Headaches Lead to Rare Diagnosis and Brain Surgery

December 21, 2021

ST. LOUIS - With his third baby due, work stress and a construction project at home, Tony Reis chalked up his new headaches to stress. However, something just didn’t feel right – he had never really had headaches before. With input from his primary care doctor, he adjusted his anxiety medication.

“After changing the dose, the headaches went away for a couple weeks,” Tony said. “But then they came back with blurry and double vision, and I knew something was wrong.”

Tony once again reached out to his primary care physician, Dr. Matthew Meyer, who ordered an MRA, a type of MRI that shows blood vessels inside the body. After the scan, he was sitting in the parking lot catching up on work when he got a call from the radiologist.

“The doctor said if I was driving, I needed to find a safe space to pull over, so I knew it was serious,” Tony said. “Once he realized I was still there, he told me to come inside right away.”

Rare Diagnosis Leads to Brain Surgery

Tony Reis shares his story about a rare diagnosis and subsequent brain surgery. Dr. Justin Sweeney explains the rarity and risks associated with the complex surgery.

The radiologist explained that the MRA showed blood gathering in his head, which can be fatal, depending on the cause. Tony had a CT scan, and at that point, the doctor wouldn’t let him move.

“He didn’t let me get up. He said you have two areas that are bleeding, and we’re going to call an ambulance,” Tony said. “I was given the choice of which hospital, and I chose Mercy.”

With everything happening so fast, Tony didn’t know exactly what the situation was but called his wife, Kayla, to meet him at the hospital.

Once at Mercy St. Louis, another MRI identified the malformation where the blood had collected and ruled out an aneurysm. That’s when Tony met neurosurgeon Dr. Justin Sweeney.

“Tony had a very unusual situation – he had a malformation in the brain called a cavernous malformation, something he was likely born with,” Dr. Sweeney said. “These are very rare lesions and are often found incidentally after patients experience a symptom, such as double vision and headache.”

Cerebral cavernous malformations are abnormally formed blood vessels in the brain. Symptoms occur when the small spots hemorrhage, a rare form of hemorrhagic stroke. Symptoms occur when the irregular vessels burst leading to bleeding in the skull that can either irritate or injure the brain. According to Dr. Sweeney, the majority of these malformations are superficial and have a small risk of hemorrhage. However, deep malformations in the brain stem, like Tony’s, have a much greater of rupture and ultimately higher risk of re-hemorrhage, approximately 60% per year. 

tony-kids-rare-cavernous-malformation Tony Reis enjoys time with his two older children after his surgery.

“The brain stem is a very eloquent area of brain, lots of information coming and going to the rest of the body,” Dr. Sweeney said. “A large hemorrhage in that area could cause neurological deficits such as weakness, numbness, problems with vision, but ultimately could be fatal.”

Tony was scheduled for surgery a week later, giving him time at home with his wife and kids. During surgery, Dr. Sweeney removed both hemorrhage and malformation and drained the fluid that had accumulated on the brain.

“He did extremely well,” Dr. Sweeney said. “This type of surgery has a lot of risks; operating in the brain stem itself is not without risk. I’ve seen him back in the office for follow up and he’s walking, talking and back to just about everything in normal life.”

Because Mercy St. Louis is a referral center, Dr. Sweeney sees one or two brain malformations each year. However, he said, most doctors at smaller hospitals might see only one or two in their entire career.

Tony and Kayla celebrated their 12th wedding anniversary this summer and welcomed their third child in October.

“It really puts it all into perspective, the days that have gone by,” Kayla said, tearing up. “Dr. Sweeney and his team gave us the best gift we could have asked for, for our 12-year anniversary. Just knowing the next season of life that we’re going through and knowing he will be here for all three of our kids and me as a partner, I’m very thankful.”

Tony’s message to others: “Listen to your body. If you’re going through stuff that’s not normal, get it checked out.”