When he was diagnosed with Marfan syndrome at age 15, Kristian Twombly knew he’d eventually need heart surgery.
The genetic defect that causes him to have elongated fingers and limbs also caused his heart valves to flap loosely rather than close properly. He put off surgery until his mid-30s, and in August 2009 the St. Cloud State University music professor had mechanical valves installed during open heart surgery.
That fixed one problem that Twombly had carried with him from his youth. But he continued to have migraine headaches that he remembered first experiencing in his 10th-grade English class.
Admittedly not a fan of visiting the doctor, Twombly suffered through the headaches with ibuprofen and aspirin. Then it wasn’t just the headaches and the blurred vision that came with each episode.
“Since heart surgery, I noticed that I would have a migraine headache, and while this visual thing was happening, my right foot would go numb,” he said. “Not like pins-and-needles numb. I could move it, but I just couldn’t feel it.”
He first thought it was one of the many odd side effects he had been experiencing after coming off the heart/lung machine. His heart condition prevented him from taking the drug routinely prescribed for migraines, so his physician decided to rule out other causes of the headaches before turning to a different medication.
That led to an MRI in February — “Just a routine brain MRI,” he recalls.
Afterward, he was waiting in the lobby at the Center for Diagnostic Imaging, waiting for the packet of pictures that he would take back to his physician. After an unusually long wait, a nurse asked him to come back and see the doctor. He recalls clearly what happened next and what the doctor said.
“Well, it’s been there for about 20 years we think, and it’s sitting right on top of your head. And we’ve taken the liberty of calling a neurosurgeon and setting an appointment with a neurosurgeon. We’ll just take you up right now. Have you eaten anything today?”
Just 18 months after open heart surgery, Twombly again was facing a potentially life-altering procedure. He had a baseball-sized brain tumor that had been growing in his head since his grade-school days. St. Cloud neurosurgeon Dr. Gregory Sherr removed the tumor in March, and Twombly has emerged with little, if any, lasting effects of the surgery.
The heart surgery caused him to reassess what was important in life, he said. He had been reluctant to take out a loan to buy a car or a house because he thought the Marfan syndrome would kill him before he could pay off those loans. The heart surgery made him grow up a bit, he confesses. The brain surgery 18 months later only confirmed those feelings.
“In many ways, it was similarly life-changing. My girlfriend has three kids. We went through Thanksgiving and Christmas last year together. But it was very important to me that we, that WE, cook Thanksgiving and that WE have Christmas together,” he said. “My commitment to family and to life in general and to improving myself and to being a positive influence on the world is, if not redoubled, certainly is a huge priority to me.”
Critical stage
Sherr got the call from a radiologist he knows who works downstairs in the building where Sherr works.
You won’t believe it, Sherr was told. This guy is walking around with a baseball-sized tumor in his head. Can I send him right up?
“My initial impression once I saw the pictures was that this was a slow-growing lesion, 20 years maybe,” Sherr said in an email interview.
Twombly’s brain had dealt with the lesion long enough and now the growth was “pissing his brain off,” Sherr said. It had reached a critical stage.
“I have seen and operated on bigger, so it didn’t surprise me,” Sherr said of the tumor. “But it was located right within and pressing on the area of the left brain that controls his right side, arm and leg, a dangerous location for surgery.”
On the midline of the brain is one of its most essential veins, and the tumor likely began along that wall, Sherr said. That presented another challenge: how to take it out without injuring that critical vein. If that vein is injured, a person can die within minutes.
What’s next?
Heidi Perreault was studying at her Zimmerman home when she received a text message from her boyfriend.
It was bad news. That’s all Twombly’s message said.
I think I have a brain tumor, he replied.
“It was good that we now had an idea what it was,” Perreault said during a recent interview, “but it was scary having something in his brain.”
Still, questions remained. How do we get it out? What are the possible negative outcomes of operating on the brain? Will he be the same Kristian Twombly after the surgery that he is now?
Because the tumor was entwined with the tissues that control his right-side movement, Sherr needed to find a path to the tumor and a path to getting it out.
“We knew we would have to use functional and diffusion tensor imaging MRI sequences to accurately discover the areas around the tumor that were functional and find a path into the tumor,” Sherr said.
Those new types of MRIs “are just being adopted,” he said, and both St. Cloud Hospital and CDI have recently acquired the expensive technologies. They allow the surgeon to see the brain in 3-D, to identify where the tumor is and where the vital brain tissues are that control movement.
