The Brachial Plexus Palsy Clinic helps kids regain function from a condition once thought to be untreatable.
For almost all parents who find Dr. Raymond Tse (whether through referral, by word of mouth or online), the appointment is a last-ditch effort to see if something can be done to treat their child’s brachial plexus palsy. It’s a condition in which the nerves that run from the spinal column to the armpit are unable to send signals to some or all of the muscles that power the arm and hand.
“The old guard may say ‘there’s nothing we can do for brachial plexus palsies,’ but things have changed,” he says.
Tse is one of a new generation of reconstructive surgeons who repairs these damaged nerves. He was recruited to Children’s in 2009 to lead the first — and only — multidisciplinary brachial plexus program in the Pacific Northwest featuring an integrated clinical pathway with a standard assessment process.
“Before we started the clinic in this region, nothing was done for kids with brachial plexus injuries,” says Tse. “They just went through life with no hand function and extremely poor elbow and shoulder function. With treatment, the difference is remarkable and parents are ecstatic.”
New treatment options for the region
Most brachial plexus problems occur at birth, though accidents can cause brachial plexus injuries in children and adults.
About 70% of babies with brachial plexus palsy recover on their own. But when the problem is persistent or severe, the brachial plexus team offers a range of treatments — from therapy to surgery — to restore as much function as possible to the arm.
“It’s important for us to see babies early so we have a chance to follow along and watch their progress,” says Tse. “We look for specific benchmarks at 1, 3, 6 and 9 months of age to assess whether the babies are recovering adequately on their own.”
During this time, babies begin nonsurgical treatment, including physical therapy, to keep limbs limber. If a patient doesn’t hit the benchmarks, Tse steps in to surgically repair the damaged nerves.
Marathon surgeries with tiny tools
In marathon surgeries that often last 12 to 14 hours, Tse and the two other surgeons on his team use microscopes and tiny instruments to repair intricate human electrical systems.
“Nerves run in bundles through channels in the body — sort of like telephone cables with lots of wires inside,” Tse explains. “As long as a nerve has a good channel to grow though, it will keep growing until it hits the muscle. But when a channel is scarred and the nerve can’t get through, it stops growing.”
To repair scarred nerves, Tse performs a “nerve graft,” a procedure that involves removing the scarred piece of the brachial plexus and replacing it with nerves from another part of the body.
“Once we’ve done the surgery, we wait to see what happens,” he says. “A nerve grows at about an inch per month, which means we start to see improvements about six months after surgery, and they continue for the next two to three years.” How much function is restored depends, in part, on how much function the arm had to begin with.
When the damage is more severe — like when nerves ar e forcibly torn from the spinal cord — Tse performs a very new type of surgery called “nerve transfer.” In these cases, he redirects functioning nerves from elsewhere on the spinal column into the brachial plexus.
In 2010, Tse performed a successful nerve transfer to the triceps of a 9-year-old boy — a procedure that had been done only a few times before in the world.
Unique occupational therapy sessions
Last spring, occupational therapist Heidi Allen had a brainstorm. She was working with a number of girls between the ages of 6 and 14 when she realized that they all shared common ground but had never met anyone else with brachial plexus palsy.
So in summer 2011, Allen brought the girls together for weekly, three-hour-long occupational therapy sessions structured like day camp. The girls swam, cooked, jumped rope, learned yoga, went to the park and got to know each other.
“The girls were very open with each other and discussed how they felt about having arms that don’t always work like other people’s arms,” recalls Allen. “During the sessions, the girls would notice someone in the group who had mastered doing something challenging, and then they would all try out the new way.”
The group also talked about some non-physical challenges of living with brachial plexus palsy — like what to say when someone asks what’s wrong with their arm.
Watching the girls learn from each other was inspiring, says Allen, who is already making plans for another occupational therapy group. This time, she plans to include boys in the mix.
Reflecting on the clinic he’s built, Tse says, “I’m lucky to do this work with so many talented clinicians. My team is on par with the best in the world.”
"The old guard may say 'there's nothing we can do for brachial plexus palsies,' but things have changed." ~Dr. Raymond Tse