Amee’s Village

Well… today we officially got the puzzle put together. 🧩

I had my appointment with Dr. Jaffer (my neurologist at Moffitt Cancer Center) today to go over the new EEG and MRI, and he has officially confirmed that I have epilepsy.

Apparently my brain decided 2026 wasn’t quite eventful enough. 🙃

On my most recent EEG, he saw 10 sharp spikes coming from the temporal lobe, which he explained are consistent with epilepsy. And honestly, as much as I didn’t want another diagnosis added to the list, SO MUCH finally makes sense.

He said this explains the weird aura sensations I’ve been trying to describe for months, that strange roller-coaster/euphoric feeling in my head, as well as the freezing episodes where I’m completely aware of what’s happening around me but cannot respond or snap myself out of it.

It also explains something that has probably scared and frustrated me just as much: the memory problems and periods of amnesia. Because the seizure activity is happening in the temporal lobe, which is heavily involved in memory, he said all of these things fit together.

So basically… I wasn’t losing my mind. My brain was just short-circuiting. 😂

He is starting me on an anti-seizure medication called Keppra (levetiracetam), and hopefully that will get the seizures under control.

There are still questions, of course. Especially because all of this started after my craniotomy/skull-base repair and the abnormal activity is in that same general region of my brain. But for today, we at least have an answer for what these episodes actually are.

It’s a weird feeling.

I’m not exactly thrilled to be able to say, “Hey guys, add epilepsy to the list!” 😂 But after months of knowing something wasn’t right, trying to explain sensations that are almost impossible to put into words, and wondering what the heck my brain was doing… there is also a huge sense of relief in finally knowing.

We have a diagnosis. We have a treatment plan. And we keep moving forward. ❤️

Because apparently boring was never going to be my thing. 😂

Update 🧠💜

Well… apparently my brain has decided that one neurological adventure at a time simply isn’t enough. 😂

I FINALLY got the the results of my second EEG, and we have another piece of the puzzle.

My first 72-hour EEG was June 29–July 2, a few months after my brain surgery. It was abnormal, but my neurologist felt the abnormal activity was explained by the “breach rhythm” from my craniotomy, basically, when you’ve had a piece of your skull opened, the EEG can pick up brain activity differently in that area.

So at that point: abnormal EEG, but no evidence of seizures.

Fast-forward to my second EEG, September 18–21.

This one apparently decided to spice things up. 🙃

The expected changes from my surgery are still there, BUT it also picked up abnormal sharp/spike activity in my left temporal lobe. My neurologist’s official interpretation says there are “left temporal interictal discharges consistent with focal epilepsy in this region.”

So… that’s new. 😂

One important clarification: I pushed the event button seven times during the EEG when I felt the bizarre roller-coaster-drop/euphoric sensation I’ve been trying to explain for months. Those sensations didn’t show a seizure pattern on the EEG. Keep in mind they don’t always turn into an episode where I’m frozen in place, but the sensation does always precede the episode - if that makes sense.

BUT — I never had one of my actual freezing/staring episodes during the EEG.

Those are the episodes where I suddenly freeze/stare, I know what’s happening around me, but I can’t respond or make myself snap out of it; and afterward I feel a little fuzzy.

Unfortunately, none of those episodes were captured, so we still don’t know for sure whether those are focal seizures.

So basically:

June 29–July 2: Weird brain waves, but blame the hole we cut in my skull. 😂

September 18–21: Weird brain waves PLUS actual epileptic activity in the left temporal lobe.

My freezing episodes: Still refusing to perform on command when I’m hooked up to an EEG. Naturally. 🤦🏻‍♀️

I see my neurologist TODAY, so hopefully we’ll figure out what all of this means, whether he’s officially diagnosing focal epilepsy, whether my freezing episodes fit focal seizures, and what the treatment plan looks like from here.

At this point, I’m just happy to finally have some supportive information showing that something really is happening (and it’s not just me being crazy 🤪) and to have another piece of this ridiculously complicated neurological puzzle.

Stay tuned for the next episode of “What the Hell Is Amee’s Brain Doing Now?” 😂🧠💜

I received the bill from my brain surgery, and when I saw the amount, my heart sank.

$160,578.75.

And that’s not even the whole story.

There was another $60,000 for the Life Flight. Then there are medications, scans, procedures, specialist appointments, follow-ups, travel back and forth to doctors and hospitals, gas, missed work, and countless other expenses that come with being seriously ill.

At some point, I have to ask: How am I supposed to afford this?

I have health insurance. We pay for it every month because we’re told it’s supposed to protect us when the unthinkable happens. Well, the unthinkable happened to me. I needed brain surgery. I needed emergency care. I needed to be airlifted. None of this was optional.

I didn’t get to look at a price list and decide whether I could afford to save my own life.

