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Cortical Dysplasia Resection Surgery for Focal Seizures
Epilepsy & Seizures | Last Active: Jul 18, 2022 | Replies (9)Comment receiving replies
Mmas, Thank you for your insight on this surgery type and personal success . Currently we are trying to schedule phase 2 testing which is likely going to be completed via deep prop electrodes. Once this 2nd phase of testing is completed our neurology team will present us with our surgical options based on their presurgical phase 1 and 2 testing.. We are working with the Mayo Clinic in Minnesota right now, but have our reservations about continuing down this road with them, as our experience with their team has been less then ideal for several reasons. We originally started with MN Epilepsy Group (MEG) and wanted a second opinion, so we sought out Mayo as our second opinion. It has only resulted in wasted time and we will likely transition back to working with MEG full time for phase 2 and surgery. As you know none of this is easy, but picking the right group to perform such a detailed surgery on such a young child is sickening and you have to trust your gut... Could I ask what your daughters seizures look(ed) like, frequency, duration before her surgeries and now what they look like, duration. And frequency for comparison to our daughters. We thank you for reaching out to us about your daughters journey with Epilepsy and her surgeries and wish her and your family continued success in achieving seizure freedom one day, soon.
Replies to "Mmas, Thank you for your insight on this surgery type and personal success . Currently we..."
A couple questions I would recommend you asking the doctors….are they going near motor cortex, is she a candidate for laser surgery (if they are able to pinpoint then more frontal lobe area will stay), is she a candidate for the implantation device (not sure what it is exactly called but it’s a device w electrodes that go into “problem” areas to stop seizure before it spreads. She would still need to be on meds though. We are possibly considering this but not anytime soon. I guess it’s not “approved” for kids yet so they have to fight w insurance), candidate for vagal nerve stimulator (our doctor didn’t think it would work for our daughter), would they be do mapping prior to resection surgery (where they put electrodes on their actual brain and monitor before they operate. We did that prior to ours. So it’s basically a surgery before the big surgery. They monitored for a week. It was not fun because you have to keep them from touching wires cause it attached to their brain. But would rather them just resection as little as possible). If I think of more I will let you know! Hope this helps!
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Hello @rg46
I am sorry to hear that your experience at Mayo was not all that you expected it to be. Mayo is always interested in patient feedback so that they can improve the care they offer.
Please consider contacting the Office of Patient Experience and let them know the problems you experienced. I'm sure they would like to hear from you.