Is Turning on a DBS right after surgery implant bad?
My sister has suffered from 3 types of seizures for 30 years. She has a VNS and it helps a little. On January 15th she had a DBS implanted and a lead came off she had to go back in the next day to have it reattached. We believe that at that time they turned the DBS on. With no time for the brain to heal. She has been in rehab and now back in ICU. They had to do a MRI, but before that they came in and said they had to shut DBS off, but they told us day of surgery that it would be 3-4 weeks before it was turned on to let brain heal. What do we do? Please help!
Interested in more discussions like this? Go to the Epilepsy & Seizures Support Group.
Hi @brotherofepilepsy
I am very very sorry for your sister and can well imagine what you have been through.
Unfortunately, I can not add much to your sister's situation. But as I mentioned in other posts, yesterday I saw a movie based on a true story called "Lucca's World." It is about Lucca, who has had severe brain damage since birth and has constant epilepsy seizures. He is treated with a new technology called Cytotron. It can give hope to many difficult cases of epilepsy, I believe.
Here is the link with more information on this movie: https://about.netflix.com/en/news/luccas-world-is-coming-to-netflix-or-watch-the-trailer-now
Wishing you better days and sending you good vibrations.
Kind regards,
Chris (@santosha)
Brother of Epilepsy
can you update us on how your sister is doing with her DBS.
My son is scheduled for a DBS implant next month at Mayo.
They are doing a trial where the DBS leads are graphed with stem cells.
My son has genetic epilepsy with a variant gene called NPRL3. He also had a VNS about two years ago, It doesn't seems to prevent seizures but it doe seems to arrest them once they start. Has anyoen in the group had both VNS and DBS? Anyone out there had stem cell therapy?
Dad
Hi, @brotherofepilepsy. Wanted to be sure you saw the questions @jamessr was asking of you.
@jamessr - your question about whether other members have had both a vagus nerve stimulator (VNS) and deep brain stimulation (DBS) is a good one. If you'd be willing to start a discussion on this question, that would be great. If starting a new discussion is not familiar, go to the Epilepsy & Seizures support group on Mayo Clinic Connect https://connect.mayoclinic.org/group/epilepsy-2bb359/. Under the blue box to the left side, you will see "Start a discussion." When you click on that, you can enter your question.