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SEEG and possible surgery for my daughter

A MyEpilepsyTeam Member asked a question šŸ’­
Peoria, AZ

My daughter is 22 years old and has epilepsy, (she was in an accident when she was 17 yo with concussion and started having seizures since then)

First medicine that the neurologist put her on was Keppra, which she took it for one month and had to stop taking it because of a lot of anger issues and mental health problem she had.

Started to see a great Epileptologist at Barrow neurological Institute and he put her on lamotrigine
It helped with her grand mal seizures but she still had at least oneā€¦ read more

July 20
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Answer Summary

Members rallied around a parent's heartfelt question about whether SEEG testing and possible brain surgery was the right choice for their... Read more

Members rallied around a parent's heartfelt question about whether SEEG testing and possible brain surgery was the right choice for their daughter whose seizures are currently controlled by medication but who suffers significant side effects and quality-of-life struggles. Several members shared their own SEEG experiences, with one describing a successful surgery that led to nine years of being seizure-free and another sharing that surgery did not reduce their seizures but they still had no regrets about trying. A recurring theme was that outcomes vary from person to person, and that having thorough testing done to get a clear yes or no answer is a worthwhile and empowering step.

A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member
I have had the SEEG myself. The doctors did slowly take me off of my medication but with my drug resistant seizures that didnā€™t seem to do much. Iā€™m always depressed and have thoughts of suicide. After I had the SEEG I got the Vagus Nerve Stimulator (VNS) and Neurostimulator (RNS) but neither one helped with my seizures. But even though I went through the process and had the surgeries I donā€™t regret trying. It works for some people but not for others. Hereā€™s a picture of me during my SEEG.

July 20 (edited)
Hi, this is just a check-in, based on a phrase you mentioned. If you ā€” or anyone else who sees this ā€” is thinking about self-harm, we want to say that you are an important part of this community. No part of this is easy, but there is support that can help. Read more >
A MyEpilepsyTeam Member

Thanks for your hug Sean!

July 25
A MyEpilepsyTeam Member

Drill holes in your head?! Hmmmā€¦

July 21
A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member,
I'm sorry for what your daughter is going through, has she informed you her feelings as far as this.
I went for years being told from testings I went through that surgery would never be possible. When saw another Dr. who worked with me which didn't help as far as my seizures, asked if I was willing to go to the National Institutes to try a new a new med., afterwards I could go through a test surgery to find if main surgery could be done. I was willing, just wanted to hear a final yes or no. Surgeries or meds. are not always worth it, but thankfully I could go through main surgery and was seizure free for 9 years. Now I have them very seldom and more mild than in the past. It's not the same for everybody, I wish the best for what ever is decided for your daughter.

July 21
A MyEpilepsyTeam Member

Iā€™m not even eligible to have surgery because both of my hemispheres are infected.

July 30

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Wondering if my daughter goes for the surgery on September or not

A MyEpilepsyTeam Member asked a question šŸ’­
Peoria, AZ
July 19

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