A Surgery Success Story: Interview with Miriad Kavanagh

On January 4, 2007, Miriad Kavanagh went forward with surgery to control seizures that she had been having since she was 11 months old. Now in her 20s, she had the courage to go through with the operation because of the support she received from her friends at epilepsy.com. With her on-line community, her determination, and her faith -- after a lifetime of seizures -- Miriad took control. Here is her story.

“I wrote in my diary: Dear Diary it is 1:50 AM on the morning of the surgery, the 4th of January, 2007. I can't really sleep. Most people are text messaging me. The night is never ending and I wish it would. . . The wind is howling outside my window -- a horrible lonely sound when the whole hospital, except staff are all asleep, and whatever patients happened to be awake.”

For Miriad, the decision for surgery was made slowly and deliberately. She had been thinking about surgery and then she heard a young musician speak about getting her epilepsy under control on the radio. She contacted the musician and was put in touch with Orrin Devinsky, MD. Although Miriad pointed out, “Since I was in Ireland, and he was in New York, seeing him was too complicated. But he was encouraging and I wrote to inform him that my surgery was successful and to tell him how much the epilepsy.com community supported me.”

Seizures seemed to have been a part of Miriad’s life. “When my seizures became more severe as I grew older, a neurologist told me I was having panic attacks. That’s when I said to him, ‘If you saw see me having a seizure, you would know they are not panic attacks.’ I demanded a second opinion and I was referred to one of Ireland’s top neurologists, Dr. Norman Delanty, who happened to have been trained in Canada. Within a year, he diagnosed that I was having complex partial seizures.”

Sometimes her seizures came about unexpectedly, but gradually Miriad recognized that an aura and a taste in her mouth preceded her seizures. As such, she would leave the room so that she didn’t become embarrassed or draw attention to herself. “But one time, I was working at the check-out counter in a grocery store. I had a seizure and went into some type of trance. When I came out of it, the woman who I was serving at the time said to me, ‘Do you know you just took a bite out of my broccoli?’ Yet people always were very understanding.”

“My family was all very supportive. On my third visit to Lourdes in September 2006 with my Mum I prayed that I would be a suitable candidate for the surgery. I had been there two other times and I prayed that I would be a suitable candidate for the surgery. My aim was to go into the Baths before my surgery. And I did. I have a deep devotion in my faith to Our Lady and I believe she helps me a lot. My Aunt died before Christmas and I truly believe that my grand aunt, my aunt, and grandmother were all looking down on me. My Mum had told my Aunt before she died that I was due to go into hospital for the operation and she asked her to pray for me and she said she would.”

With regard to surgery, what was the risk that was most frightening to Miriad? “For me, I was most afraid of having a stroke, and also the possibility of memory loss. I write everything down, so I can remember things. It is a tiny bit worse since the surgery, but my main memory is on the right side. I didn't know how I was able to store most of my memory on the right, but I did, and so I wasn't as dependent upon the left side.”

Making friends with those on epilepsy.com helped put Miriad’s mind at ease. “When I first began talking about having surgery, I was told many things that were not true such as that I would have to learn to walk from scratch, or that I might never walk again, or that I would be paralyzed, or have a stroke. But the on-line community really helped me. One friend had the surgery, but she had it on her right side and I was having it on the left. They were all very worried about me and they were all there for me. I was calm because of them.”

“And I knew that I wasn't the only one going through this. And I didn’t feel alone. In addition to my friends at epilepsy.com, I have my prayer group, Youth 2000, and they were praying for me. I would also have to thank the Irish Epilepsy Association: they were also very supportive and it was through them that I was put in touch with a lady who had a successful surgery also.”

“But once I made the decision, I started gathering all of the information about the Wada test, the PET scans, and the surgery itself. I knew I had good doctors and I was going through with it. And my friends and family were all there for me. They came to visit every day and they constantly kept in touch with me.”

“Now I just want to go back and lead a normal life. I practise Taekwondo. So I am not all that dissimilar from Chanda. I love sports and Taekwondo is one of the sports I love practicing as it relaxes me. I competed in the World Championships a few years ago and I came third in my category. But now I must wait for one year after the operation. I also practice Yoga and that helped me when I was having seizures.”

“Now I have been seizure free for five months, the longest ever. Today, I am happy to share my experiences. My blog is called Raid’s Blog on epilepsy.com. I hope this link will help others,” she concluded. Dr. Devinksy, whom Miriad contacted, said, “Miriad’s story is so inspiring. We are so pleased she chose to share it with all of us. One of the most challenging things for a physician, in discussing the risks and benefits of epilepsy surgery, is the personal side of the entire process -- from decision making to surgery to recovery. The best source is ultimately another person (or people) who have been down the road. This sharing of experiences is incredibly powerful and informative; a critical supplement to the neurosurgeon's and neurologist's perspectives. Epilepsy.com is in a unique position to help facilitate these interactions.”

To read Miriad's blog, please go to http://my.epilepsy.com/?q=blog/12637

Edited by Steven C. Schachter, MD