12 posts tagged “post”

A bold choice to fight epilepsy

Posted May 6th, 2015 by

As originally seen on the Tampa General Hospital News Center website

It was scary enough for Letitia Browne-James’ parents to witness their child’s epileptic seizures. But they were also frightened when a doctor suggested brain surgery for their 12-year-old.

“My parents said ‘no way,’” Browne-James said. “It was a very scary thought.”

They tried medications, the first step for most of the more than three million U.S. epilepsy patients. But Letitia, like almost a third of patients with epilepsy, could not find a medication that worked. And so for more than 20 years, Letitia fought a losing battle against epileptic seizures that slowly eroded her quality of life.

Finally, at age 31 and desperate for a cure, Letitia took that final dramatic step: brain surgery. This is the story of her journey to become seizure-free.

For thousands of epilepsy patients, brain surgery can be the best option to end seizures. But for these patients with uncontrolled seizures, Browne-James’ experience is typical. Most who eventually have surgery wait 15 to 18 years after diagnosis.

Researchers estimate that well over 100,000 epilepsy patients are good candidates for surgery. But each year, only about 3,000 receive it.

“Surgery is the most dramatic thing you can do to treat epilepsy,” said Dr. Selim Benbadis, director of the Comprehensive Epilepsy Program at Tampa General and University of South Florida. “But these misconceptions exist. We see patients all the time who say, “Oh, my neurologist said, ‘Don’t do that. That’s a last resort before you die.’ “

For many patients, the risk of uncontrolled seizures is higher than surgery itself, Benbadis said. Two recent studies found most patients were seizure-free afterwards.

“If things aren’t working, there is a next step,” said Benbadis, also a professor of neurology at the USF Health Morsani College of Medicine. “Get to an epilepsy center, preferably Level IV, and see what’s causing your seizures and what your treatment options are.”

Patients who visit such a center may even discover they don’t have epilepsy.  Up to one-third of them are misdiagnosed.

***

Browne-James, who lives in Orlando, had her first seizure when she was six months old – and then not again until she was 10. She was diagnosed with epilepsy, an electrical disturbance in the brain that causes seizures. She tried one medication, then another.

But at least once a month, she would have a seizure.

She chafed against the limits that came with epilepsy. She wasn’t allowed to go swimming. Or play too far from home.

She feared having a seizure in school or in church, while she was acting or dancing on stage, or, as she got older, on a date. When she met her future husband, Jonah James, Jr., through mutual friends, she told him about the disease right away.

She worried about her wedding day.

“I prayed really hard, just asking God to allow me to let me make it through that day without having a seizure,” she said.

Her seizures gradually got worse, occurring at least once a week. Now a counselor, she worried about having a seizure in front of a client.

Browne-James wasn’t able to drive. She lost a tooth. She cut her knee so badly that it required stitches and left a sprawling scar. She lost count of the cuts and bruises and hospital visits, all caused by seizures she couldn’t remember.

She tried more medications, and grew increasingly frustrated. About three years ago, Browne-James joined a website that has an epilepsy forum and began to talk with other patients.

The website, called PatientsLikeMe, became her lifeline. It prompted her to find an Orlando neurologist who specializes in epilepsy, called an epileptologist. She learned about brain surgery. Her new doctor gave her the names of three hospitals in Florida where the surgery is performed.

When she called the first one, the doctor there said the hospital could perform her surgery. But he told her she would be better off with a center that performs the surgery more often. She said he recommended Dr. Fernando Vale, surgical director of Tampa General’s epilepsy program and vice chair of USF Health’s Department of Neurosurgery and Brain Repair. Tampa General is the busiest epilepsy surgery center in Florida.

***

Browne-James underwent an extensive evaluation to see whether surgery would help her.  Doctors like Benbadis can identify what part of the brain the seizures come from and evaluate whether it controls any essential cognitive functions.  They can also see which side of the brain is dominant.

“We need to educate patients and physicians more,” said Dr. Vale. “It’s still delicate surgery, don’t get me wrong, but people talk about surgery as scary, how it will disfigure them. And there are misconceptions among neurologists. We are trying to reduce these fears and reassure patients it’s a safe operation.”

The extensive neurological testing and use of two-inch long “keyhole” incisions can help reduce those fears, he said. As the day of the surgery grew closer, Browne-James wasn’t scared.

“Everyone thought I was crazy because I was very excited and counting down the days to brain surgery,” she said.

Dr. Vale removed a tiny piece of Browne-James’ brain, about the size of a sugar cube.  Browne-James marveled at how small the scar was.

She hasn’t had a seizure since. And her cognitive abilities are fine; she’s now working on  her PhD.

