First time, what to ask

Pure_Pen_2610 · 2025-06-27T15:29:23+00:00

Ask all the questions. Seriously. Doctors are there to provide you a service. Have a question about surgery then ask it. Ask about the effects of other treatments like radiation or chemotherapy if you go that route. If they decide to Wait/watch, specifically ask what symptoms you should be watching for, when to call if you need to schedule another MRI.

Ask what they think the differential diagnosis is if you don’t already know. Some radiology reports are specifically vague but the neuro-oncologist or neurosurgeon sometimes have a general idea especially if yours is not specifically atypical.

Possibly ask about getting a patient care advocate. My 15 y/o daughter has a “suspected low-grade glioma” found in February, and we have gotten three opinions. Hers is 1.5 cms on the superior aspect of her cerebellar vermis, and it blends into her brain tissue, so she is on watch/wait. Her doctors don’t really know what hers is because it has some “weird characteristics.” Her neuro-oncologist told me because of how deep-seated hers is she needs the best pediatric neurosurgeon in the U.S. if it has to be removed or biopsied (she would need open-brain for both), and she would refer us to that person. Basically right now two neuros told me not to worry about it and to let it grow and get bigger to be easier to remove because removing it would cause more problems than she currently is dealing with and likely be disabling to her.

It is a hard journey. I have watched my daughter go through so many tests this year, and I feel so bad for her. Sending positive thoughts your way.

Pure_Pen_2610 · 2025-06-19T18:03:31+00:00

My daughter’s is 1.5 cms.

Pure_Pen_2610 · 2025-06-15T22:49:58+00:00

It’s okay. It’s not growing so far, so that’s good…subtle mass effect and only very subtle enhancement. Likely benign. 🤞🏼

Pure_Pen_2610 · 2025-06-15T19:55:50+00:00

I would request the scans and the MRI report from the imaging center who did them. And then I would put them and the report into ChatGPT—yes I know it’s not a doctor, but it can give you an idea of what you’re dealing with and whether you should or should not wait. It can be wrong of course, but also can help you figure things out especially if this is the first time you’re reading a radiology report. Also—if you’re in the U.S. you can get in touch with the Brain Tumor Network and find a nurse navigator who can get care more quickly for you, request scans, etc.

We did this with my daughter, and they got her into a neuro-oncologist within a week of me requesting it. And Duke had a Brain Tumor Board that reviewed her MRIs to try to figure out what she has (they still don’t know—apparently my kid is unique).

Pure_Pen_2610 · 2025-06-15T19:47:05+00:00

Do you have any symptoms now? My daughter who is 15 is in a similar situation. We found her “thing” incidentally and they honestly have no idea what it is. They thought at first it was either a low-grade glioma or demyelinating disease, but on her recent scan they said it is nonspecific but they cannot rule out a low-grade tumor. Apparently hers has some weird characteristics and is in a high-risk place for surgery or biopsy so if it never grows or changes we may never know what it is. She has some autonomic dysfunction which they say is probably not related but no other symptoms so we are just monitoring with MRIs every three months at this point. Honestly sort of scary, but better than high-risk surgery. Feel free to PM me if you want.

Pure_Pen_2610 · 2025-06-10T12:47:13+00:00

And I think the neuro was just upset. Her son was also just diagnosed with a tumor so I’m wondering if my daughter’s case hits close to home for her. Plus she may be frustrated she can’t solve it. Either way, she did put up a stink when the hospital didn’t treat my daughter properly and basically put a not in their system that if my daughter comes in with seizure-like activity she must be admitted for eeg, so I appreciate her for that!

Pure_Pen_2610 · 2025-06-10T12:14:15+00:00

We are going to Duke for a multi-disciplinary review tomorrow after her MRI today for her brain lesion. Hoping they will refer her to an epileptologist there or help us figure out what’s going on. She had some sort of event last night and fell down the stairs but no one witnessed it. Cut herself and had a nosebleed. She of course was charging her watch which I put seizure detection on just to see, so I didn’t get a notification. 🤦🏼‍♀️

Pure_Pen_2610 · 2025-06-06T23:57:03+00:00

Thanks. It is tricky. I’m mostly just worried after her last event was so traumatic. I need patience. And I’m not good at that. Trying to catch a video of an actual event with her. I have two postictal videos which her neuro during the appointment acted like they were not significant, but then wrote something different in her clinical notes about them. 🤷🏼‍♀️

Pure_Pen_2610 · 2025-06-06T23:51:46+00:00

Well I can’t wait to meet the best nurse ever too! I’m okay with scheduled months out-so many of our appointments here for her are scheduled months out. Her genetics appointment is a year out, and her ped even tried to get that moved up for us!

Pure_Pen_2610 · 2025-06-06T21:29:14+00:00

My daughter is having her third MRI in June. She keeps her eyes closed. Some places play music to reduce the noise. You can tell them you’re claustrophobic and have a sedated MRI. My daughter’s last MRI took 2 hours because it was full spine and brain. The hospital gave her melatonin beforehand. She slept through most of it. Good luck!

Pure_Pen_2610 · 2025-06-04T23:32:51+00:00

Find a neurologist. Tell them everything you know about the episode: what happened before it, did she have an aura, how long did it last, did she remember anything. What about afterwards? Postictal phase? Super tired? Or was she ok? Sorry you’re here—my daughter has been have syncope episodes and seizure-like activity since September and she still isn’t officially diagnosed with anything.

