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Thoracic Outlet Syndrome Patient Success Stories

Patient Success Stories

Thoracic Outlet Syndrome (TOS) is a group of rare conditions involving compression of the nerves or blood vessels that serve the arm and hand, as they pass through the base of the neck and behind the collarbone on the way to the arm. Patients with nerve compression caused by TOS can experience disabling pain.Our Center for Thoracic Outlet Syndrome provides hope to patients with TOS. Read their inspiring stories.

Ben Conners – Swimmer, Outdoor Enthusiast, TOS Success Story

A blood clot in his arm sent Ben Conners to his doctor in November 2012. The exam revealed compression of the vein just under his clavicle, known as Venous Thoracic Outlet Syndrome (TOS). Ben’s body architecture provided a narrower-than-average space for his vein, plus he’d bulked up his muscles swimming, leading to more compression. His blood flow was squeezed, causing clotting. After tests, surgery appeared to be the best option.

Ben and his dad did some research and discovered that Dr. Stephen Annest of the Vascular Institute of the Rockies and Presbyterian/St. Luke’s Medical Center is one of the nation’s top vascular surgeons, recognized for pioneering work on TOS. Ben’s call to the Institute led to a next-day appointment and, after preliminary testing, surgery was scheduled the next week.

“Without the surgery, Dr. Annest told me I’d have blood clots all of the time. That wasn’t feasible for me, as I’m an outdoor guy and not always close to medical help. He told me the surgery had an 80 percent chance of getting me back to 100 percent,” Ben said.

Ben started physical therapy about three months post-surgery and reports he had full range-of-motion within another two months. “I’ve just been doing my thing since then – hiking, skiing and all sorts of stuff. I was back to 100 percent within six months with about as good a recovery as possible. Based on the stories I’ve heard, that has to do with the fact the surgery was done really well.”

Scott Knock – Army Medic, Husband, Dad, TOS Success Story

A 2010 helicopter crash in Afghanistan left 24-year-old Scott Knock of Fort Collins with shrapnel embedded in his body. Army doctors in Texas quickly took care of that, but they couldn’t find the cause of residual muscle and nerve spasms that almost incapacitated the Army medic.

Scott came home to Colorado and consulted five different doctors. “Neurologist, orthopedic doctors, spine doctors -- you name it, I saw them.” The muscle and nerve spasms “felt like someone was taking a cattle prod to my arm. They radiated up into my neck and caused instant headache,” he said. A pain management specialist near Loveland finally connected the dots and sent him to Dr. Richard Sanders, who then set him up with Dr. Stephen Annest of the Vascular Institute of the Rockies and Presbyterian/St. Luke’s Medical Center.

November 1, 2012, almost two years to the day after his injury, Scott had surgery after Dr. Annest’s suspicion of neurogenic Thoracic Outlet Syndrome (TOS) had been confirmed: “Scott’s muscles compressed the nerves so much they wouldn’t allow the muscles to uncontract.”

“About a month later I was already moving a lot better. Dr. Annest had told me not to expect anything for another six months but I was already feeling on top of the world,” Scott said. And though Scott has not regained full feeling in his arm and hand, he believes he is making good progress. “I just wanted the surgery to be a little bit successful but Dr. Annest far outreached my expectations,” Scott added.

After six months of rehab and physical therapy, Scott is working hard at strength training so that he can go back to full active duty in the Army. He currently works as a hazmat technician for a Boulder pharmaceutical company and is in the National Guard.

“It’s awesome to see his progress,” said Scott’s wife, Kristina. “He can pick up our daughter. When he first came home with his injury, he couldn’t even hold our eight- month-old daughter.”

Scott’s daughter now weighs 36 pounds and he can pick her up and she tells people: “My daddy is getting better.”

Melissa Guzman – Air Force Retiree, Wife, TOS Success Story

Great Falls, Montana resident Melissa Guzman views the last 11 years and nine surgeries as “a test of the Devil to see how far he could push me.”