Twombly’s confidence in Sherr, whom he jokingly calls Dr. Sure Of Himself, made it easier for him to decide that he could have his brain surgery in St. Cloud rather than at the Mayo Clinic where he had his heart surgery.
“It was really sort of affirming in that regard,” Twombly said. “There was no question that he was going to be able to do it and that, yeah, I could have gone to the Mayo where I had my heart surgery. I had no worries about doing it in St. Cloud, and I’m glad that I did.”
Friend feels concern
Mark Springer taught the History of Rock ’n’ Roll class at St. Cloud State before Twombly was hired about six years ago. Twombly took over teaching that class and became close friends with Springer, who is interim dean of the university’s College of Liberal Arts.
Springer and Twombly crossed a few items off Twombly’s “bucket list” before the 2009 heart surgery. Later, Springer was one of a handful of people in a tight-knit circle of music friends who would learn about the brain tumor.
Springer’s thoughts immediately turned to a teacher he once had who was diagnosed with a brain tumor and died soon after.
“My first reaction honestly was that I was concerned that he was a dead man walking,” Springer said. “That’s just from my own experience. It heightened my concern dramatically. And then I wanted to know where it was and could they operate?”
Twombly scheduled the surgery for the Friday before spring break, partly because he wanted to limit the number of days of work he would miss.
“There was more tumor than cyst,” Sherr said. “It was a meticulous and difficult tumor to remove.”
The surgery took several hours, during which doctors used a microscope to guide their moves.
Springer was in South Africa on a study-abroad trip during his friend’s surgery.
“That was tough,” he said. “It was hard to be at a distance knowing that our friend was going through this.”
The postsurgery concerns soon would turn to the quality of life that Twombly would have once he recovered.
New perspective
“Every day I am amazed that he is exactly what I knew before the surgery,” Perreault said. “It is humbling that humans have the ability to remove from his brain what was inside there and return him to me as he was before, joking around with us and loving us. It’s truly amazing.”
About the only lasting effect of the surgery is that Twombly has a void, or space, in his brain where the tumor used to be. The brain doesn’t grow or expand to fill that space, and Twombly and his friends had some fun with that.
There was a contest to decide what best to put in the void where the tumor once resided.
Suggestions ranged from a golf ball to some new electronic musical component to a Wi-Fi hot spot.
Sherr told him the void actually would fill with a fluid mixture of sugars and some proteins.
“I was drinking a lot of apple juice at the time,” Twombly said, “so I joked that it was going to be filled with apple juice.”
Reality is that he’ll have to have regular brain scans to see if the tumor, which wasn’t cancerous, grows back. Twombly believes his heart condition and Marfan syndrome pose bigger threats down the road than his brain.
Trained as a composer, he writes music but also loves to perform. He admits that he could probably have made due with some loss of motor control without it having a severe impact on his research or his teaching.
Springer also is amazed at the fact that Twombly came out of brain surgery the same person.
“I was surprised. I figured there would be some lasting effect,” Springer said. “Even if it was that they couldn’t take care of the migraines. But Kristian is certainly no different than he was before he went in. He may be harboring this inside, but it hasn’t changed his spirit.”
But Twombly has changed. His initial Marfan’s diagnosis came with a life expectancy of about 40 years. That’s why he had such a nonchalant attitude about the future and how much there was going to be for himself.
Medical advances have extended that life expectancy for those with Marfan’s. And Perreault and her three children also have given Twombly greater perspective on life and what’s important.
“I might have been a little bit more living in the instant before the surgeries,” he said. “It’s a tough thing to grapple with. But the sort of double whammy of these things coming together and the potential severity, it’s a lot to consider. But I can say this. At no point have I sat down and said, ‘Why me?’ ”
“I think he’s done a better job putting importance on the things that matter to him and less time sweating the smaller things,” Perreault said.
And to his friends, he’s a unique example of the resilience of the human spirit.
“To see friend go through this once, and then to see it twice? It’s really hard,” Springer said. “But I’m just amazed at modern medicine and the ability that these amazing doctors have. And also the power of the human spirit, not only to see it in Kristian and his recovery, but in his friends and family. Just to see that on display is amazing. You read about it. You know, people will read your paper and say, ‘That’s nice.’ But until you live it and see it ...”
