Brain surgery travel & rehab

Life has taken a major unexpected turn for one of our very own: Joey Cappola.

We’re raising money for a young man who needs help battling a dangerous brain condition; a young man who routinely excels at everything he puts his mind to and is loyal beyond measure.

The short story

On May 21 and again May 31, Joey had two life-threatening tonic clonic seizures. A significant brain bleed was discovered at the second ER visit on May 31. At that time, Joey was admitted to neurological ICU at AdventHealth just 2 weeks after sister, Dominique Greco, left the same hospital post-emergency spine surgery. The days in between included a series of unexpected, life-changing news…

Joey is currently under extensive neurological testing and it may still be weeks/months until a diagnosis or plan of care is decided on. In the meantime, Joey remains high risk for another brain bleed and is battling with lot of physical pain, emotional turmoil and more medical bills everyday. The short term goal is to manage his seizures with medication while more testing is done. He is not to drive, work or be unattended during this time while doctors are still researching his case to determine “did the seizures cause the brain bleed or did the brain bleed cause the seizures?” Which are two very different cases.

A 4th seizure, that lasted over 30 minutes on June 16, sent Joey back to the AdventHealth Orlando hospital where he remains in the ICU where his team of neurosurgeons, neurologists, interventionists and radiologists are considering things like Gamma Knife radiosurgery, brain surgery and the right cocktail of anti-seizure medications.

The long story

Between the after-effects of these seizures, plus trying multiple new anti-seizure medications, plus the physical impacts of the blood/swelling/pressure on his brain, Joey’s been dealing with a mix of nonstop headaches, mood swings, memory loss, paranoia, and pulled muscles from the intense convulsing.

Joey’s under the care of neurologist Dr. Sadek and neurosurgeon Dr. Ghandi. Leading up to this current ICU stay, Joey was sent to 5-day long 24 hour “epilepsy monitoring” facility where they stress-tested his brain to induce a 3rd tonic clonic seizure (aka Grand mal seizure). The stress tests were effective and on June 13, while hooked up to this 5-day continuous EEG machine, Joey seized and that “brain electricity data” was collected. His neuro team is waiting on reports from that study. Hours after leaving Orlando Epilepsy Center on June 16, Joey had a prolonged focal seizure just hours later and was ultimately re-admitted to the ICU where he is now.

In 2016, as a precaution after a nasty concussion from playing football at Edgewater High School, Joe, Paul and Dominique had some neurological testing done and discovered at that time that Joey had a “cavernous malformation” or “cavernoma” in his brain which (for years, until now) remained completely asymptomatic. But as of May 21 2023, the cavernoma in his brain began to bleed. Cavernous malformations are clusters of abnormal, tiny blood vessels and larger, stretched-out, thin-walled blood vessels filled with blood and located in the brain that are prone to bleed - sometimes so little you’d never even know, sometimes so much it can be fatal. Joey’s cavernoma is located near the cortex where physical functions for the left side of his body are controlled. So far, every neurosurgeon that’s seen his case in the ICU has said that sometimes cavernomas can be surgically repaired but unfortunately the location of Joey’s cavernoma is in such a deep and “eloquent” location that surgery to reach it is a high risk for paralyzing him or being unsuccessful.

Big changes in lifestyle across every category are now necessary for Joey and his family. The brain as we know it, is extremely unique and difficult to understand, repair, and treat. We can only hope that medication can control the seizures and pray that no more brain bleeds or seizures take place. For the next 2-3 months, the swelling and “dried blood” around the bleed make images harder for the doctors to read. Ideally, Joey will be stabilized with medication and prayers will be answered that there is no new cavernoma tumors or brain bleeds in his future.