*John Michael and Maryssa in 2016 when they took Brayden to WrestleMania.*

Maryssa Reese, a 32-year-old native of Texarkana, thought for years she just suffered from migraines. After a routine visit to her eye doctor in 2014, she was informed that something else might be causing the headaches. “I was told that my optic nerves were swollen, and I possibly had a massive tumor,” says Maryssa. After being sent to Ochsner LSU Health Shreveport to see a neuro-ophthalmologist, an MRI was performed. Thankfully, this confirmed no tumor, but a spinal tap was needed for further diagnosis. “Normal pressure for cerebrospinal fluid (CSF) should be about 10-15 mmHg. Mine was at 48 mmHg!” exclaims Maryssa.

That is the day that Maryssa was told that, unlike most brains that regularly produce and absorb CSF to maintain a correct pressure, her brain creates too much fluid and has difficulty absorbing it. Her neuro-ophthalmologist confirmed that she had Idiopathic Intracranial Hypertension, IIH (or IH for short), also previously called Pseudotumor Cerebri. Regardless of the name, it is an uncommon, misunderstood disease, with little research funding, and currently no cure.

*While in the ICU during February 2018, Maryssa had an external shunt (a drain that pulls csf from the brain) for two weeks.*

“I was first put on [medicines to help control the pressure] but started going blind because they weren’t reducing the pressure or the CSF amount,” states Maryssa. The next best option was a cerebral shunt, or piece of narrow tubing surgically placed in Maryssa’s brain and thread under the skin to specific areas of her body to drain. A small valve, surgically placed on Maryssa’s head, helps regulate CSF drainage and pressure.

Shunts that drain into the abdominal cavity are the most common. Out of 12 shunt surgeries that Maryssa has had, at least six have been abdominal shunts and revisions. The most recent abdominal shunt resulted in her body storing the excess fluid instead of soaking up the fluid and releasing it as urine. “My abdominal tissue is hostile to the CSF… I [felt like I] had gallons of fluid stored in my abdominal tissue. I looked like a woman carrying quadruplets,” exclaims Maryssa. “My neurosurgeon had never seen anything like that before.”

*Brayden was so excited for his mom to be home following her 32-day ICU stay in 2018.*

Shunts in her pleural cavity (lung area) have had additional complications. “One time I woke up in the middle of the night not able to breathe … my husband, John Michael, got me to the ER,” says Maryssa. “I had a pleural effusion, pneumonia, MRSA (Methicillin-resistant Staphylococcus aureus) in my lung cavity, and so much fluid … that it was pushing on my heart … I almost died that time. Had we waited much longer [to get to the ER] I wouldn’t have made it because I was drowning.” Maryssa stayed 32 days in the ICU to recover. She had three different brain surgeries during that time, including an external shunt surgery to allow her excess CSF to drain into a bag hanging beside her bed.

*Six weeks prior to this photo of Maryssa before her brother’s wedding this past August, Maryssa was in the hospital on a ventilator and in a coma for over a week.*

Since both abdominal and pleural shunts did not work for Maryssa, she and her doctor decided that a shunt to her heart was the next and last option. “The tubing is thread through my jugular and sits inside my right atrium,” explains Maryssa. While there are occasional adjustments to her heart shunt, this area has worked the longest in her almost 6-year battle with IH, and coincidentally it has had the least complications.

“My support system through all of this is so great,” says Maryssa. “Between my husband, mom, grandparents, in-laws, and my dad and bonus mom … it’s amazing … even my son, Brayden, knows more about brain disease than any 10-year-old should. He is my biggest motivation!” Maryssa is also part of an IH Facebook group that shares memes and encouragements about the rare disease. Friends have continued to support and listen to her on her especially hard days “and my dad often calls just to pray with me and sends me scriptures when I’m having bad pain days,” states Maryssa. “I always know he’ll know the right scripture just to help my day.”

*Tattoo artist Jessica Dillard designed this tattoo of the IIH ribbon for Maryssa, so on her bad days she can always look down and remember that she is a warrior.*

Maryssa continues to stay positive. “Honestly, there’s no point in NOT being positive,” she says. “No one wants to be around or listen to someone mad at the world.” Maryssa’s most inspiring religious sayings are, “God has never given anyone more than they can handle” and “All is well with my soul.” With these guiding encouragements she knows she can persevere.

A few months ago, on July 5, 2020, Maryssa began experiencing seizures, resulting in her husband calling an ambulance. At CHRISTUS St. Michael Health System’s emergency room she continued to have complications and more seizures. Maryssa stopped breathing and was intubated, then flown to Ochsner LSU Health Shreveport. “For seven days I was in a coma … my brain shut down. My doctor believed that my brain needed a rest,” says Maryssa. She was on a ventilator for 12 days and in the hospital for 16 days. When finally released, Maryssa had to use a walker because her muscles had atrophied. Every day home now she continues to heal, but it isn’t an easy road.

Maryssa in 2018 after having her third brain surgery in one month plus a 32-day stay in ICU after having MRSA, pleural effusion, and pneumonia.

While Idiopathic Intracranial Hypertension affects only about 1 per 100,000 people every year, Maryssa Reese is one of the faces that bears this rare and difficult disease. She suffers on a regular basis, but chooses to hope. “Shunts are just a Band-Aid,” states Maryssa. “What I really want is a cure. It’s a rough disease and some may have it and never know until it gets really bad. I hope for more research and awareness so others won’t have to suffer like I have … all I’ve ever wanted to do is spread awareness … and help others to not feel alone in this journey.”

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