Ten years ago, a landmark clinical trial in Canada demonstrated the unequivocal effectiveness of brain surgeries for treating uncontrolled epilepsy, but since then the procedure has not been widely adopted - in fact, it is dramatically underutilized according to a new study from the University of California, San Francisco (UCSF).
The study, published this month in the journal Neurology, showed that the number of Americans having the surgery has not changed in the decade since release of the effectiveness study, though surgical treatment is now uniformly encouraged by neurology and neurosurgery professional societies.
The U.S. Centers for Disease Control and Prevention estimates that 2 million Americans have epilepsy. Hundreds of thousands of these men, women and children suffer from uncontrolled seizures, but nationally only a few hundred are treated surgically each year with UCSF performing about 50 of the operations.
Among people who do have the operation, the study found, there are significant disparities by race and insurance status. White patients were more likely to have surgery than racial minorities, and privately insured patients were more likely to undergo surgery than those with Medicaid or Medicare.
“As a medical community, we are not practicing evidence-based medicine with regard to the treatment of patients who have epilepsy,” said Edward Chang, MD, chief of adult epilepsy surgery in the UCSF Department of Neurological Surgery and the UCSF Epilepsy Center. “There are a lot of people who are taking medications and continuing to have seizures even though they can potentially be seizure-free.”
A MODERN SURGERY FOR AN ANCIENT DISEASE
Epilepsy has been recognized as an important neurological condition since ancient times and its name means “seizures” in Greek. It can be inherited or it can be caused by anything that injures or irritates the brain. Hippocrates, the father of western medicine, described it in detail in his writings some 2,500 years ago, and it is believed to have afflicted many famous people throughout history, including Julius Caesar.
I actually had a very good experience considering that I had four seizures the day before my surgery (Dec. 5, 1994) and haven’t had another since. However, the recovery was somewhat tough because I didn’t really know what to expect and I worried way too much about the possibility of having another seizure and how I would react should one have happened.
In retrospect, I’d have to say that I should have opened up more during the recovery process rather than held things inside of me. I simply didn’t want to be a bother to anyone and that philosophy was a mistake. Brain surgery is a very big deal and I think what weighs on a patient’s mind is that you can’t see it; you can’t feel it and you really can’t treat it following the procedure. That said, it’s such a mysterious experience and I discovered the hard way that while I would generally wake up feeling well, it didn’t take much time before I would start to get tired. However, rather than taking a break and maybe even lying down for awhile, I’d keep pushing things until I was literally exhausted.
Recovering from brain surgery actually took me about two years along with another year to get off Phenobarbital, but I didn’t want to admit to that at the time. I was too stubborn to listen to my doctors at Scripps and thought I’d take it upon myself to handle the recovery - and I would have been much better off simply calling my docs and chatting with them on a weekly basis rather than taking things into my own hands.
On a related note, I think I may be having a bit of a problem with regards to immediate recall although at the age of almost 62 (Dec. 21), I like to think that old age might be playing a part. Plus, I now have to remind myself every once in a while that even though the surgery took place almost 17 years ago, I lost five centimeters of my right temporal lobe, so there are bound to be some setbacks. The bottom line for me is that it was all worth the experience especially as I finally realized that the constant worry of having another seizure has been removed from my shoulders. While I never gave that much thought when I had epilepsy, I think that combined with the affects of the drugs undoubtedly hurt me more than I ever realized.
A short time after returning home from Scripps in La Jolla, Calif., I sat down and started writing a book knowing full-well that its finish could not be possibly completed for about five years because it was at that point that knew I would know that I had been cured and the surgery was successful. I wrote the book, re-wrote it several times and finally submitted it for publishing before “Through the Darkness: One Man’s Fight to Overcome Epilepsy” was published in 2005. Every once in a while, I go back and read the book along with some of the elements I have included on my own web site just to remind myself of a giant victory.
It wasn’t easy, that’s for sure, but I assure you it was all worth it. You just have to have faith and know your limits during the recovery period. And above all else, don’t ever be afraid to talk about your concerns with friends of family members. There are so many ingredients necessary to the recovery period and communication is certainly one of them.
UCSF is one of the world’s leading institutions involved in epilepsy research, with one of the few medical centers that has top-ranking departments in relevant areas: neurology, biomedical imaging, and neurosurgery.
I was having almost 200 seizures a day….I had brain surgery in 2008 and have only had one small one ver since….I was lucky to have found the best and (most caring) Dr. here in NJ…3 surgeons were from here in NJ and 2 came in from Cornell in NYC to perform my surgery…I speak to people now everywhere so that they can go on and not be afraid…Also to make people who do not have this disease know that you don’t have to afraid of people that do.
Paul Garcia, MD, director of the clinical epilepsy program and a study co-author, said that most patients referred to UCSF for surgical evaluation have had uncontrolled seizures for many years despite trying several medications. Research has shown that after the first two medicines fail, it is uncommon for patients to gain complete seizure control with medical treatment alone. Without control over their seizures, patients are at risk for physical injuries or even dying. Furthermore, the seizures often interfere with normal life activities such as driving, studying and working.
I had my surgery back on,,,,,,, either May 30 or June 1 of 2008. I was supposed to stay home for about 4-6 weeks for recovery, but decided to go back to work after about a week and a half. I was good, but would have a seizure still every now and then. One was pretty strong and caused my left fore arm and leg to wake me up feeling so sore, like it does when you over work your muscles at the gym. This has since caused my (tendons?) right fore arm to be in pain when twisting in certain ways or even just have a shooting pain hit really quick. I found that I am gluten sensitive now and since going gluten free, have been in even more control of my head and body. Part of my diagnosis was called Hippocampal Sclerosis and can be caused by gluten sensitivity over time. So that is that. Oh! and part of the success is that I was able to continue working and am now at the top of my field of work.
To see how widely this type of surgery has been used, Chang and neurosurgery resident Dario Englot, MD, PhD, accessed a national database of all of the surgeries across the United States for the last 20 years-a timeline centered on the Canadian study. They found that there has been no increase in the 10 years, even as diagnoses of epilepsy have increased along with the number of hospitalizations for seizures.
Part of the problem is awareness, both among patients and care providers, Chang said. New anticonvulsant drugs appear on the market often enough to provide physicians with new drug combinations for their patients to try. Brain surgery can be more daunting than having to swallow fistfuls of pills, even though surgery is much more effective for many people. The problem though is that new medications are not very effective if previous ones already failed, according to Chang. Epilepsy surgery in the modern era has been repeatedly shown to be safe and effective.