The Middletown Press (Middletown, CT)
Spine Center diagnoses syndrome, inspires patient
At 17, he was slated to play college baseball on a full scholarship. By 19, he was bedridden, unable to even walk or sit in class, on chemotherapy drugs he didn’t need, given for an ailment he never actually had.
Ryan Lukas’s life changed when a stray pitch came too close to his face that fateful day in high school. He bent backward to get out of the way — saved his face, but something in his back popped. Like any teenager with dreams of pro ball, he kept on playing, but before the season was over, the pain in his back became too great to ignore.
He wore a back brace for an entire year, trying to avoid surgery that could not be avoided. When he finally had that surgery, he recovered, but that’s not his full story. His story happens in the pain after recovery.
“Sometimes it felt like the floor was lava, literally,” Lukas said.
Shooting pains, starting in his feet, made their way up to his knees.
“It traveled to my knees, and they would turn purple. It looked like bruising, but it wasn’t. Then the pain went up into my hips. Because it was traveling, they thought an auto-immune disorder.”
But Lukas didn’t have an auto-immune disorder. It took him more than a year to find someone who could correctly diagnose him. Dr. Rajat Sekhar at the Spine Wellness Center in Westport found that Lukas was suffering from Complex Regional Pain Syndrome.
“This is a dysfunction of the nerves, where you can develop a maladaptive loop from the peripheral nervous system to the central nervous system that propagates pain without an active stimulus,” Sekhar said.
It occurs after a trauma, and there is no telling whom it will affect. It can happen after a fracture or break, and sometimes it occurs after a surgery.
“Some people are just prone to it,” Sekhar said. “It has nothing to do with true surgical outcome. It can be post any trauma: fracture, fall, crush injury, or surgery.”
Complex Regional Pain Syndrome is hard to diagnose and, for that reason, is often overlooked.
“A syndrome is a whole bunch of symptoms put together. It’s a tough diagnosis,” Sekhar said. “It’s a diagnosis of exclusion. You have to rule other things out. It is not commonly made, and it’s missed a lot.”
Because of that, patients can feel like they are not being heard, or like they are not important.
“There were so many times I thought I was going crazy. In the process of explaining myself, I would be extremely insecure,” Lukas said. “After surgery, I would tell my orthopedic surgeon in New York about these symptoms, and, when I would, he would say things to me like, ‘You’re going to have to suck it up. Go put on some shoes and start walking and running.’”
“I see so many patients for second and third opinions, and they have lost confidence in healthcare in general,” Sekhar said. “They tell me that their pain is 13 out of 10 because they are used to not being believed. They come in with a lot of distrust because they’ve been dismissed.”
At the Ayer Neuroscience Institute, Lukas received nerve blocks, through injections to the spine. Right after that, he would go to physical therapy, while the blocks were at their strongest. This was possible because all of the services and personnel are under the same roof.
“We prepare the person mentally, then administer a nerve block, then physical therapy, and all the healthcare professionals talk with one another to see how the care is progressing,” Sekhar said. “With this kind of disease, you want to be aggressive and fast, but you want to make sure you are not overwhelming the person.”
Lukas also saw — and continues to see — a pain psychologist to help him with the mental burden of pain.
“I did cognitive exercises to reshape how I think about pain. You can change the exacerbation level just by changing the way you think,” Lukas said. “You accept that this is pain.
You know it is temporary. It’s not a life-ending thing. Yes, I live life in pain, but I won’t allow it to dictate my life and define who I am.”
Lukas is walking again, his pain is managed. Sekhar considers him a great success.
“Someone suffering from this needs close follow-up, and timely and aggressive care, and, with that, Ryan recovered with a quick turnaround,” Sekhar said. “More remarkable is that he is mature beyond his years. He followed through with the treatment, and he was attending college away from here, so his treatment was remote. He’s made leaps and bounds.”
And while Lukas will never be a baseball player, he has redefined who he is. Studying pre-med at Holy Cross, Lukas says he wants to become a doctor, inspired by Sekhar.
“What’s my destiny? What am I being called to do?” he said. “I thought, ‘I want to be a doctor and take after Dr. Sekhar.’ Every time I go to his office and talk to him, I see his compassion and empathy, and it makes me want to be a physician to help others.”
This is just one example of Hartford HealthCare St. Vincent’s Medical Center bringing more specialists and providers to the community. Tune into Hartford HealthCare St. Vincent’s Medical Center’s Facebook Live discussion on Thursday, May 26, 2022 at noon, where you can ask your questions. For more information, log onto Hartfordhealthcare.org/neuro or call 203-226-2490.