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Old 03-24-2005, 07:19 AM
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Complex partial seizures, and auras


Hi, my name is Cindy, I had complex partial seizures for over 28 years of my life. In June of 2002 I had epilepsy brain surgery. about a year before my surgery, I had went for a doctors visit with my neurologist here in Tennessee, I was in hopes that there would be a new medication that might help me, but I was at the end of the road, I had already tried every med. there was for seizures, and none of them worked for very long, until I would have a breakthrough seizure. My neurologist said that complex partial seizures were the hardest to get undercontrol. My neurologist sent me to the Universtiy of Va. in Charlottesville Va. where my new journey started. I spent 10 days in the hospital undergoing extensive testing to try and locate the area of the brain my seizures were coming from. after having at least four seizures the team of neurologist and surgeons walked into my room with a smile on their face, they said we have good news we have pin pointed the area of the brain where the seizure activity is coming from. I had a mass of scar tissue on the right side of my brain that was causing the seizures. They told me I had a 70% chance of being seizure free with the surgery, I knew this was an answer to my life long prayers, and that I had to do it. So on June 11th 2002 I underwent brain surgery (6 hours) and today I am seizure free. I have had a couple of auras, but no full blown seizures.
I am a H.O.P.E. mentor for the Epilepsy Foundation here in Northeast Tn. I am going to schools and giving epilepsy awareness presentations. Our teachers and students need to know what to do if they see someone have a seizure and what not to do. Teachers can help other students in their learning if they know what is going on with the student.
I am also in the process of trying to get some assistance in going back to school, I want to get my associates degree and go into cardiovascular tech. or maybe medical billing and coding. The voc rehab is trying to help me get assistance in going back to school and be able to work again in over 17 years. I want to pick the best job that will not cause to much stress in my life, allowing the seizures to come back. God has been good to me and He has given me and an awesome opportunity to share my testimony of God's faithfulness in my life. Even though I would have never chosen the road that God allowed me to go down, it has made me the person I am today, Strong! Though my memories of my darkest days still linger, God is showing me the light through His eyes.
MY faith is strong in the Lord, even though I don't know what tomorrow promises, I know that I can trust God to see me through.
I wish the best for you and that God will give you strength each day to get through this time in your life.

Many Blessings,

Cindy/mercyme :)
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Old 03-24-2005, 08:17 AM
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Welcome to the forum Cindy!


It is hard for someone who has not been affected by epilepsy to understand how anything could make the prospect of brain surgery palatable, much less appealing, but it is good to hear that, in your case, there was a specific identifiable cause that could be localized and removed safely. You are coming up on your 3rd anniversary of the surgery without a seizure. That sounds great! Congratulations.

I have seen several of your posts at the Epilepsy Foundation's forum and you are a very kind and sympathetic soul. Thank you for joining us here and introducing yourself. I suspect Stacy will be humbled by your story and gain some perspective on her own situation (hint, hint, wink, wink).

Can you tell us a little bit more about the H.O.P.E. program and how to get involved?

I did a quick check with Google for the least stressful jobs. I found a page claiming they are (according to the Jobs Rated Almanac):
  • Medical records technician
  • Janitor
  • Forklift operator
  • Musical instrument repairer
  • Florist
What causes stress?

Sounds like you have picked a winner. I would have guessed jobs that allow you to create stuff (carpenter, landscaper, artist, writer, etc.) would have topped the list.
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Old 03-24-2005, 12:31 PM
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Re: H.O.P.E. Mentorship


Hi Bernard,

The H.O.P.E. mentor program stands for Helping Other People with Epilepsy, this educational program trains people with epilepsy to be "Patient educators" throughout the epilepsy and neurology communities. The best way for you and your wife to get involved is to contact your local epilespy foundation. I do volunteer work for the Northeast Tennessee Epilepsy Foundation. We have just started a support group in the tri-cities which is a big help to everyone that has epilepsy and also great for those who are caring for someone that has epilepsy. There is a fundraiser this summer in Knoxville Tn. a mud volleyball tournment sounds like fun huh? I hope to get to go to that with my daughters, I will put them in the mud, lol. I want to form a epilepsy walk fundraiser in a near by park this spring.
I think you would be a great H.O.P.E. mentor, it sounds like you have done your homework. If you would like to call me, my number is [censored] I would be happy to talk to you about the program, or any questions about my brain surgery that you might have.

Many Blessings,

Cindy/Mercyme
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Old 03-24-2005, 04:07 PM
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H.O.P.E. program from the Epilepsy Foundation


Thanks Cindy, I actually met Shannon with the Southeast Texas chapter of the Epilepsy Foundation at the VNS Therapy seminar the other night. I'll follow up with her.

I edited out your phone number from your post. It's not a good idea to publish direct contact info on the public internet. You should use PMs (private messages) for that. Thanks for the offer!
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Old 03-28-2005, 09:59 PM
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Hey Cindy!

It's nice to meet you, and I wanted to know if you actually get paid for going to the schools? I know you wanted to do something stress free, so is it working as a stress free job????

Stacy
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Old 11-08-2007, 11:00 AM
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Hi Cindy,
Thank you for sharing your story. My 16 year old daughter was recently diagnosed with complex partial seizures. I know we have a long road ahead of us. Information is coming at us so quickly. Thanks for the great info on H.O.P.E., I'm going to check into it right away.

God Bless,
Kim
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Old 11-08-2007, 11:39 AM
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((((((( CINDY )))))))))



So glad to see you over here!
Welcome to the CWE!



You know me as Southie in EF!
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Old 11-08-2007, 09:05 PM
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hi Cindy,
I have complex partial seizures & simple partial seizures.... right now im fighting a infection in my kidneys....so i wont be on that much if at all for a few...but would love to talk to you some time...
im taking keppra and so far its been almost two months since ive had a seizure sept 23 i think was my last one...

love angel
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Old 11-09-2007, 09:41 AM
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is cindy still around i noticed the post is from 2 years ago?
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Old 11-09-2007, 12:32 PM
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Looks like she has not logged in over 2 years now. No telling if she is reading as a lurker/guest.
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