Editor’s note: Twombly is a member of the Opinion Pages’ Times Writers Group.
The genetic defect that causes him to have elongated fingers and limbs also caused his heart valves to flap loosely rather than close properly. He put off surgery until his mid-30s, and in August 2009 the St. Cloud State University music professor had mechanical valves installed during open heart surgery.
That fixed one problem that Twombly had carried with him from his youth. But he continued to have migraine headaches that he remembered first experiencing in his 10th-grade English class.
Admittedly not a fan of visiting the doctor, Twombly suffered through the headaches with ibuprofen and aspirin. Then it wasn’t just the headaches and the blurred vision that came with each episode.
“Since heart surgery, I noticed that I would have a migraine headache, and while this visual thing was happening, my right foot would go numb,” he said. “Not like pins-and-needles numb. I could move it, but I just couldn’t feel it.”
He first thought it was one of the many odd side effects he had been experiencing after coming off the heart/lung machine. His heart condition prevented him from taking the drug routinely prescribed for migraines, so his physician decided to rule out other causes of the headaches before turning to a different medication.
That led to an MRI in February — “Just a routine brain MRI,” he recalls.
Afterward, he was waiting in the lobby at the Center for Diagnostic Imaging, waiting for the packet of pictures that he would take back to his physician. After an unusually long wait, a nurse asked him to come back and see the doctor. He recalls clearly what happened next and what the doctor said.
“Well, it’s been there for about 20 years we think, and it’s sitting right on top of your head. And we’ve taken the liberty of calling a neurosurgeon and setting an appointment with a neurosurgeon. We’ll just take you up right now. Have you eaten anything today?”
Just 18 months after open heart surgery, Twombly again was facing a potentially life-altering procedure. He had a baseball-sized brain tumor that had been growing in his head since his grade-school days. St. Cloud neurosurgeon Dr. Gregory Sherr removed the tumor in March, and Twombly has emerged with little, if any, lasting effects of the surgery.
The heart surgery caused him to reassess what was important in life, he said. He had been reluctant to take out a loan to buy a car or a house because he thought the Marfan syndrome would kill him before he could pay off those loans. The heart surgery made him grow up a bit, he confesses. The brain surgery 18 months later only confirmed those feelings.
“In many ways, it was similarly life-changing. My girlfriend has three kids. We went through Thanksgiving and Christmas last year together. But it was very important to me that we, that WE, cook Thanksgiving and that WE have Christmas together,” he said. “My commitment to family and to life in general and to improving myself and to being a positive influence on the world is, if not redoubled, certainly is a huge priority to me.”
Critical stage
Sherr got the call from a radiologist he knows who works downstairs in the building where Sherr works.
You won’t believe it, Sherr was told. This guy is walking around with a baseball-sized tumor in his head. Can I send him right up?
“My initial impression once I saw the pictures was that this was a slow-growing lesion, 20 years maybe,” Sherr said in an email interview.
Twombly’s brain had dealt with the lesion long enough and now the growth was “pissing his brain off,” Sherr said. It had reached a critical stage.
“I have seen and operated on bigger, so it didn’t surprise me,” Sherr said of the tumor. “But it was located right within and pressing on the area of the left brain that controls his right side, arm and leg, a dangerous location for surgery.”
On the midline of the brain is one of its most essential veins, and the tumor likely began along that wall, Sherr said. That presented another challenge: how to take it out without injuring that critical vein. If that vein is injured, a person can die within minutes.
What’s next?
Heidi Perreault was studying at her Zimmerman home when she received a text message from her boyfriend.
It was bad news. That’s all Twombly’s message said.
I think I have a brain tumor, he replied.
“It was good that we now had an idea what it was,” Perreault said during a recent interview, “but it was scary having something in his brain.”
Still, questions remained. How do we get it out? What are the possible negative outcomes of operating on the brain? Will he be the same Kristian Twombly after the surgery that he is now?
Because the tumor was entwined with the tissues that control his right-side movement, Sherr needed to find a path to the tumor and a path to getting it out.
“We knew we would have to use functional and diffusion tensor imaging MRI sequences to accurately discover the areas around the tumor that were functional and find a path into the tumor,” Sherr said.
Those new types of MRIs “are just being adopted,” he said, and both St. Cloud Hospital and CDI have recently acquired the expensive technologies. They allow the surgeon to see the brain in 3-D, to identify where the tumor is and where the vital brain tissues are that control movement.