Her problems all stemmed from Neurogenic Thoracic Outlet Syndrome (TOS), according to Dr. Stephen Annest of the Vascular Institute of the Rockies and Presbyterian/St. Luke’s Medical Center. Melissa’s first symptoms became unbearable in 2002; she was referred to Annest and his surgical partner, Dr. Richard Sanders in 2009. In between, she was frustrated and debilitated and lost a military career. But things began to look up.

Melissa injured her shoulder in hand-to-hand combat as part of an Air Force search-and-seizure exercise. When the swelling subsided, she had surgery to fix the ligaments. Almost a year later she had another surgery to stabilize the shoulder. Numbness and tingling and, ultimately, some stroke-like symptoms continued. She had another procedure to repair a rotator cuff in October 2005. “I spent so much time in medicine the military decided to cross-train me in the medical field,” she joked.

That year there was another crisis. Her right arm swelled up and turned blue during physical therapy. None of several doctors she consulted in Great Falls, Montana could help. Her arm kept swelling and getting bluer.

She went to Billings, three hours away, where a cardio-thoracic surgeon recognized the danger she was in. Already on her way back home in a snowstorm, she and her fiancé, Tim, turned around. The first rib on her right side and the middle scalene muscle were removed on December 5, 2005. Soon after, she was discharged from the military and her other arm started to turn blue, again. Despite the problems, she and Tim married. “He was a godsend,” she said.

Melissa had surgery on the left side in April and started rehab. That August, both her arms started to turn blue. “I wasn’t able to use either arm. Couldn’t do my hair, sleep – and even walking up stairs made me out of breath so I stopped working out.”

Her surgeon had retired but his former nurse heard about Melissa’s situation. “She said it was beyond what anyone in Montana could handle and gave me the name of Dr. Richard Sanders in Denver.” Sanders performed a bilateral pectoralis release August 6 but, after two pain-free years, severe pain returned on her left side and her arm turned blue. She quit her job and Sanders referred her to Dr. Stephen Annest. He said: “Annest has invented a new method. He’s only done about 100 cases, but it’s your best chance.”

After a psychological test to see how well she was handling the repeated surgeries, Annest performed the surgery on October 29 to decompress the nerves of the brachial plexus in the neck and shoulder. He removed part of her rib that had grown back, another scalene muscle and moved a muscle from her back to her chest to anchor the brachial plexus.

Melissa left the hospital five days early and started rehab, pushing herself to the limit. A physical fitness buff, she had worked her way back into great shape when the right side started acting up in the fall of 2011. Dr. Annest operated in February 2012, removing the rib that had grown back and another scalene muscle. She was getting better when it when it went bad again in November.

She hid her swelling and discoloration from her father throughout his Thanksgiving visit and was forced by pain to leave work early on Friday. Five days later she was back in Denver. “Dr. Annest said he needed to do a much bigger surgery to take out my lat and that’d I’d probably not get full use of my arm back. He added that it was my best chance.”

Melissa and her husband drove to Denver on Christmas Day. Surgery was December 27 and Melissa was up right away. She stared down the medical experts, leaving the hospital December 31.

“Dr. Annest gave me all of these directions. It was nice of him to tell me all of the things I couldn’t do again and I told him I begged to differ.” Instead, Melissa ramped up her rehab. She ran three miles in May and did 100 push-ups a couple of weeks later. She started boxing again in June and signed up for an obstacle course race in late July.

All I have is a little numbness and tingling … I’ve conquered my world. If you’re going to be in my world, there is not a ‘can’t, won’t or shouldn’t.’ I won’t do anything stupid – I won’t snowboard, for instance, but the only real limitations are the ones I put on myself.”

Melissa Guzman doesn’t know if she’ll need more surgery. Neither does Dr. Annest. “I’m as far out as the research goes,” she says. “But I haven’t felt this good in almost 11 years.” In her test from the Devil, she’s winning.