure:

• Treats only one side of the brain, unlike a bilateral DBS system, which can control tremor on both sides.

• Creates a permanent lesion. Unlike DBS, which can be adjusted or turned off, this treatment cannot be reversed or fine-tuned afterward.

The most common side effects are tingling or numbness, and problems with balance or walking. Speech changes can also occur. These effects are often temporary, but some people have lasting, usually mild, effects. Because you may already have some stimulation-related effects on balance or speech from DBS, this is something worth discussing carefully before deciding.

Because the evidence on using focused ultrasound after DBS stops working is still limited to a small number of cases, and because treating a side that already has (or had) DBS hardware is technically more challenging, this decision is best made together with your clinician — after confirming that your current DBS programming has been fully explored — and with a clear understanding that the new treatment would be permanent.