Mistaken ideas keep many away from surgery
In the United States alone, hundreds of thousands of people have seizures that are not well controlled by medication. A quarter to a half of these people are candidates for epilepsy surgery. Yet the number of operations performed continues to be small. Why do so few take advantage of a treatment that is likely to greatly improve their quality of life?
False impressions of epilepsy surgery
The biggest barrier seems to be misconceptions about epilepsy surgery. One recent article (1) reported on the views of some small groups of people with uncontrolled epilepsy (and parents of teen epilepsy patients) in California. Most of these people described having problems with jobs, school, and social situations -- problems that they felt arose at least partially from side effects of their seizure medicines. They were frustrated with trying new combinations of medicines. The teens and their parents described a dependent relationship in which the parents were in charge of the medicines.
Nevertheless, many expressed negative attitudes about epilepsy surgery. They thought of it as an experimental procedure with great risk. They were worried about extreme bad outcomes and were willing to put up with a lot of problems before even considering it. Only about half the people with epilepsy said they would consider surgery. The parents were unwilling to make the decision for their children.
Another troubling aspect of this study was that most of the people in these groups did not think that they were getting good information from their doctors. They felt that they were getting inadequate advice about medicines and consistently negative information on epilepsy surgery, focusing only on the danger of lasting physical and mental handicaps.
Some reassuring facts
In 2001, the first randomized, controlled study (2) comparing epilepsy surgery to treatment with seizure medicines was published. The study followed 80 patients with temporal lobe epilepsy for 1 year. Half (40) of them were immediately evaluated for surgery, and 36 of that group underwent an operation. The other 40 continued to take seizure medicines under the supervision of skilled epilepsy specialists. After a year, 58% of those in the first group were free of disabling seizures, versus only 8% in the other group. (Actually, 64% of those who had surgery were free of disabling seizures, disregarding the 4 patients who did not have an operation.) All the patients in the surgery group who continued to have seizures had fewer of them. Only about a third of the other group had fewer seizures than at the beginning of the year, despite changes or increases in their seizure medicines.
The patients who had undergone surgery not only had fewer seizures than the others, but also scored significantly higher on measures of their quality of life, and more of them were employed or going to school at the end of the 1-year period.
And what about the severe bad outcomes that cause so much fear in both patients and doctors? Of the 36 patients who underwent surgery, 4 had adverse effects but only 2 of those caused lasting problems (declines in verbal memory). On the other hand, one patient in the group taking medication died suddenly -- there are no guarantees.
What now?
Certainly brain surgery should not be taken lightly. But the excellent safety record of epilepsy surgery is well documented and continues to improve. In addition, new neuroimaging techniques are reducing the need for invasive diagnostic studies before surgery, lessening risk, discomfort, and cost. (In the study discussed above, for instance, subdural electrodes were used to evaluate only 1 in 6 of the patients who had surgery.) The cost (mostly covered by medical insurance in many cases) is small compared to the cost of a lifetime of disability.
Not everyone can be helped by surgery, of course. Only specialized testing at an epilepsy center can determine whether an individual is likely to benefit. But first, people with epilepsy and their doctors need to recognize that epilepsy surgery has a good safety record and offers many their best hope of freedom from serious disabilities.
Some epilepsy centers now are studying whether people with epilepsy will benefit even more if surgery is not treated as a last resort. Studies (3) have shown that if one or two carefully chosen seizure medicines have failed, it's unlikely that a different one or a combination will work much better. Instead of spending year after year with disabilities while the doctor prescribes various combinations of new medications, people whose epilepsy does not respond to seizure medicines may be able to resume a full, satisfying life after surgery.
This issue is especially important for children, who may miss out on critical educational, social, and psychological milestones while waiting to find the "right" medication. Many psychological and social consequences of disabling seizures in childhood are irreversible. Patience may not be a virtue for the doctors and parents of children who could be helped by epilepsy surgery.
Articles mentioned:
- Swarztrauber K, Dewar S, and Engel J Jr. Patient attitudes about treatments for intractable epilepsy. Epilepsy Behav 2003 Feb;4(1):19-25. PMID: 12609224.
- Wiebe S, Blume WT, Girvin JP, and Eliasziw M, for the Effectiveness and Efficiency of Surgery for Temporal Lobe Epilepsy Study Group. A randomized, controlled trial of surgery for temporal-lobe epilepsy. N Engl J Med 2001 345:311-8. PMID: 11484687.
- Kwan P, Brodie MJ. Early identification of refractory epilepsy. N Engl J Med 2000;342:314-319. PMID: 10660394.