Vinay Jani, from Delhi has been living with epilepsy for over 15 years and was recently declared drug resistant by his neurologist. As a result, he was advised to go for surgery. He has been living a seizure-free life for over a year now post-surgery. He shares his experience.
You say you had drug resistant epilepsy. Please explain.
In some cases, seizure is not controlled, despite changes in medication. When my seizures kept recurring, my neurologist Dr. (Prof) Manjari Tripathi tried many AEDs (anti epilepsy drugs), almost 20 to 25 AEDs from 2016 to 2019. But my seizures could not be controlled. After 3 years she told me that my epilepsy was becoming drug resistant.
As my seizures could not be controlled, my neurologist advised me to think about surgery and also advised me Video-EEG, MEG, Contrast MRI and Functional MRI which was discussed with Dr. (Prof) P Sarat Chandra to check my eligibility regarding surgery.
Read part 1 of Vinay Jani's narrative here
Was surgery for epilepsy a difficult decision for you?
Since my epilepsy became drug resistant and I was eligible for surgery, I had two options: to continue with my life of seizures, or go ahead with the surgery and look forward to a seizure free life. My first option would have left my nerves weak with age, and would have consequently left me ineligible for a neurosurgery later in life.
My neurologist Dr (Prof) Manjari Tripathi and neurosurgeon Dr (Prof) P. Sarat Chandra both gave me a brief about surgery and the prospect of a better life after it. I started speaking about epilepsy in 2019 through my social handles which helped me to connect with other patients. So I did speak to them if they were getting an option of surgery.
Must Read: Is epilepsy surgery a safe option?
What is your experience, post-surgery?
Its been 11 months now. I'm living a seizure-free life though withdrawal of the medicines is expected to start after 1 year.
When did you resume your physical activity after your surgery?
At the time of discharge my neurologist advised me to avoid running, cycling and gym workout for 6 months as internal recovery takes some time. I resumed my workouts slowly and gradually after 6 months of surgery. I participated in Vedanta Delhi Half Marathon after my surgery to spread awareness on SUDEP (Sudden Unexpected Death in Epilepsy) as the event was 3 days before the International SUDEP day.
You had mentioned earlier that lack of sleep has been a problem with you and a possible trigger for your seizures, has that changed now?
Post surgery, medicines are giving me deep sleep now.
I’m living a much better life after surgery.
What is your daily life like now?
My quality of life has become much better now. I feel more independent and productive now, and also less stressed. Also, now I can plan my days in a better way as it's been more than a year that I am living a seizure free life.
What is your present treatment like?
Presently I'm taking the same medication which I used to before my surgery but I'm hoping that my withdrawal of medication will start soon.
Is the surgery a long time solution?
Yes, surgery is always looked at as a long time solution.
How did you convince your family for surgery? Is your family relieved now that you are seizure free?
My neurologist Dr. (Prof) Manjari Tripathi had an open conversation with my family regarding the benefits of the surgery as further medication would not have helped me any more. In fact, I was more likely to suffer side effects of the medication in the long run. Yes, my family is much relieved now that I'm living a seizure free life.
Is there anything you are worried about?
Unnecessary worries take a person nowhere. It is always better to look for a solution with an open discussion with your concerned neurologist in a positive way.
As told to Moyna Sen
