Kerri Smart describes her family's journey with Thoracic Outlet Syndrome (TOS) and their treatment experience with Dr. Dean Donahue, director of the TOS Program in the Division of Thoracic Surgery at Massachusetts General Hospital.
Since childhood, Karen English, 50, has experienced a range of symptoms related to Thoracic Outlet Syndrome (TOS), a disorder that results from compression or irritation of the nerves and/or blood vessels at the base of the neck and front of the chest underneath the collarbone.
However, it wasn’t until 2017 that new symptoms transpired and quickly progressed. Having grown accustomed to consistent neck and back pain typical with a travel-intensive career such as hers (corporate employee benefits and risk management consultant), Karen knew that this pain was out of the ordinary.
After nearly a year of medical consultations with her longtime primary care physician and chiropractor, she was referred to Massachusetts General Hospital’s Division of Thoracic Surgery to meet with Dean Donahue, MD, the director of the TOS Program.
A New Type of Pain
For as long as she can remember, Karen has maintained a variety of activities to sustain her physical wellness. Physical therapy, appointments with the chiropractor, massage therapy and physical activity had all been part of her regular routine long before her diagnosis of TOS. At first, these visits and activities allowed her to manage minor back and neck pain, but Karen recalls when her “normal” pain transformed into something much more excruciating.
It began with headaches much stronger than she was accustomed to, which became migraines. “I had just had a root canal a couple of weeks prior to my first migraine and thought perhaps they’d hit a nerve,” Karen recalls. “I remember also consulting with my optometrist about my new eyeglass prescription, wondering if this was the potential cause.”
The new pain quickly moved through her body. Karen made the decision to schedule an appointment with her primary care physician (PCP) once she began to feel an unpleasant tingling sensation in her arms and down her back. This tingling, known as paresthesia, is a common exacerbated symptom associated with neurogenic TOS and often progresses into something that is functionally disabling.
For the next year, Karen’s life became a blur of “tiring and frustrating” medical appointments that led to very little discovery as to what was causing the symptoms. While her massage therapist and chiropractor gave her some momentary relief, her pain was unrelenting. She recalls one particular moment during a routine massage when she lost feeling in half of her body. She remembers the pain being so intense that she felt both startled and frightened.
“I went back to my chiropractor in tears because at that point I couldn’t even lift my left arm,” Karen said. “They thought it might be frozen shoulder,” a condition characterized by stiffness and pain in the shoulder joint. Karen, however, did not think this was the case.
Grateful for the Diagnosis
It wasn’t long before she was completely unable to move her arm. Both her PCP and chiropractor referred her to Dr. Donahue, the director of the TOS Program at Mass General and an internationally-recognized expert in the field. Once Dr. Donahue assessed her symptoms and confirmed the diagnosis, Karen was quickly prepped for the various tests and ultimate surgeries that would resolve her condition.
One particular element of her care at Mass General that Karen was pleasantly surprised by was the well-rounded team that attended to every aspect of her condition. TOS is a lot to overcome and requires tremendous support, from surgery to pain management. Karen’s multidisciplinary team at Mass General consisted of:
Karen describes her experience with Dr. Donahue and her care team: “I cannot say enough how lucky I feel to have been under the care of this team. They were absolutely phenomenal, and I feel grateful every day that they have been able to help me feel so much better.”
The Mass General Experience
She recalls Dr. Donahue informing her of exactly what she could expect to feel after her surgery and easing her anxiety before she was put under anesthesia. Dr. Brenner also made a point of stopping by, before and after her surgeries, to check in.
“Before my surgery, Dr. Donahue said something to me that carried a lot of weight for me, both then and now,” Karen said. “He said, ‘I can’t promise that I will solve all of your problems. But I can promise that I will take very good care of you.’"
In the days following her surgery, Dr. Donahue and the team were attentive in observing her progress. Her return home was difficult and painful–an aftereffect that Dr. Donahue had warned her could be part of the healing process.
If there is one thing that Karen would say about Mass General to someone who is considering the hospital, it is that they will be in very good hands.
“I definitely felt I was at a best-in-class facility and that I received the best care possible,” she said. “The TOS Program that Dr. Donahue has established is incredible. From everything I've read and experienced, he is the best and knows how to take on a difficult condition and transform a person back to their best self.”
Recovery Since the Surgery
Since her surgeries, Karen says that she continues to feel better every day, with the severe symptoms she experienced prior to her diagnosis having disappeared completely. As someone who enjoys a physically active lifestyle, she is thrilled to be able to return to her favorite hobbies with her family, including running, hiking, traveling and generally making the most of their time together.
“I can’t even compare how I feel today with how I felt a year ago,” Karen said. “I just hope that my story will help others find the strength to keep trying and ultimately gain resolution faster through the great team at Mass General like I did!”