Cortical Dysplasia Resection Surgery for Focal Seizures

Hello @rg46 and welcome to Connect. I can certainly understand your concern for your daughter's seizures and also for the surgery. It does sound like a difficult surgery to consider, especially for a youngster.

We have another member on Connect, @mmas, whose daughter had this surgery. Here is a link to her post explaining her daughter's experience,
https://connect.mayoclinic.org/comment/133086/.
I'm sure if you read her post, you will have a sense of her experience. If you would like to ask her questions, just click on "Reply" under her post and perhaps she can respond to your questions or concerns.

Has your daughter had seizures since birth?

Hello. I can certainly help if you have any questions? We have been through surgery twice. My daughter is now 9. But the sooner you do it the sooner their brains can adjust. Please reach out if you have questions. The hospital we did the surgery at (Boston Childrens) also put me in touch with a family who had a similar surgery. Something you might want to consider too. What type of surgery are they considering? It’s a very big decision I totally understand!

My daughter had the same surgery, the left front lobe resection, as well. Our situation was different because she was 1.5 and 2.5 when she had it. She was not talking due to seizures. Because we did it young she was able to use a different part of the brain to eventually talk. She started talking around 4. If her quality of life with having the the seizures is severely impacted then I would consider surgery. Our situation with having 2 surgeries didn’t stop our daughters seizures unfortunately. She continues to take meds and still has seizures but I don’t regret the surgery. She was having so many that she wasn’t developing. Anyways…let me know if you have any questions! The hospital we had surgery at (Boston Childrens) also put us in touch with a family that had a similar surgery. You might want to ask?

Thank you for the connection. No our daughter was inly diagnosed with Epilepsy in May of 2020, however her seizure type, frequency and duration drastically changed for the worse on December 31st of 2021. With medication not working to manage and or control her seizures, we are left with the difficult conversation of surgery.

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.

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.

Our daughter had infantile spasms and focal seizures since 7 months old. They probably were happening sooner in hindsight because she slept a lot as a baby. But that’s when I witness one. Before the first surgery she was having the spasms daily and focal seizures I would say a couple a week. She failed numerous meds. After the first surgery the spasms went away and she was having the focal seizures a couple a week or every other week. When we did the second surgery they resectioned more of her frontal lobe and premotor cortex. She had to learn to walk again. We have done intensive therapy for her arm/hand. She has a right sided weakness arm/leg. She wears a brace. She had about 9 months of no seizures after 2nd surgery but then they came back. She would really only have them in sleep. Still on numerous meds. This year has been quite rough because she been just having them anytime. So she just drops. Knock on wood we have had a good month. We have been increasing/changing meds which as you probably know is hard on them for school, focus, etc. I would definitely recommend Boston Childrens. We have been happy with her doctors. I hear you, you definitely can’t take this lightly and always good to get a second or third opinion.

As far as what her focal seizures look like. She would fall if awake and would be stiff. Jerking would happen on right side after a couple of mins. Sometimes with breathing difficulties so we would administer rescue meds. Very scary! She is totally out of it and needs like a hour or so nap after them. Prior to this year she really only had them in sleep and I sleep w a monitor next to me all night. But things have changed unfortunately. That’s honestly the scariest part.

Let me know if you have any further questions. I’m here for you!

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!

For sure @rg46, such surgery is something that has to be analyzed very carefully.
Have you @rg46 considered keto diet before this surgery? There is a wonderful movie with Meryl Streep called "First do no Harm". Worth watching it. It is also available on YouTube for free.
Have you also tried CBD instead of conventional AEDs to see if seizures of your daughter might be better controlled? In know that Epidiolex has been approved by the FDA in the United States.
I myself have temporal lobe epilepsy on the left side with a lesion on the hippocampus. With very frustrating results with AEDs, I have been controlling my seizures better with a diet and full CBD medicine.
Hope to have helped a bit!
Kind Regards,
Santosha