In 2017, Karen English began experiencing pain related to Thoracic Outlet Syndrome (TOS). After nearly a year of medical consultations, she was referred to the Division of Thoracic Surgery to meet with Dean Donahue, MD, the director of the TOS Program.
Artist and educator Rachael Vaters-Carr, 43, has lived with thoracic outlet syndrome (TOS) for several years. TOS is an uncommon disorder that results from compression or irritation of the nerves and/or blood vessels in the base of the neck underneath the collarbone. Rachael came to see Dean Donahue, MD, of the Thoracic Outlet Syndrome Program at Massachusetts General Hospital after having unsuccessful surgeries at other institutions. She describes her experience undergoing two surgeries at Mass General, as well as her collaborative care team and path to recovery.
Q: Why did you choose to come to Mass General for your care?
TOS patients often describe their diagnosis as a journey because it can take years to be diagnosed, and it can be even more challenging to find the proper specialist to treat it. TOS is rare and the various manifestations and complex symptoms are often poorly understood. There are only a handful of true TOS specialists in the United States. Dr. Donahue is a rare individual because he serves as both a diagnostician and surgeon with a keen awareness of the interconnectedness of all the various systems that are impacted in this syndrome. Each patient is unique, and the cascade of symptoms that can come with it can be vascular, neurogenic and sometimes totally unexpected. I had three unsuccessful surgeries at two other institutions prior to coming to Mass General. It was after some complications from my third surgery that I discovered Dr. Donahue through a Facebook support group for thoracic outlet syndrome. It is a closed group for patients diagnosed with TOS. When I joined in 2013, there were just under 400 members. Today there are well over 1,800.
Q: When did you first meet with Dr. Dean Donahue?
I first met with Dr. Donahue in the summer of 2014. I had very little contact with other departments at Mass General at the time, but compared to other institutions I had been to, I immediately knew I was in the right place when I talked with Julie Donahue, nurse coordinator of the TOS Program, over the phone to set up my first appointment. It was clear that she was incredibly informed about TOS and the wide array of complexities associated with it.
It wasn't until I met with Dr. Donahue and was scanned by his team of radiologists that I was given the news that my prior surgeries had been incomplete resections and that I would benefit from a complete cervical and first rib resection. I had one side redone in October of 2014 and the other in May of this year.
In preparation for surgery, what were you told about the process?
I had three surgeries prior to meeting Dr. Donahue. I was already aware of many of the details of the surgery, but was pleased to hear of the thoroughness by which Dr. Donahue goes over details, and the way that he describes the more intricate and complex parts of the procedure. He has the ability to really comprehend some of the less commonly understood symptoms, risks and outcomes associated with the complex care of TOS. His protocol for recovery may be the most realistic that I have encountered. It is a surgery that takes time to heal from, and that is often not calculated or communicated enough.
How did everything go?
My first surgery with Dr. Donahue (fourth TOS surgery) went very well. I still have some nerve pain around the shoulder and surgical site that we are hoping will resolve over time, but the improvement in my endurance, strength and stamina has been incredible. Prior to my first surgery with Dr. Donahue, even after two previous surgical interventions on my left side, I was increasingly fatigued and suffering from cardiovascular endurance issues. The best way to describe it was that if I walked more than a block, it felt like someone had flipped an off-switch on me. I can walk/jog a brisk three miles now. My left hand has become much stronger than my right, which is my dominant side.
My second surgery with Dr. Donahue (fifth TOS surgery), was a bit more challenging. As it was described to me, there was an extensive amount of scar tissue that had built up in my brachial plexus that needed to be cleared. My nerves were not exactly happy afterwards. I am still healing and rehabilitating from this surgery, but it is early and already the swelling in my arm has started to resolve. I am optimistic that over time the nerves will continue to settle down and allow me to get back into my art studio more often.
What happened after surgery?
Post-op went very well. I am fiercely independent, so my goal is to get back to my daily activities as quickly as possible. I think I surprised Dr. Donahue with how well I was doing just a few weeks after my first surgery. Both of my surgeries at Mass General were some of the shortest hospital stays I have had. As each day passes, I feel myself getting stronger, and I continue to make gains since my most recent surgery. Dr. Donahue has been great in helping me to pace myself, as the recovery can take many months and for some patients it can take years for the nerves to fully heal.
How would you describe your care team?
Amazing! There is such a terrific sense of community and collaboration between offices. You can tell there is a lot of respect and admiration for the work that each is doing. I had that same impression with the radiologist who works with Dr. Donahue. There has been a true feeling of compassion and understanding throughout all of my encounters at Mass General right down to the folks who helped put my IV in. We can be tough patients to stick! It is seldom that in the medical community we find people who know what TOS is, let alone have a complete understanding about what we TOS patients go through on a daily basis. I have also been working with Dr. Mihir Kamdar and a team of pain specialists, and occupational therapist Joanna Hollywood. They collaborate with one another, and have generously given their time and attention to my case.
What was your overall experience like?
This experience of TOS is a tough one to relate to. So few people can comprehend a medical journey that spans years and places you in the hands of dozens of specialists. My journey has required that I travel great distances for help and unfortunately has often placed me in the position of being dismissed due to the lack of understanding of the true nature of this syndrome. I am confident that had I met Dr. Donahue first, my TOS journey might have been shorter, and perhaps it may have saved me from having to go through reops. Since I have met him, my medical care finally seems coordinated, consistent, compassionate, informed and truly comprehensive. I am in far better shape than I was prior and I have Dr. Donahue to thank for that. I absolutely trust him with my care.
How has your lifestyle changed since having surgery for TOS at Mass General?
Over the years, I have had to transform due to TOS. Like many TOS patients, we were busy and active members in our lives before we started to have debilitating symptoms. Being a visual artist and educator is my passion, and I have continued to maintain an active studio practice and have taught full-time throughout my TOS journey. It has been challenging, especially with such a physically demanding career, and I am determined to continue to do what I love even now as I am still rehabilitating from my latest surgery. I remind myself daily that I am one of the lucky ones living with TOS. From what I understand, patients that are diagnosed and treated early often have very successful outcomes. Unfortunately, that is not always the case, and there are many others that have been less fortunate in their TOS journey than me and live with far more severely debilitating restrictions.
Living with TOS can be incredibly difficult as it often manifests as a silent chronic pain syndrome intertwined with coexisting symptoms. It is difficult to explain the varied complexities and often misunderstood because on the surface "we look fine" and it is assumed that if you have had surgery you are somehow "fixed.” Surprisingly, I think it took me some time to finally comprehend that the surgery does not change the fact that I have TOS. So in some ways, the greatest lifestyle change has been in the lessons of acceptance, tolerance and endurance of my new sense of normal.
What would you say to someone considering surgery for TOS?
Go to see Dr. Donahue first. There is no one more capable or qualified to carefully consider your case and create a customized treatment plan! I only wish I had known about the TOS Program at Mass General sooner. I truly believe it would have saved me additional surgeries and years of looking for a specialist with answers.