The time it takes to find a good doctor and get relief from a life-threatening brain illness can seem endless, but persistence and the will to survive has been Nikki Batsford's saving grace thus far in her ongoing struggle with hydrocephalus.
Batsford has a rare form of an illness that has been almost impossible to cure, because she didn't have the right diagnosis and the doctors treating her didn't have expert knowledge of her condition.
Last December, however, Batsford was finally granted an exception to have six consultations with a specialist at Johns Hopkins to examine her hydrocephalus, a condition that causes cerebrospinal fluid buildup in the brain resulting in headaches, nausea, collapsing, and that lately has inhibited Batsford's breathing and swallowing.
"I have seen Dr. Luciano for an initial consultation, but what's happened since then unfortunately amounts to a whole lot of nothing thanks to United Health's ongoing roadblocks," said Batsford.
The consequences are real if Batsford doesn't get surgery soon. Dr. Luciano could be her last hope, and only time will tell if she can make a full recovery.
Yet, Batsford has been persistent this entire time. And now there's a chance that the UnitedHealthcare Rhody Health Partners Program will allow more than just visitations with Dr. Mark Luciano, the director of the Johns Hopkins Cerebral Fluid Center.
The lifelong, chronic condition is a result of an operation back in 2000, when Batsford underwent a Chiari malformation surgery at Hasbro Children's Hospital. Since then, the 34-year-old has visited doctors, undergone procedures to little avail and endured an insurmountable malaise associated with the neurological disorder.
Batsford has experienced a lifetime of chronic pain with sleepless nights and trouble breathing, and doesn’t know what to expect day to day. She essentially needs a "redo" of her Chiari operation, the surgical procedure to remove the bone at the back of the skull.
"They have to support and protect the cerebellum," she said, referring to the evaluation that Dr. Luciano provided at her consultation last year.
Batsford needs some form of "bracing" to be inserted into her cerebellum, according to Dr. Luciano's diagnosis.
"None of that happened when they did the operation way back when," she recalls. "They took out a massive piece of bone and didn't do anything to protect or hold the cerebellum in place."
Prior to her upcoming surgery, however, Batsford first had to receive testing to rule out complicating spinal fluid leaks, cysts and shunt obstructions.
The insurance company refused Johns Hopkins the right to perform the testing Batsford needed for the Chiari surgery. That testing, instead, had to be done locally at Rhode Island Hospital in January of this year.
Batsford wishes that the tests could have been done in-house in Baltimore using their specialized protocols, but her insurance wouldn't allow it.
"The incompetence and adherence to ridiculous policies were so reminiscent of the hell I endured in 2000 that it permanently ended any debate about reconsidering the hospital," she says.
But things are looking more like Dr. Luciano will indeed be allowed to perform the surgery, yet it may take more time to push the paperwork through than Batsford originally thought when she saw Dr. Luciano last year on Dec. 6 for that initial visit.
From here, a single case authorization to allow Dr. Luciano to proceed with the operation may get the green light from United Health provided no there's no red tape, she explained.
For Batsford, that would be a dream come true.
"Unfortunately, my surgery is also much longer than his average, and it's going to take until late April/early May to find a 4-5 hour block for me."
Still, Batsford is hopeful that Dr. Luciano can proceed with an operation after she's been waiting well over a decade for answers. She can only hope that the surgery is successful, and that someday she can sleep soundly, knowing that her wounds are healed and her future is bright.
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janicebatsford
I am Nikki's mom, Jan. A couple of days before this story was printed Nicole received word that her surgery was denied by United Healthcare due to "LACK OF MEDICAL NECESSITY". This is outrageous and in my opinion criminal. It took journalistic coverage and the help of 3 Congressmen to get Nikki to Johns Hopkins for her first visit. The need for surgery was determined then, December 6th. Every passing week since then has stolen what little life Nikki has. Agreeing to diagnostics and surgery with Dr. Luciano should have been evident and deemed urgent. But medicine is a bean counting, pencil pushing game in which Nikki is a statistic. She needs an expedited YES and she needs it NOW.
Saturday, March 25, 2017 Report this