NEW YORK — Maybe you’ve never heard of transverse myelitis, but those diagnosed will assure you it’s devastating. Basically, your body doesn’t have the muscles required to move your hands or fingers. Now, after years of medical dead-ends, a new procedure may solve the riddle outright.
For 15-year-old Nicole, simple things like fixing her hair or painting her nails used to give her the hardest time.
“There were definitely things that were difficult like sports and gym class and stuff,” said Nicole, transverse myelitis patient.
At just five, Nicole was diagnosed with transverse myelitis — a rare nervous system disease. She lost control of all but five muscles in her right hand. Most people have 30 muscles.
“I think the closest analogy is perhaps Polio,” Scott W. Wolfe, M.D., Orthopedic Hand Surgeon at Hospital for Special Surgery in New York said.
Dr. Wolfe spent three months on an answer. The unique solution: matching working, available tendons in her arm to non-working muscles in her palm.
“That gives us the opportunity to take working muscle units from one position in the forearm, and reconnect them in a different place and have those same do a different task.” Dr. Wolfe said.
Surgeons both stabilized Nicole’s thumb and then transferred those tendons at the same time. A muscle that used to straighten Nicole’s wrist is now used to bend her fingers.
“I am definitely really surprised on how it’s working out so quickly,” Nicole said.
Nicole absorbed three month’s worth of physical therapy in just three weeks and is hungry for more. Good news for the 14-hundred people diagnosed with her condition yearly.
“Everything’s just so much easier, I can text quicker. I can even do simple things like hold something in one hand and open a door with the other, Nicole added,”
Now, Nicole can primp, pour and yes, text. It’s simple, yet revolutionary progress.
It will take Nicole two full years of therapy before she gains full strength in her right hand. Oddly, there are no specific causes of transverse myelitis — nor is there any familial pre-disposition. Most often, the condition blossoms after damage to nerve fibers following a viral infection.
New Tendons Restore Hands — Research Summary
BACKGROUND: Transverse myelitis is a rare nervous system disorder caused by an inflammation of the spinal cord. The disease may result in injury across the spinal cord. The segment of the spinal cord where damage occurs determines which parts of the body are affected. The disorder occurs in both children and adults. Usually, people with transverse myelitis experience only one acute episode; however, complications can linger. (SOURCE: www.mayoclinic.com)
SYMPTOMS: Symptoms of transverse myelitis usually develop over a few hours and worsen over the course of a few days. What begins as sudden lower back pain and abnormal feelings in the toes can quickly turn into more serious symptoms including paralysis and an inability to control bowels. Some patients are able to recover from the disorder with only minor injuries, but others may suffer permanent injuries that can affect their everyday living. (SOURCE: www.ninds.nih.gov)
CAUSES: Researchers aren’t sure what causes transverse myelitis but say it often develops after viral infections. It sometimes may occur as a complication of syphilis, measles, and some vaccinations used to fight chickenpox and rabies. An acute, rapidly-progressing form of the disorder may signal the first attack of multiple sclerosis. Bacterial skin infections have also been associated with the condition. (SOURCE: mayoclinic.com)
TREATMENT: As with many disorders of the spinal cord, there is currently no cure for transverse myelitis. Instead, patients may be prescribed anti-inflammatory drugs and medications to help manage symptoms. Most patients experience at least partial recovery. Some patients also participate in physical therapy, occupational therapy and or psychotherapy to help speed up recovery. In some cases, doctors may recommend plasma exchange therapy and intravenous steroids. (SOURCE: myelitis.org) MORE