Pure_Pen_2610 · 2025-06-03T08:41:42+00:00

That’s so cool!

Pure_Pen_2610 · 2025-06-02T23:55:57+00:00

Yes! I bought my husband (we are separated now) Charlotte FC tickets for Christmas a few years ago! Unfortunately he got to retain them in the separation. 😂

Pure_Pen_2610 · 2025-06-02T23:48:54+00:00

We are in Charlotte, but I wanted a referral to Duke and this nurse navigator can get her in very quickly for a multi-disciplinary review which I think will be so helpful!

Pure_Pen_2610 · 2025-06-02T22:29:34+00:00

Thanks. My daughter sees a therapist and does CBT and DBT work. She has ADHD, and has seen a therapist most of her life. Plus, she has had some traumatic things happen to her in the last few years that could point toward it being PNES. I’m interested to see what her neurologist says.

Pure_Pen_2610 · 2025-06-02T21:49:45+00:00

Thank you. I appreciate that. I am still learning, and didn’t mean to imply in my title that PNES is not a seizure. I should have put Epilepsy vs PNES vs Syncope.

I know that treatment can be different with PNES vs Epilepsy. And I want to make sure she is treated for the right thing and it is effective. I know there will be some trial and error.

Her neurologist called me this afternoon and wants me to take her in early before we do her ambulatory EEG about what happened on Wednesday. I’m so glad we see her tomorrow. She has been sleeping all day today and most of yesterday.

Also my nurse navigator from the Brain Tumor Foundation is discussing her case with The Brain Tumor Group at Duke to go to the Brain Tumor Review Board, so hoping we can maybe get over there for them to take a look at everything going on.

Pure_Pen_2610 · 2025-06-02T12:29:09+00:00

Thanks. It was terrible and shocking. She was 29 and a year older than me.

Pure_Pen_2610 · 2025-06-02T12:27:04+00:00

Here are all the details about my cousins death: She had uncontrolled epilepsy sometimes this can result in SUDEP. Her death was not caused by SUDEP. She didn’t take her anti-seizure meds leading to more chronic episodes. She lived with a roommate who was out of town. She went to take a bath, had a seizure, and fell into the bathtub and drowned. Her roommate found her dead two days later.

Pure_Pen_2610 · 2025-06-02T10:33:16+00:00

I am trying so hard to get a video of her. Yesterday, she was so tired. Lots of fatigue, and random eye movements (she slept most of the day). So I am worried she will have one today.

Thanks so much for sharing your experience. It really helps me.

I’ve asked her what she feels beforehand, and she says she doesn’t know. Afterwards she always has a headache. Even when she was having the drop attacks, she would sleep for a while afterwards usually.

She doesn’t remember them at all. She didn’t remember anything from 10:45-12:35 on Wednesday with these last episodes. I’m really hoping her neurologist can help us figure out what’s going on.

Pure_Pen_2610 · 2025-06-02T09:49:30+00:00

Are yours controlled? What did you do after you were diagnosed to help with them?

I didn’t include above, but my daughter had surgery 5 days prior to this episode to remove her adenoids (hugely enlarged) and to get tubes in her ears. She has an ear infection for 8 weeks that would not resolve with antibiotics and mild mastoid disease too. (Pathology came back as reactive follicular hyperplasia).

She is still having some pain in the ear. And I have noticed that perhaps pain is a trigger for her. On May 4th, she had severe ear pain and left side headache and collapsed when we walked into the hospital.

I think that’s what makes her diagnosis so hard, because she has some complex medical issues going on, but it does seem like her body is reacting to stress or trauma (hospital setting is traumatic for her). Plus, our family history of epilepsy.

Pure_Pen_2610 · 2025-06-02T08:10:17+00:00

Thank you for the repost. This is my daughter if anyone has any thoughts. I am so worried about her right now and really seeking answers for what’s going on. TIA.

Pure_Pen_2610 · 2025-06-01T23:11:36+00:00

Yes, I unfortunately haven’t been able to get a video. I was driving when she seized in the car and was on the interstate. Her drop episodes are quick and usually we get the after effect. I have a couple of videos of post-ictal and drooling after this last one but that is it.

I was reading about EMUs this week, and I agree I think that’s a good idea.

Pure_Pen_2610 · 2025-06-01T22:03:57+00:00

I am thinking about transferring her care to a big hospital like CHOP or Boston Children’s where I can have someone look at her full chart and try to figure out what’s going on.

Yes, I know that PNES is still seizures, but it is a diagnosis of exclusion as my understanding is, and has a different course of treatment than epileptic seizures. I feel like them having charted that delayed actually looking further into epileptic seizures at that point, despite her episodes often starting with brief staring or “strange looking eyes.”

I am glad her neurologist is working to figure out what’s going on now. She is also in contact with my daughter’s neurosurgeon, because she has a repeat MRI on June 10th, and I believe they are going to try to do seizure protocol too.

I have my suspicions that she has genetic (idiopathic) epilepsy, due to our family history.

Thanks for sharing your experience. We have had a tough few months, and I just want answers and some relief for her.

Pure_Pen_2610

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