Pritam's Story

Pritam Bhavsar
Pritam Bhavsar My name is Pritam. I am not an epileptic patient but my sister Prajakta is… from last nine years. She started getting the epileptic attacks when she was 17. We all were shattered to know when she became an epileptic patient because we had never thought that someone in our family would ever suffer from Epilepsy. Also, there was no such medical history in our family in either side of our close ancestors. Initially doctors thought that the 4–5 years of the regular medication would suffice to cure her. Neurosurgery was another alternative but we preferred the option of 5 years medication over the painful and costly Neurosurgery. After starting with the medicines she started getting the “Absense Seizures”. Medication had reduced the intensity of the seizures a lot, so we thought she will surely get cured with the current treatment in 5–6 years. But god wanted to test our patience. There was no significant improvement, although she didn’t get the major attack in seven years, the frequency of the “Absence attacks” had increased a bit along with little hyperactivity. Just like most of the Epileptic patient, she too was living a quite pathetic life which was full of restrictions–no traveling alone, no driving and limited outdoor activities which caused her to loose all her friends and Epilepsy had started showing its psychosomatic and darker side.

After seven years we were quite worried as there were no sign of improvement, rather she was ‘rewarded’ with addition of one more tablet in her daily dosage which further lead us to frustration. At that time the seizures was not our only concern, we were also greatly concerned about her future and the social life ahead. We realized that Epilepsy is not only a physical disease; if it is not handled properly it greatly affects the mental health of the patient and creates the social stigma for the patient and their family members.

Finally, after eight years we consulted one reputed Neuro Physician in Pune. He suggested us to go for to Trivandrum to consult to Dr Radhakrishnan who practices at Sree Chitra Tirunal Institute for Medical Sciences & Technology (SCTIMST). I knew neurosurgery was recommended to Prajakta, so I had to take a call. I started gathering more information about SCTIMST and neurosurgery over the internet.

At, I stumbled upon “Yasho Wakankar’s Story”. She had also undergone the similar surgery at the same hospital and the best thing about her was that after her surgery she was living seizure free like and had also started an NGO called Sanvedana Foundation– a self help group and the consulting centre for epilepsy patients and their families. Yashoda’s story was very inspiring; she was the perfect person for us that time. We decided to consult Sanvedana. In the first visit itself my view towards the epilepsy has completely got changed. All of our doubts regarding the surgery and SCTIMST were cleared in the first meet itself. After seven years we were seeing some ray of hope for Prajakta. We had someone with whom we could easily share and discuss all our worries and problems. We came to know that the neurosurgery for epilepsy is not that risky if it’s done at some reputed hospital like SCTIMST. And considering the success rate of SCTIMST (we heard it’s almost 100%), we decided to go to Trivandrum. Sanvedana helped us get our appointment scheduled quickly at SCTIMST.

At SCTIMST, we met Dr Radhakrishnan & Dr Ashalata, they were very happy to know that we had come through Sanvedana. As expected, Prajakta was admitted for a week for Video EEG test. After spending seven long days for VEEG test, doctors diagnosed that Prajakta was a probable candidate for surgery; surgery had to be done on her brain (Left Anterior Temporal Lobe). Three months later Prajakta underwent successful neurosurgery. The surgery lasted for about 8 hours. After the surgery she was kept in ICU for a day and then she spent 7 days in the Epilepsy ward at SCTIMST under the observation of expert doctors and the nurses. Doctors told that she is now out of danger and is expected to have good outcome in the seizures frequency. First one month was extremely difficult and painful for Prajakta. But she know that “pain is the weakness leaving the body”, and that would pass too. Gradually, after two months all of her pains were gone and so were her seizures.

Today, its 1.5 years since Prajakta underwent the neurosurgery. There was only a single occurrence of the seizure since then, but as per the doctors it was expected and there was nothing to worry about. 3 months after the surgery Dr Radhakrishnan gave her a ‘clean chit’; he also gave her permission to drive the vehicle. I think that was the most beautiful moment in our life in last 9 years. I could see the loads of happiness on Prajakta’s face. Her confidence level was boosted like never before. For her further improvement, we brought her to Pune to let her start a new innings in her life. So, only 5 months after the surgery, Prajakta started staying with me in Pune. Initially, it was very difficult for all of us. She was staying alone at home. We took all possible safety measures when she stayed alone at home. Every another hour my mom and I used to call her to check if she is ok and safe. But on the other hand Prajakta was completely enjoying her new innings. Slowly, we started reducing the phone calls and gave her the independence in some sense.

Neurosurgery had completely changed Prajakta’s view to see and live the life. We saw good positive changes in Prajakta only 6 months after she got shifted to Pune. I decided to give her the chance to explore the world on her own. Cooking and household stuff was not new for her but I realized that like most of the epilepsy patients, she too was not so good in planning and decision making front. As per Yashoda’s suggestion, I decided to give her the full responsibility to manage our household things including budget and all. It was very difficult for her for first couple of months but then slowly she started learning it and has now become an expert ‘house girl’. I believe women are naturally good planner. She now manages everything in our home without a single help from anyone else. Of course, except the financial help.

After spending couple of months at home in Pune, Prajakta surprisingly showed interest to join a small computer course. I happily got her admitted for the same. She had started getting socialized. She already had made some new friends in our society. Happiness was everywhere. As if she was getting rewarded for her patience and hardship over the period of last nine years. Side by side, we were also visiting Sanvedana’s monthly meets regularly. Yashoda has now become a very good friend of mine; and Sanvedana… a new family.

Today, it’s almost one year since Prajakta got shifted to Pune. Something which had not happened with the medicines in last 8 years has happened in last single year. We are extremely happy for her progress. We are now planning to get her employed and truly make her independent in all the sense. And I know it’s not impossible if Sanvedana is there with us. I believe, the superb treatment at SCTIMST, consistent guidance and moral support from Sanvedana gave us chance to see these good days. It’s nothing less than a miracle for us!!!

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