Chiari malformation is a condition in which brain tissue protrudes into the spinal canal. It occurs when a part of the skull is abnormally small or misshapen, pressing on the brain and forcing it downward.
Tammy Schalesky, of Minot, discovered she had a type 1 Chiari malformation in February of 2008 when a physician picked up on some of her symptoms and ordered an MRI scan. Type 1 Chiari develops as the skull and brain are growing, and signs or symptoms may not occur until late childhood or adulthood.
"I'd been having headaches going clear back to my college days," Schalesky said. "I'm 46 now. I gave up complaining about headaches 10 years ago."
Katina Tengesdal/MDN - - Tammy Schalesky looks over information on Chiari malformation.
"I was told, more or less, to just deal with it," she said. "I've been told it was depression and everything else. After learning more about Chiari, I've found that's common for people to not get a diagnosis."
Dr. Mark Monasky, neurosurgeon for St. Alexius Medical Center in Bismarck, said that for many people with Type 1 Chiari malformation, the main symptom they will have is frequent headaches at the back of the head.
"Type 1 Chiari malformation symptoms can present really at any time during childhood, and sometimes even later on in a middle-aged person," Monasky said. "I've operated on several patients who've had symptoms present at Tammy's age."
"Oftentimes what happens is as people grow, the anatomy changes a little bit during the growth process. Chiari occurs essentially when the compartment where the brain sits in the skull is not big enough. If the brain grows a little faster than the skull bone, the tightness will increase, and it gets to the point where it could cause symptoms," he added.
Type 1 Chiari malformation frequently goes undiagnosed, Monasky explained, as it is only visible by MRI scan.
"Most of the time, when I've had patients with this condition, it turns out they probably had their symptoms overlooked. Headache and numbness in the arms and legs are common symptoms for many conditions, but they're also symptoms of Chiari," Monasky said.
"You almost have to be thinking about it (Chiari) or you'll miss it. It's just one of those diagnoses," he said.
Deciding on surgery
For about 80 percent of patients, Monasky said, Type 1 Chiari malformation causes no symptoms, and no further treatment is necessary besides watchful waiting. For those who do have symptoms, they often choose surgery based on whether their symptoms are significantly affecting their life. Patients should have also exhausted other treatment options such as physical therapy and pain medication before undergoing surgery.
"It's really difficult to know whether or not to operate on some of these patients. Often we'll discover it (Chiari malformation) by accident, and I'll ask the patient if they have pain in the back of the head. Even if they have pain, we will suggest to them that they try physical therapy and pain medication, and if that fails, that's when we talk to them about surgery," Monasky said.
For Schalesky, the decision to have surgery wasn't taken lightly. She considered it for a year.
"By then, the headaches had gotten so bad in the back of my head and neck region, I knew it was time. Doctors did another MRI, and they could see some of my cerebral spinal fluid was being blocked," Schalesky said.
Monasky described Schalesky's surgery, noting that there are different types of surgery used to ease symptoms of a Chiari malformation, with all types involving a similar basic process.
"All of the surgeries basically involve making an incision in the back of the head and removing a portion of the skull where the volume is too small, where things are tight. Some doctors will then go in and open the dura (covering of the brain) and that's what I did with Tammy," Monasky said.
"That's really what releases pressure on the brain, in my opinion. We open up the dura, and then we put a loose patch in, so it gives the brain a lot more space," he added.
Surgery to correct Chiari malformation isn't without risks.
"As with any surgery on the brain, patients could die," Monasky said. "They could have a stroke. They could have damage to the brain that could cause paralysis, or they could get an infection."
"There is a risk that surgery may not help the headaches, or patients may have a spinal fluid leak where the patch is sewn on," he added.
The main benefit of the surgery is that if it is successful, patients' headaches are cured. Schalesky has seen a marked improvement since her surgery, after one setback when she experienced a spinal fluid leak after surgery. She had additional surgery to correct the problem and has since been doing well.
"My headaches were gone after surgery and they've never returned," Schalesky said. "Things are really looking up, and I couldn't be happier."
After her recovery, Schalesky was interested in sharing her story with others in the hopes of passing on information about Chiari malformation.
"I hope the medical community continues to make people more aware (of Chiari malformation) and I hope to open up the general public's awareness that people can be suffering medically, even if it's invisible," Schalesky said.
"At first, I thought, 'Why me? Why did this happen?'" she said. "I've realized since then that I've got a future. Things might not be what I want them to be, I've got an illness, but I can deal with it. There's other people out there that are affected by this, and I want to help them if I can."