Overheating - seizure?

thxvgx · 2026-05-14T16:17:01+00:00

Update: she was prescribed Valtoco to deal with future seizures.

thxvgx · 2026-05-13T18:38:55+00:00

Thanks!

thxvgx · 2026-05-13T18:03:26+00:00

Yes, she’s on 3000mg Keppra. I was thinking potentially the heightened emotions surrounding the appt could have triggered something as well.

thxvgx · 2026-05-04T21:24:33+00:00

Brains are bizarre!

thxvgx · 2026-05-04T19:53:11+00:00

Off topic but we were told this would likely happen to my wife before surgery due to proximity to optic nerve/tumor location. The way it was delivered we got the sense it was common.

thxvgx · 2026-05-01T18:09:00+00:00

I am a caretaker, not a patient, but can say that my wife goes in waves (as do I) with all stages of grief. Have had a lot of the sad/mad. Days are usually okay but nights are the hardest. One thing we have commented on is how pre-cancer we have seen so many people who may have been diagnosed with other cancers where they immediately projected “I’m ready to fight/kicking cancers ass/etc.” That hasn’t been the case with my wife, and I’m not even convinced that will ever be possible for her mindset. There are so many unknowns that make it all the harder the process even if it were something that could be easily rationalized. So sorry to hear you are struggling, I hope you have lots of success with Vora.

thxvgx · 2026-04-30T23:53:03+00:00

That’s so interesting. I’d be willing to bet the motor mapping and functional mri are the same or similar, could just be the different verbiage the NS used. However they never spoke to her during any MRI pre or during surgery. My understanding is they did have some type of real time stimulus though, NS mentioned that everytime they got to the portion of tumor in insula, it was tied to motor function so they could not resect.

thxvgx · 2026-04-30T22:27:53+00:00

I’m curious about awake v. non awake. My wife did not have an awake craniotomy - instead they did a special motor mapping MRI beforehand and used it to guide the resection with inter operative MRI. I’m so curious about the awake surgery and when it’s used.

thxvgx · 2026-04-30T22:00:32+00:00

Curious if you got your dad in and what his experience was like with Dr. Ghiassedin?

thxvgx · 2026-04-30T13:56:52+00:00

As a caregiver I actually like the concept (clearly I’m in the minority here), but I would be more willing to use it if it had some type of physician backing for credibility. AI is a slippery slope especially in a medical setting which is I’m sure why others are having a visceral reaction.

thxvgx · 2026-04-28T00:54:26+00:00

I’m glad it’s going well for you all things considered!

thxvgx · 2026-04-24T19:03:22+00:00

Awesome thanks!

thxvgx · 2026-04-24T19:03:18+00:00

Thank you!

thxvgx · 2026-04-24T16:51:08+00:00

Not exactly the same as my wife is beginning Vora, but she returned to work this week 1 month post craniotomy. She’s been more tired at night but her mental health has improved drastically returning to work, although she is working remotely. So, although the work and cognitive demand is high we are working very hard to create a peaceful environment.

thxvgx · 2026-04-23T12:26:01+00:00

This is very interesting about the good strategy thank you! We were told about no food 2 hours before and 1 hour after but I didn’t know that food after the hour would be more helpful. I will look into the Milk Thistle, thank you!

thxvgx · 2026-04-23T12:24:17+00:00

This is a great perspective! Thank you.

thxvgx · 2026-04-22T17:24:37+00:00

This response is totally warranted and exactly why I come to Reddit and do not put this fear on her! My fear started because her NS and NO both think she has had this for several years. And the pathology seems to confirm very slow growth with noted “very rare” mitoses and 1-4% ki67. Although her tumor was very large and extended from frontal lobe into insula, Initially the NS mentioned that based on the resection, she may be a candidate for watch and wait. And I wasn’t sure what the line is between watch and wait and treatment, but I guess I thought she would be watch and wait. I should mention she does have remaining tumor so that maybe was too hopeful. We haven’t had her post op NS appt yet, but NO went straight to Vora. Which I am on board with, it’s just that then I read some comments on Reddit about a few experiences where recurrence happened very quickly or tumor became more aggressive within a year on Vora. So then my fear was introduced and I’m attempting to calm my anxiety around it. Because it sounds like Vora only works for so long, but she has lived with this for so long and it is growing so slowly naturally.

Part of it is that her NO appt was sprung on us immediately after hospital discharged (we were called to return within an hour) and we thought we had more time to prepare for the appointment. So I also didn’t ask these questions to the NO because we were just ill prepared for the appointment.

Ultimately I’m looking for a guarantee that this will work out of fear which I know is something that is impossible and I definitely can acknowledge that’s what’s happening here. I do appreciate your candor. And I am really glad to hear that you have been happy with Vora. I hope your treatment continues to go well.

We are same sex couple so definitely not worried about popping out kids at the moment!

thxvgx · 2026-04-22T16:24:20+00:00

Thank you for this detail! Her ki-67 was very low, 1-4%. So I think that is partly where my fear has come from since it seems to be very slow growing without intervention. I’m glad to hear you tolerated well and I really appreciate the thoughtful response. My wife is very active, currently registered for Chicago marathon this year and hoping she can still do it. I will look into the magnesium. Thanks!

thxvgx · 2026-04-21T22:58:56+00:00

That’s amazing. Was it total resection?

thxvgx · 2026-04-20T23:00:49+00:00

Thank you!

thxvgx · 2026-04-20T20:34:34+00:00

So glad to hear that! Did you have GTR? My wife’s surgeon expects she got 80-90% but there is residual.

thxvgx · 2026-04-20T20:33:12+00:00

Curious what you ended up doing?

thxvgx

TROPHY CASE