Question: I was recently diagnosed with Parsonage-Turner syndrome following a rotator cuff repair. There's not much information out there. Can you tell me more about it? I'm currently going through weekly steroid infusion treatment. I have pain in my arm and don't have a lot of feeling in my thumb, index and middle finger. Is treatment usually successful?
Answer: Parsonage-Turner syndrome (PTS) is a rare disorder that affects the nerves controlling the shoulder, arm and hand. It usually causes severe pain, weakness and numbness. Nerve inflammation is a hallmark sign of the disorder. The cause of PTS is not clear. In a small number of people, PTS may be the result of a genetic abnormality. Treatment with steroids may be helpful. The amount of time it takes to recover, though, can vary significantly from one person to another.
PTS affects the brachial plexus - the network of nerves that sends signals from your spine to your shoulder, arm and hand. PTS occurs when those nerves become inflamed. Typically, the inflammation causes sudden pain, followed by weakness and numbness. The severity of an attack can range from mild to severe. Some people have symptoms only in the shoulder, while other cases like yours involve the arm and hand, too.
In most cases, it is not possible to identify the cause of Parsonage-Turner syndrome. But attacks are often triggered by surgery, as well as labor and delivery in women. Influenza, high levels of stress, or extreme use of a shoulder or arm also may lead to an attack of Parsonage-Turner syndrome.
A speedy and accurate diagnosis of this disorder is critical. Because they often appear after surgery, symptoms of PTS are often mistakenly blamed on a surgical injury. But where an injury is usually obvious from the time a person wakes up from surgery, PTS symptoms typically develop hours or days later.
Diagnosing PTS involves an evaluation to establish the presence and location of a patchy process consistent with nerve inflammation. This may include nerve tests, such as nerve conductions and electromyography (EMG), along with imaging exams, such as magnetic resonance imaging, blood tests for alternative causes of inflammation and rarely nerve biopsies. Because PTS is rare and complex, if a primary care physician suspects it, referral to a neurologist experienced in diagnosing and managing the disorder is usually the best course of action.
If symptoms are still active when the diagnosis is made, steroid treatment may be recommended to reduce the inflammation. PTS symptoms usually fade over time. Physical therapy may be necessary to regain complete range of motion. Recovery time depends on the severity of the attack, the areas of the body affected, and how quickly treatment began.
For example, in a case with mild symptoms only affecting the shoulder that was quickly diagnosed and treated, recovery could take six months. For a more severe case that involves the shoulder, arm and hand, full recovery may take several years or more. Eventually, though, most people do recover to near-normal function after a PTS attack.
Research has shown that for some people with PTS, the disorder is the result of a problem in their genes. The genetic form of PTS is rare. But if you have recurrent attacks, if your first attack happened when you were in your 20s or younger, or if it occurred after labor and delivery, consider meeting with a genetic counselor to discuss whether you should undergo genetic testing for PTS.
For those who do have genetic PTS, some research has shown that receiving steroids during a surgical procedure or during labor and delivery can help lessen the likelihood of a PTS attack.
(Medical Edge from Mayo Clinic is an educational resource and doesn't replace regular medical care. To submit a question, write to: firstname.lastname@example.org. For health information, visit www.mayoclinic.com.)