Shana has Ehlers-Danlos Syndrome, a connective tissue disorder that can cause chronic nerve and spine related pain. When Shana awoke from a surgery to treat thoracic outlet syndrome, she immediately noticed numbness in her left forearm and pain that hurt worse than her incisions.

When Shana went home, she was in intense pain, was unable to sleep, and she had a large bruise on her left bicep. Shana was gripping her arm through the pain. When she finally released her arm, she noticed that her left forearm looked different from her right. Her husband also noticed the change.

Shana’s forearm looked contracted and her bicep was bruised and “flopped over” despite the fact that she had always had defined muscles in her arms from years of working out at the gym. Shana scheduled an appointment with pain specialist Dr. Andrew Lobonc at UNC Health. “When I showed him my bicep and my left arm, Dr. Lobonc got very concerned,” recalled Shana.

Shana’s arm was numb, she still had bruising, and she could not get her biceps to engage. Dr. Lobonc was concerned about the inactivity of Shana’s musculocutaneous nerve because it was not moving and not responding. Dr. Lobonc completed trigger injections to help relieve Shana’s pain.

Shana started physical therapy to try and help her bicep. During her first visit, her physical therapist tried testing nerve responses around Shana’s bicep. “She couldn’t find any nerve response at all,” recalled Shana.

Shana started going to the gym and exercising again without weights. When she started to use her arms, her left forearm would compensate for her biceps. After a few months post-surgery, a nerve test confirmed severe nerve damage. During her next appointment with Dr. Lobonc, Shana was told about peripheral nerve surgeon, Dr. Mark Attiah. “Dr. Lobonc told me that UNC had just got a new neurosurgeon and asked if I would like to be referred to him,” said Shana.

At this point, Shana had met with various doctors, dealt with intense pain, and had tried physical therapy and different pain management treatments. She had been given false hope over and over again, and was even told to give up on her nerve.

When Shana saw Dr. Attiah, she knew she had found someone that could help her. “He answered all of my questions and was extremely knowledgeable,” said Shana.

Dr. Attiah recommended further testing to assess the damage. Shana had a neuroma, indicating that the nerve was damaged. Dr. Attiah then explained Shana’s surgical options, including the benefits and risks associated with her options. “He brought out pictures and answered all of my questions to help us understand,” said Shana. “He took as much time as needed for me to completely understand and make a decision.”

Shana went in for surgery. Dr. Attiah planned to go in and map the region and assess the damage, then repair any damaged parts. But during surgery, Dr. Attiah discovered that Shana’s nerve was completely severed, and there was nothing to reconstruct.

After surgery, Dr. Attiah explained that he had to abandon his original surgical plan. Shana required a nerve transfer surgery. “The surgery involves taking portions of healthy nerves and rerouting them to nerves that have damage,” said Dr. Attiah. “Nerve injuries are time sensitive and should be treated as soon as possible. After a year, the nerve will likely not heal.”

Dr. Attiah would perform a procedure that would take two healthy “donor” nerves controlling her wrist and hand and connect them to both the nerve in the biceps and the brachialis muscle. Dr. Attiah explained to Shana that this would put otherwise healthy nerves at risk for temporary or permanent damage.

Shana decided to proceed with the surgery. “Any time I would talk to him, I would have his undivided attention,” said Shana. “He would explain everything to me and allowed me to record things.”

The surgery was extensive. “The part that takes the longest is testing the wires in the nerve,” explained Dr. Attiah. “We use a fine electrical stimulator and touch each wire, causing her hand and wrist to flex and contract during surgery, to make sure that we aren’t cutting something that will damage function permanently.”

Shana stayed in the hospital overnight before being discharged the following day. After discharge, her long road to recovery began.

Patients with severe nerve injuries can take up to two years to heal after surgery, and the success of the surgery is dependent on each patient’s consistency with physical therapy. “Shana is very motivated to get better,” said Dr. Attiah.  “She attends her many therapy appointments and does her exercises.”

Shana wore a sling for seven and a half weeks post-surgery, then worked with physical therapy and a hand therapist to help retrain the nerve. Shana, who is no stranger to surgeries and injuries, described the excruciating recovery process. “I had so much pain in my hand,” said Shana. “The nerve pain was insane. But Dr. Attiah really worked with me and sent me to the appropriate doctors that could help manage my pain.”

Shana needed help with basic day-to-day functions such as dressing, bathing, and cutting her food. Shana also developed complex regional pain syndrome, a disorder that can occur after a nerve injury that can lead to swelling and changes in temperature sensation. Part of Shana’s recovery included seeing pain management specialists for nerve blocks to help manage her pain. She also developed frozen shoulder.

Shana’s nerve test at three months was discouraging because she did not have any response in her bicep. Despite the news, Shana continued with her physical therapy appointments and exercise routine.

On July 3, 2024, Shana was told that she could try to lift her arm. “It was not easy, but I was starting to be able to move,” said Shana. “I was finally able to lift my arm.”

On August 26, 2024, Shana hit another milestone when she was able to do her own hair without having to rely on her husband or friends.

Finally, at Shana’s six-month nerve test, there was a response detected in her biceps. Shortly after, she started developing muscle twitches. The surgery had been a success.

Now, Shana can do a bicep curl at the gym. She has movement in all of her fingers, except for her thumb. She can lift and throw a medicine ball. She attributes a lot of her mobility and success to exercise. “I was going to four to eight doctors a week,” recalled Shana. “I have a long way to go. I’m not lifting much on my left side, but I have something to work with now.”

Her friends at the gym have watched Shana’s journey and saw her tears when she tried to do certain moves with a bicep that would not work. “Throughout this whole process people at the gym would ask me how I am doing,” said Shana. “I would say ‘I am here.’ But for the first time, people are asking me how I’m doing and I’m saying ‘I’m good and I’m getting better.’”

Shana’s fingers are getting stronger, and she has much more mobility and range of motion. Shana goes to physical therapy and occupational therapy and continues to work out regularly. She looks forward to returning to her hobbies and work at her swim school as she continues to heal. “I’ve never seen any doctor do the things that Dr. Attiah has done for me,” said Shana.

 

Written by Makenzie Hardy, Marketing Coordinator, Department of Neurosurgery