Twombly’s confidence in Sherr, whom he jokingly calls Dr. Sure Of Himself, made it easier for him to decide that he could have his brain surgery in St. Cloud rather than at the Mayo Clinic where he had his heart surgery.
“It was really sort of affirming in that regard,” Twombly said. “There was no question that he was going to be able to do it and that, yeah, I could have gone to the Mayo where I had my heart surgery. I had no worries about doing it in St. Cloud, and I’m glad that I did.”
Friend feels concern
Mark Springer taught the History of Rock ’n’ Roll class at St. Cloud State before Twombly was hired about six years ago. Twombly took over teaching that class and became close friends with Springer, who is interim dean of the university’s College of Liberal Arts.
Springer and Twombly crossed a few items off Twombly’s “bucket list” before the 2009 heart surgery. Later, Springer was one of a handful of people in a tight-knit circle of music friends who would learn about the brain tumor.
Springer’s thoughts immediately turned to a teacher he once had who was diagnosed with a brain tumor and died soon after.
“My first reaction honestly was that I was concerned that he was a dead man walking,” Springer said. “That’s just from my own experience. It heightened my concern dramatically. And then I wanted to know where it was and could they operate?”
Twombly scheduled the surgery for the Friday before spring break, partly because he wanted to limit the number of days of work he would miss.
“There was more tumor than cyst,” Sherr said. “It was a meticulous and difficult tumor to remove.”
The surgery took several hours, during which doctors used a microscope to guide their moves.
Springer was in South Africa on a study-abroad trip during his friend’s surgery.
“That was tough,” he said. “It was hard to be at a distance knowing that our friend was going through this.”
The postsurgery concerns soon would turn to the quality of life that Twombly would have once he recovered.
New perspective
“Every day I am amazed that he is exactly what I knew before the surgery,” Perreault said. “It is humbling that humans have the ability to remove from his brain what was inside there and return him to me as he was before, joking around with us and loving us. It’s truly amazing.”
About the only lasting effect of the surgery is that Twombly has a void, or space, in his brain where the tumor used to be. The brain doesn’t grow or expand to fill that space, and Twombly and his friends had some fun with that.
There was a contest to decide what best to put in the void where the tumor once resided.
Suggestions ranged from a golf ball to some new electronic musical component to a Wi-Fi hot spot.
Sherr told him the void actually would fill with a fluid mixture of sugars and some proteins.
“I was drinking a lot of apple juice at the time,” Twombly said, “so I joked that it was going to be filled with apple juice.”
Reality is that he’ll have to have regular brain scans to see if the tumor, which wasn’t cancerous, grows back. Twombly believes his heart condition and Marfan syndrome pose bigger threats down the road than his brain.
Trained as a composer, he writes music but also loves to perform. He admits that he could probably have made due with some loss of motor control without it having a severe impact on his research or his teaching.
Springer also is amazed at the fact that Twombly came out of brain surgery the same person.
“I was surprised. I figured there would be some lasting effect,” Springer said. “Even if it was that they couldn’t take care of the migraines. But Kristian is certainly no different than he was before he went in. He may be harboring this inside, but it hasn’t changed his spirit.”
But Twombly has changed. His initial Marfan’s diagnosis came with a life expectancy of about 40 years. That’s why he had such a nonchalant attitude about the future and how much there was going to be for himself.
Medical advances have extended that life expectancy for those with Marfan’s. And Perreault and her three children also have given Twombly greater perspective on life and what’s important.
“I might have been a little bit more living in the instant before the surgeries,” he said. “It’s a tough thing to grapple with. But the sort of double whammy of these things coming together and the potential severity, it’s a lot to consider. But I can say this. At no point have I sat down and said, ‘Why me?’ ”
“I think he’s done a better job putting importance on the things that matter to him and less time sweating the smaller things,” Perreault said.
And to his friends, he’s a unique example of the resilience of the human spirit.
“To see friend go through this once, and then to see it twice? It’s really hard,” Springer said. “But I’m just amazed at modern medicine and the ability that these amazing doctors have. And also the power of the human spirit, not only to see it in Kristian and his recovery, but in his friends and family. Just to see that on display is amazing. You read about it. You know, people will read your paper and say, ‘That’s nice.’ But until you live it and see it ...”
Editor’s note: Twombly is a member of the Opinion Pages’ Times Writers Group.
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