Our post-surgery support group has provided friendship, guidance, education and support. Ten to fifteen people attend this group at a time, and it is open to all those who are at least 2-3 months post-surgery, seizure free or not.
Patients shared excerpts of their stories to help other potential surgical patients through the post-surgical road.
Pain shared is pain halved
1. “After so many years of feeling isolated, I found a group that does understand and can respond to the experience of having epilepsy surgery. A special bond has developed where we share information, coping strategies, and help each other keep a positive attitude.”
2. Feelings can intensify after surgery. “Will I have a seizure?” “Will my memory be okay?” “Will my medications decrease?”
“After so many decisions, tests and procedures prior to surgery, I needed help to rebuild my life after surgery. Some important issues for me included driving, memory concerns, employment and health insurance. Most importantly, just being heard! Some of us have enjoyed greater seizure control than others but we are there to share the good and the bad.”
3. “I was teased and ashamed of my seizures, so I did not complete high school. I was alone much of the time, fearful of having a seizure and had low self-esteem. Post-surgically I am more and more comfortable, supported and productive. It takes time but I keep working at it.”
4. “I am now seizure free for 14 months. I never let my epilepsy control me, although it was hard sometimes. I am an occupational therapist and enjoy helping others. In some ways epilepsy helped me to try harder and to be who I am. The post-surgery support group helps me to cherish each day, educate others and receive love and support. We all really understand each other.”
5. “Doctors see the inside of the brain, but not the adjustments needed after surgery. The first year post-surgery can have its challenges, as surgery can’t fix everything! Social issues were hard for me and I yearned for those who could understand. People who go through this surgery really understand. After two surgeries, and controlled seizures, I am feeling more comfortable and safer in social situations and I am working!” Scott
6.”My fellow group-mates taught me how to remember things by keeping journals, writing cliff notes, and using electronic devices. It’s good to have people to travel with on this journey. I am not alone. I became a mom recently, a goal I didn’t know I could reach!”
7.”Life is one big circle. Life was pretty great growing up, no worries, only fun. Seizures affected my life and I had some pretty chaotic times. School and relationships were pretty difficult, as were family relationships. Things are getting better with the help of computers and I have returned to school. Life is starting to get back to beginnings again.”
8. “I was 18 years old when my seizures began. I have never really let it get me down, but having seizures after surgery was difficult. I would do it all over again, as how would I ever know? I have 2 beautiful children, although my house is like a fortress. Every precaution is taken and we have a safe household. With the help of education, medical alert bracelets, safe strollers and lots of love, I do not have to live in a cocoon with my children. People with epilepsy should be active, contributing members of society, just like everyone else.”
9. “I had surgery in 1964. There was no one to talk to at the time before or after surgery. The benefits of a support group and a comprehensive medical team are a long awaited welcome to me. Burdens shared and understood are bearable burdens.”
10. “My life changed at age 30, when I was diagnosed with temporal lobe epilepsy. My behavior (told to me by others) made no sense to me. I needed help. After several medication trials, and lots of counseling, I did have long term monitoring, a Wada test and surgery was recommended. Surgery proved to be successful in controlling my seizures but I didn’t know how to move on with my life. Having gone to other support groups I recommended it to my social worker. Proudly, it has helped me and others to feel connected!”