We recently heard from former Bloorview School student Osmond Shen, who wanted to share his experience with deep brain stimulation to treat involuntary movements caused by cerebral palsy. "It's made a huge difference in my body," says Osmond, 20, who enjoys playing Nintendo switch games with his brother Edmond, studying with a tutor, and online shopping. Deep brain stimulation is a surgery where thin wires called electrodes are placed into one or both sides of the brain in areas that control movement. The electrodes are connected by extension wires to a battery-operated device, similar to a pacemaker, placed under the skin below the collarbone. A few weeks after surgery, this device is programmed to interrupt the atypical signalling patterns causing movement problems.
BLOOM: What problem were you hoping deep brain stimulation would treat?
Osmond Shen: To decrease my dystonia, or uncontrolled body movements. Before my surgery, my legs were painfully stuck together all the time. Also, my neck was becoming so stiff and stuck to one side, that it was difficult to turn my head back and around. I experienced lots of pain when my muscles were stiff, and, when you go through constant pain during the night, you [don't] have enough sleep.
BLOOM: Had you tried other treatments?
Osmond Shen: Yes. I had been on an intrathecal baclofen pump since 2005. But even though for the last couple of years I've been on a high dose of this medication, my body was still stiff.
BLOOM: Who suggested deep brain stimulation to you?
Osmond Shen: My baclofen pump doctor at Toronto Rehab referred me to a movement disorder clinic at Toronto Western Hospital.
BLOOM: I thought this surgery was always done while the patient was awake, but that wasn't the case for you, right?
Osmond Shen: No. I wasn't awake during my six-hour procedure, because of my uncontrolled movements.
BLOOM: Was the recovery painful?
Osmond Shen: It wasn't painful, but it was very uncomfortable. I had staples on three parts of my body because, in addition to deep brain stimulation, I had my baclofen pump replaced. The staples were itchy and made me so uncomfortable.
BLOOM: What difference did deep brain stimulation make, in terms of how you feel, or what you can do?
Osmond Shen: First of all, I can turn around my neck easily. Also, I have much less pain in my legs. It's made a big difference since it was turned on. My body has been much more relaxed and flexible. Life is much easier for me now.
BLOOM: Many people would be anxious about having this surgery. Did you do anything in advance to try to help you relax?
Osmond Shen: My parents, my physiotherapist, my neurosurgeon and my family friend were all so positive, and on the same page, and kept encouraging me to go for this procedure. My part was doing research about this technology on the Internet.
BLOOM: Is there anything you aren't happy about with the results?
Osmond Shen: I can't be happier than I am today. The results are what I expected, and my doctor said it usually takes about one year to reach its full result, so I still expect more improvements.
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