Community Forum Archive

The scarring in my brain

Thu, 04/09/2020 - 21:56
At a young age, so young I remember the experiences in daycares, I would have these so-called "headaches" at random times every few weeks. They continued this way for a while and I told my parents but we all kind of just pushed the idea to the side. It was not until I was nine years old, when I was seen vigorously spazzing on my bed, that we discovered there was truly something wrong. After that first hospital stay, I was told by many doctors that I don't have epilepsy, I have a different condition. So many MRI's, EEG's, CAT scans, PET scans, medication switches and new doctor visits; it was not until I was 15 that I was given a better response. My new doctor performed a Watta exam on me - which was, in my opinion, so fun - where they would shut down half of my brain for a short period of time. I was finally given a reasonable answer - I was getting thousands of simple partial seziures a year - I was told my left side was my dominant, however, I was also told that the scarring was on that half as well. They told me to prepare for surgery late August but then moved it to October for a new procedure - Laser Oblation. Two days before the surgery was supposed to happen, my parents sat me down in the living room to give me some news. My surgery had been cancelled due to denial of coverage by my insurance company, Aetna. It was one of the worst moments in my life... at the time. My mom was not taking that shit from any insurance company and did everything she could to fight it, one name she reached out to stood out in the books, and that name was Wayne Drash. This man just-so-happened to be a CNN reporter and when heard about our fight, he decided to step-in and help. I was on speaking on live TV twice to discuss my before and afters of the surgery; the line "Screw Your Aetna" really stood out in this interview. I met a new doctor who agreed to perform the procedure for free at North well hospital in Long Island. First, I had to be in the ICU for a different procedure. At 15 years old I had to get a Stereotactic EEG where there were wires physically placed inside of my brain to locate the exact spot of the scarring. Ten days spent lying in bed, meeting new nurses, getting sponge baths, answering questions, taking medication and doing a lot of game testing to see how my memory was doing; It was an extremely stressful and anxiety filling event, but also an interesting one. Four months later I was scheduled for the real surgery. This was the one I was most scared for, but by most scared I mean barley at all. I was so beyond excited to finally remove this beast from my skull. I was in and out of the hospital within two days, and eleven months later, when completing the procedure I was in an out in a day and a half. Between the two surgeries was the hardest part. I was still getting seizures, not nearly as much as I used to, but my brain was not fully cured. My anxiety levels shot and my depression began hard to cope with. Five months after the operation, I attempted to end my life. I spent ten days in a psychiatric ward and within a month of being let out, tried to finish the job again. I have since gotten the help I needed and made it to all of the goals I was hoping to by this year, however, it has not been easy at the slightest. Self-harm was a big struggle, as was substance abuse; when I found out I could not smoke simple marijuana, I began moving to drugs that would more-likely damage my brain more than it already has been. After the final surgery, I stopped with all of the harmful actions. I believe letting go of all these damaging objects helped end the suffering for good. My seizures have now dropped from hundreds a year, to maybe a dozen total and now almost a year later, I have not been to any hospital because of my Epilepsy. I am more than grateful to have met the people I did, and been given the parents I have to help me through all this nonsense and get me on my feet again. To anyone else going through similar situations, I wish you the best and hope to god that you are given the treatments you need to escape from these miserable auras. Epilepsy may not be cancer, but it sure can feel just as life threatening as it and should never be taken for granted by you or anyone else around. Good luck to all struggling, know that you're never alone.

Comments

Hi Cara,I like your story

Submitted by birdman on Fri, 2020-04-10 - 08:45
Hi Cara,I like your story about looking forward to brain surgery.  I had this experience back in the early 1990's where I went through lots of testing and discomfort before they operated.  I was so optimistic and hopeful going into that surgery.  Isn't that a crazy experience!  People talk with dread about having to go into surgery.  It sounds like you were optimistic about it, and then depressed when insurance said, "no".  I'm glad a doctor was willing to help make it happen.  It's unfortunate that the operation did not stop the seizures.  My first surgery did not either.  But the way I like to think of it is that if I had not gone through with the operation I would have seizures and still live with the question if I should proceed to have tests and get a doctor to perform the surgery.  I would live with greater uncertainty about what treatment to pursue.  Surgery may not fix the seizures, but it can be a step toward managing them.  I'm glad your making progress.Mike

Hi, Thank you so much for

Submitted by Anonymous on Fri, 2020-04-10 - 09:18
Hi, Thank you so much for posting and for sharing your experience living with epilepsy and undergoing surgeries, it sounds like you’ve been through a lot. We are glad to hear that you were able to receive additional care for your anxiety and depression and that your family has been a strong support system for you. Being diagnosed with epilepsy can be upsetting and make you feel isolated and alone, it’s important to remember that you are not alone,and we are here to help support you. We understand that living with epilepsy is more than seizures, it also means learning how to handle the way epilepsy affects your life including your physical well-being, social and emotional health. https://www.epilepsy.com/living-epilepsy/healthy-living/emotional-health . One of the most important things to help you live with epilepsy is to find a support network. The Epilepsy Foundation has many resources available that can help you find and build upon your support network. Contact your local Epilepsy Foundation, here: https://www.epilepsy.com/affiliates , or contact our 24/7 Helpline:1-800-332-1000, contactus@efa.org, where trained information specialists are available to answer your questions, offer help, hope, support, guidance, and-access to national and local resources, epilepsy.com/helpline 

Dude, I know that feeling. I

Submitted by Misjoey101 on Sat, 2020-06-27 - 01:20
Dude, I know that feeling. I was born with epilepsy. Doctors told me they could cure me with a brain surgery when I was 11. I was counting down the days to that surgery. After the operation, I was counting the weeks and then months I went without seizures. After 9 months, I had 3 seizures in one day and the surgeon basically told me he missed a seizure hot-spot on the other side of my brain. He couldn't "cure me". Pushed me into a black hole. Depressed for months after that. Almost suicidal. The fact that it was all happening during puberty and on Keppra probably didn't help but, I started seeing a therapist and made it. 

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