Tourette Syndrome and Deep Brain Stimulation

DBS (Deep Brain Stimulation)  was approved by the FDA for Parkinson's Disease in 2002, and for the treatment of Dystonia in April 2003. DBS for Tourette Syndrome is not a new concept, and has been studied for years in other countries such as the Netherlands, The UK, and The United States. To date; however, DBS has not been approved by the FDA for the treatment of TS. Nevertheless, DBS continues to be used in select cases of TS, despite the lack of clinical findings that substantiate its' effectiveness. DBS is a surgical treatment in which a device called a neurostimulator delivers tiny electrical signals via implanted electrodes to the areas of the brain that control movement. The DBS system consists of three parts:

A thin, insulated wire called a lead, or electrode that is placed into the brain

The neurostimulator, similar to a heart pacemaker, which is usually placed under the skin near the collarbone, but may be placed elsewhere in the body

Another thin insulated wire called an extension that connects the lead to the neurostimulator

The only differentiation between DBS for Tourette's and for other movement disorders is the placement of the electrodes deep within the brains structures. For the treatment of Parkinson's and Dystonia the "target area" for the electrodes is a structure called the Globus Pallidus, and for the treatment of TS the location that is targeted is referred to as the Subthalmic Nucleus.

                                                    During Surgery

Post Operative Picture

In late 2005 I became interested in DBS for the treatment of my Tourette's, primarily because all conventional treatment options had failed. In early 2006 I located a Neurosurgeon that was willing to perform the procedure on me, and after several months of psychological testing I was scheduled for surgery on May 30th, 2006. Prior to the date arriving I was contacted by a media firm from the UK, and was asked if I would participate in a documentary about DBS for Tourette Syndrome that would be aired on the BBC, The Discovery Channel, and The Learning Channel. I enthusiastically agreed, and had the procedure according to schedule while being filmed for said documentary: DBS Procedure Animation
Although the surgical procedure had many risks such as intercranial bleeding, infection, electrode migration, and stroke just to name a few, I went through it with "flying colors".
       Approximately one month  after the procedure I returned to my Neurosurgeon to have the devices activated. The delay between the procedure and device activation allowed any "swelling" within my brain to subside, thereby assuring that my brain had returned to status quo. During this visit a Neuromodulation Specialist made fine adjustments to the computers (Internal Pulse Generators) implanted within my chest, as I provided feedback in relation to the "adjustments". I immediately noticed that despite the activation of the devices, I noticed little to no improvement in my TS Symptoms. It was explained to me in great detail before the surgery that it was an experimental procedure, and one of the risks was a lack of improvement in my condition.
      After many return visits to have these "adjustments" performed, there continues to be no change in my symptoms. After having gone through this highly invasive surgery and never noticing any postive changes, I have became increasingly frustrated to say the very least. I continue to see my Neurosurgeon to date in hopes that each visit will be the one that helps, but after 4 years of having done so, I have become very doubtful as to hope that I will ever see any benefits from my efforts.
      To sum it all up: I had the surgery as a "last ditch effort" in hopes of diminishing my tics and vocalizations because all other options had failed. But I have to be realistic in those hopes and realize that DBS is not a viable option for the treatment of TS, at least not in my case anyway. Maybe in the future; however, continuing research may reveal a better "target" area for the electrode placement, which may provide some relief for Tourette Sufferers. But I don't feel all has been lost. At the very least I have helped the medical community in its' ongoing attempts to control ailments like Tourette Syndrome. I am very fortunate; however, that my efforts did not lead to long term complications that would make TS pale in comparison.