Reeves endures tumors in nervous system
Lindsay Reeves fights through pain, day and night.
The Luling woman was diagnosed with the rare genetic disorder Neurofibromatosis Type II (also known as NF2) at the age of 29 in December of 2011, and the burdens she’s faced since have not been easy – physically, emotionally or financially.
The disease causes the development of benign tumors throughout the nervous system, developing from the balance and hearing nerves supplying the inner ear. Signs and symptoms may vary. The tumors are most commonly found in the brain and spinal cord.
Prior to her diagnosis, Reeves led a normal, healthy life. Things changed after she began experiencing severe headaches and hearing loss. Originally, her doctors believed she was suffering from migraine headaches.
“I was working and trying to go back to school,” Reeves said. “But I kept having headaches. They gave me medication to deal with it, but they kept getting worse. They thought it was migraines … I finally found a neurologist willing to take an MRI, and she told me something showed up on the scan.”
It turned out to be a brain tumor. She had surgery to have it removed in January of 2012, and almost all of it was successfully removed.
But despite that, her problems persisted — and became more severe. The headaches didn’t stop and, worse, she began suffering from seizures. Seeking answers, she underwent clinical trials in Maryland, resulting in her second brain surgery in May of 2014; a tumor was pushing on the frontal lobe of her brain, causing the seizures. The disease caused tumors on Reeves’ leg, back and shoulder area.
“I’ve had quite a few surgeries over the past four to five years,” Reeves said.
Pain tolerance has become an issue as her symptoms have worsened, and medication has only gone so far. Reeves often needs a cane to walk or even a wheelchair to maneuver around, and she said the pain has been debilitating in numerous ways. She’s often physically unable to do day to day chores or attend her daughter’s high school events. Not even sleep brings reliable relief, as she at times wakes up in the middle of the night in tremendous pain.
She’s been able to lean on her fiancé, Michael Albritton, who she said provides an “amazing” support system.
Naturally, however, she longs to be able to once again care for herself, her home and her family the way she could before.
“It’s taken everything from her,” said Albritton, who met Reeves in 2000. “We used to go out and do a lot of things before she was diagnosed, but the reality now is she doesn’t often feel well enough to.”
He said leaving was never a thought.
“It’s nothing special on my end. It’s the woman I love and this doesn’t change the way I feel, so I’m going to do whatever I can to help her,” he said.
Improvement is possible. Reeves can undergo surgery later this month that would offer relief via a “pain pump,” consisting of a pump and catheter surgically placed under the skin that stores and delivers medication straight to the spinal cord. It would also negate the need for reliance on pain pills, which Reeves said have an adverse effect on her liver and body.
This could result in significant improvements in pain symptoms, far less sleepless nights and an overall improvement in Reeves’ quality of life.
She’s had to reach out for help. While insurance will cover a major part of the cost, she will still have to come up with $3,600 out of pocket, $1,600 of which must be paid on the day of the surgery. Her finances have been drained from years of battling NF2, and most of her disability income goes to cover doctor visits, medicine and treatment. She’s set up a GoFundMe page for anyone who’d like to donate to help the cause at https://www.gofundme.com/hghqsmvg. Many have reached out to help immediately, with $665 donated within 24 hours of the page’s creation.
“I can’t even tell you how appreciative I am,” she said. “I’m blessed to have the friends and family I have.”
She also wants to get the message out about NF2, noting that if the disease had been detected earlier, she potentially could have recovered long ago. She encourages people to learn about the symptoms of the illness so that early detection can happen; early warning signs include constant and worsening headaches, hearing loss and bumps on skin, ringing in the ears, poor balance, vision problems and numbness. Many people with the illness don’t experience all signs, only some of them, making awareness of the potential illness all the more critical.
“Don’t take your health for granted. Don’t take your life for granted,” she said. “If you notice the signs, get it checked out.”
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