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My Journey with RNS Surgery: Hope for Seizure Freedom

Soo’s Story

Living with epilepsy is a challenge, to state it mildly. We go through each day hoping we won’t have another seizure, and yet they come. Finding the right treatment is the big question mark. Since there are so many types of seizures and epilepsy syndromes, epilepsy is extremely difficult to deal with. But despite our challenges, especially in these times, I still think there is reason to hope.

Evaluating Surgery Options for Epilepsy

It has been a long time coming. I have been evaluated for brain surgery several times over the years, and the answer was always “no.” I have focal seizures, coming from the temporal and parietal lobes. In the past, the foci were too scattered, so that disqualified me as a surgery candidate. This time around, I had two options. First, if there was a clear focus that could be taken out safely, they would do a resection. If that could not be done, they would implant an RNS. When they evaluated me, the first option was thrown out, so I went with plan B.

VNS vs RNS

Six years ago, I had a VNS (vagus nerve stimulator) implanted; however, it did not work. Thanks to the latest in medical technology, I have another chance. I got the RNS (responsive nerve stimulator) implanted in June this year. Originally, I was going to have the surgery last year in November, but at the time the hospital was waiting for a robot to assist in the surgery, and it had not arrived yet. When the robot did arrive at the beginning of the year, the challenge was then getting a hospital bed. The date that was available was in March. Then COVID-19 hit. I had to wait another three months before they gave the okay to proceed with the surgery.

Surgery Recovery

The surgery itself went rather smoothly. I was lucky because I was allowed to have one visitor. Soon afterward, the hospital changed its policy and did not allow any visitors, not even family. The first part, where they put electrodes in your head to find exactly where the seizures are coming from, was not bad. I had no pain whatsoever. I was good to go and let my brain recover for step two, which was the implant. The interesting thing is, during the recovery time, I had a string of seizure-free days.

The second part was much more difficult. They downplay all the risks of surgery, saying there is only a 1-2% chance of something going wrong. However, it was scary when I needed to wear an oxygen mask after my RNS was implanted. I was in the ICU for two days. I consider myself very lucky, however. There have been cases of infection during an RNS surgery, and it is not a pretty picture.

When I got home, for two weeks, I suffered horrible headaches and was on a diet of yogurt, soup, Tylenol, and the tender loving care my family gave me. This was what really sustained me throughout my recovery. I could not have gone through it without them. All the TLC I received from them more than made up for my physical pain. Just the fact that they were there giving me care and attention, made me feel special.


RELATED: Living with RNS and VNS


Support from the community

I have a good network of support from my community. The epilepsy community in Orange County, California is very strong. We have a wealth of resources here, including excellent epilepsy centers and support groups. They all advocate for our health and well-being, in the pursuit of the end goal: seizure freedom.

Resources

Epilepsy Support Network of Orange County

Epilepsy Foundation of Orange County

 

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