Anyone had Deep Brain Stimulation for Epilepsy?

Posted by mikaela24 @mikaela24, Mar 1 12:15am

Hi everyone! I’m new here, I went to Mayo a few weeks ago and I was suggested to get DBS because I have failed most medications and have already had 3 previous brain surgeries removing parts of my brain. I really want to better my epilepsy, but I fear the trauma of my past surgeries. Does anyone here know much about this surgery here?

Hi @mikaela24, welcome to Mayo Clinic Connect. While we wait for others to join the discussion, you may be interested in this video with Dr. Jamie Van Gompel, a neurosurgeon at Mayo Clinic. He explains how deep brain stimulation is being used to control seizures for some epilepsy patients.

DBS does hold promise, but I can understand your wanting to learn more from others about it first. What specific questions might you have?

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@colleenyoung

Hi @mikaela24, welcome to Mayo Clinic Connect. While we wait for others to join the discussion, you may be interested in this video with Dr. Jamie Van Gompel, a neurosurgeon at Mayo Clinic. He explains how deep brain stimulation is being used to control seizures for some epilepsy patients.

DBS does hold promise, but I can understand your wanting to learn more from others about it first. What specific questions might you have?

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I am mainly worried about how safe it would be for me as I've had 3 other brain surgeries. When Dr. Van Gompel met with my family and me, he explained it would be my best option as I've been dealing with epilepsy off and on since I was 18 months old. I then read his notes later and he said something about hypothalamic atrophy and how this can raise possibility of missing the target if I were to do the surgery. So I guess if the target were to be missed, would it be likely of something being badly damaged. I've already had a stroke and gained a learning disorder from 2 of 3 of my brain surgeries. I know that there is only a 5% of something really happening but I already have so much brain damage and don't want to go in for more. And for those who have done it, is it very helpful?

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Hi, @mikaela24 – it makes sense that if you felt traumatized by previous brain surgeries for epilepsy, you'd feel some fear at the thought of surgery to implant electrodes for deep brain stimulation (DBS). I applaud your taking the step of trying to find out more about it and talk to others who may have experiences or personal research to share. I'd like to introduce you to @babette @hopeful33250 @jakedduck1 @susan62 @leftlucy, who may have input for you on DBS as you consider the recommendation made to you when you were at Mayo Clinic.

Also, this Mayo Clinic information on DBS may be helpful https://www.mayoclinic.org/tests-procedures/deep-brain-stimulation/about/pac-20384562, if you've not yet seen it.

Will you share a bit more about the type of epilepsy you were diagnosed with and when you were diagnosed?

Liked by lynette1975

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@lisalucier

Hi, @mikaela24 – it makes sense that if you felt traumatized by previous brain surgeries for epilepsy, you'd feel some fear at the thought of surgery to implant electrodes for deep brain stimulation (DBS). I applaud your taking the step of trying to find out more about it and talk to others who may have experiences or personal research to share. I'd like to introduce you to @babette @hopeful33250 @jakedduck1 @susan62 @leftlucy, who may have input for you on DBS as you consider the recommendation made to you when you were at Mayo Clinic.

Also, this Mayo Clinic information on DBS may be helpful https://www.mayoclinic.org/tests-procedures/deep-brain-stimulation/about/pac-20384562, if you've not yet seen it.

Will you share a bit more about the type of epilepsy you were diagnosed with and when you were diagnosed?

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I have focal epilepsy throughout my temporal and frontal lobe. They explained it as focal epilepsy that was everywhere and my epilepsy was the perfect spot for this. I guess you could say they can't really explain the epilepsy. Focal Complex Partial Epilepsy Intractable Without Status Epilepticus was the final diagnosis.

Liked by Lisa Lucier

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