Since her surgery, Browne-James has become an outspoken patient advocate. She’s made a video for PatientsLikeMe and frequently speaks with patients and medical researchers about the need for patients to be informed about their care.

One of those patients was an 11-year-old girl.  The girl went on to have surgery and has been seizure-free since.

“She doesn’t have to grow up like I did,” Browne-James said. “Living with epilepsy and planning her life around it.”

For more information about the Comprehensive Epilepsy Program at Tampa General Hospital, contact vkelley@tgh.org or call (813) 844-4675.

Story by Lisa Greene, video and photos by Daniel Wallace, Tampa General News, Friday, April 17, 2015.

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Give veterans access to the care they need

Posted March 11th, 2015 by

By Peter Chiarelli, retired U.S. Army general & CEO of our partner One Mind

As originally seen in the Washington Post

Soldiers listen as U.S. Secretary of Defense Ash Carter (not pictured) holds a question-and-answer session with U.S.military personnel at Kandahar Airfield in Kandahar February 22, 2015. (Jonathan Ernst/Reuters)

 

The high-grossing film “American Sniper” was nominated for an Academy Award for best picture, but it deserves higher honors for highlighting one of the greatest causes of casualties in our recent wars: post-traumatic stress (PTS).

The story of Iraq war veteran Chris Kyle, who was killed by a Marine veteran suffering from the effects of PTS and other mental-health problems, makes a powerful case that PTS needs to be a higher national priority. (You’ll note that I don’t include the word “disorder” at the end of PTS; the longer PTSD label actually discourages some service members from seeking treatment.) Since “American Sniper” debuted, Veterans Affairs and Defense Department leaders have been highlighting their programs for helping veterans diagnosed with PTS. But are those programs working?

In too many cases, the answer is no. Our PTS diagnostics remain crude, and no drugs have been approved specifically for treating the condition. Complicating matters, because of genetic and other differences among individuals, patients react differently to varying drugs and dosages. Finding the right mix can be a frustrating saga of trial and error. The wrong drug or dose can, if not caught in time, become a factor in other serious mental-health and behavioral issues, even including suicide.

It only makes sense that once Defense Department doctors identify an effective treatment for a service member, that same treatment should be available when the service member leaves active duty and moves to VA for care. More often than not, however, it is not.

The disconnect occurs because Defense has an all-inclusive drug formulary that allows clinicians to prescribe almost any medication approved by the Food and Drug Administration, while VA has a very limited formulary, primarily to control costs. Medically discharged service members who are given a 90-day supply of PTS prescriptions eventually must report to their VA medical facility for refills, where they are often denied — not for medical reasons but because the medications they rely on are not on VA’s approved list.

This is not a case of one prescriber issuing Bayer aspirin while another uses Saint Joseph. Service members whose symptoms are being controlled by specific anti-depressant, anti-anxiety or anti-psychotic drugs, as well as pain and sleep medications, are forced to give them up and search for a replacement — often a painful and dangerous process — simply because Congress has failed to require Defense and VA to harmonize their drug formularies.

Let me be clear: The problem is not that doctors within the two systems disagree over which drugs should be part of their formularies. Their hands are tied. They must operate within the rules set out by Congress.

Rather than repeating the laborious process of finding another drug that works, many veterans have told me they sought out private providers to fill their prescriptions, usually paying for their medications out of pocket. Imagine how they feel about VA when their first experience with the agency is a doctor telling them they cannot fill a prescription that has relieved their PTS symptoms for months or even years. In some cases, the veteran is not even given enough of the recommended drug to safely discontinue its use.

I have testified about this serious discrepancy, most recently as a member on the Military Compensation and Retirement Modernization Commission, and have discussed it privately with members of Congress. A few have said they will try to address the problem, but most have declined, citing the added cost to VA of a fuller formulary and the time the Government Accountability Office would require to determine the budgetary impact of such a change. Shouldn’t the long-term cost, danger and social impact of denying vital medications to veterans provide a sufficiently compelling reason for Congress to act?

The obvious solution is to include the same medications in both formularies. If this is not possible, Defense Department doctors should exhaust all the options available on VA formulary first before considering any drugs not covered by VA. If neither of these options can be adopted, Defense doctors should at least warn service members that their current prescriptions will be unavailable in the VA system.

This problem needs to be fixed immediately. A directive released by VA in late January seeking to address the problem without correcting the misaligned formularies contains too many loopholes and is totally inadequate. We need a solution, and not a patch. Chris Kyle’s death underlines the urgency of providing effective treatments for PTS. We can start by getting the Defense and Veterans Affairs departments on the same page.

Learn more about One Mind.

Read what the PatientsLikeMe community is saying about Peter Chiarelli’s article.