And after everything my family and I have already been through, I should be able to look at this bill and simply feel grateful that I’m still here. Instead, there’s this crushing realization that surviving can come with a price tag you may never be able to pay.

How can an ordinary families possibly absorb hundreds of thousands of dollars because someone got sick?

What is the point of having health insurance if a medical crisis can still financially devastate you?

There is something deeply wrong with a healthcare system where getting through the illness is only the first battle; and then you have to figure out how to survive the bills.

A little update… ❤️

Sorry it’s been a while - lots of life events have kept me busy and away.

Since my CSF leak repair/craniotomy in April, there have been some neurological changes that we’re still trying to understand, and lately I’ve realized they may need to be looked at together rather than as separate issues.

One of the biggest things I’ve discovered is that I’ve lost access to a huge portion of my long-term memories. My childhood, teenage years, first marriage, and much of my older children’s early years are essentially blank.

I still know the facts about my life. I know who people are, that I was married, that I had my children, etc. But knowing something happened and actually remembering experiencing it are two very different things.

Even photographs often don’t trigger anything. I can look at a picture of myself at an event and feel like I’m seeing it for the first time. I simply have to accept that it happened because the picture says it did.

What concerns me most is that these are memories I know I could access before surgery, because I would talk to my children about things that happened throughout my life.

At the same time, the freezing/seizure-like episodes I’ve been experiencing since surgery are continuing. During them, I suddenly become frozen and stare. I’m aware of what’s happening around me, but for those seconds I can’t seem to break out of it or respond. Some have become longer recently.

Because those episodes are continuing, my neurologist is ordering another 72-hour video-monitored EEG as well as another brain MRI using an epilepsy protocol. My previous MRI showed only expected postoperative changes with no obvious injury to the left temporal lobe, while my EEG showed left-temporal slowing but no seizures were captured. That means there was slower-than-expected electrical activity over the left temporal region

And that’s where my concern comes in.

My surgery was performed through the left temporal area to repair the skull-base defects. The brain itself wasn’t operated on, but my operative report documents elevation of the dura and temporal lobe to access and repair the area.

So now I have several questions: Is the memory loss connected to what happened during or after surgery? Are the freezing episodes related? Could there be something happening in the temporal-lobe memory/seizure networks? Could the changes in CSF pressure have played a role? Or are these completely separate issues?

I don’t know…. and I’m not assuming that surgery caused any of it. I just want to understand why these changes began afterward.

Thankfully, I can still form new memories and I remember much more of my recent life, although I’m definitely more forgetful and sometimes need reminders.

I see my neurosurgeon on the 21st, and this is going to be a major part of that conversation. Between that appointment, the MRI and the 72-hour EEG, I’m hoping we can start putting some of these pieces together.

It is an incredibly strange feeling to know decades of your life happened but not be able to remember being there for them. It actually makes me incredibly sad.

So for now, we keep looking for answers. ❤️

Today brought another important piece of information in this very long neurological puzzle.

I had my lumbar puncture this afternoon to measure my intracranial pressure. My opening pressure was 17 cm H₂O. They removed approximately 31.5 mL of cerebrospinal fluid, and my closing pressure was under 9 cm H₂O.

The encouraging part is that 17 is not considered an elevated opening pressure. Increased intracranial pressure/IIH has been one of the big questions throughout this journey, particularly because of the skull-base defects and CSF leak that required surgery in April. So seeing a normal pressure today is reassuring.

But, as seems to be the theme of this journey, one reassuring result doesn’t necessarily explain everything else.

My doctors now have several different pieces to put together.

My recent 3T MRIs of my brain and entire spine were done to take a much more detailed look at what may be happening neurologically and to look for anything that could help explain my continued symptoms, including whether there is evidence pointing toward another CSF leak or another structural cause.

Then there is my EEG, which was abnormal and showed left temporal theta slowing. Interestingly, that is also the side where I had my temporal craniotomy and skull-base repair. The EEG doesn’t by itself diagnose seizures, but the abnormality is important because I’ve continued having the strange episodes where I remain aware of what is happening but briefly cannot respond or move normally.

And now we can add today’s LP: my intracranial pressure was not elevated at the time it was measured.

So we now have MRI findings, an abnormal EEG, ongoing neurological symptoms, and a normal opening pressure that all have to be looked at together rather than in isolation.

For me, today’s result is still good news. If high pressure isn’t driving what I’m experiencing right now, that helps narrow the search. But it also means there are still questions about what is causing these symptoms and whether some of the abnormalities we’re seeing are connected to the CSF leak, the surgery, or something else entirely.

The next step is allowing my neurology and neurosurgery teams to put all of these pieces together and determine where we go from here.

After everything since December; the CSF leak, hospitalizations, procedures, brain surgery, recovery, and now months of testing… I’m learning that sometimes progress isn’t getting one test that explains everything. Sometimes it’s slowly ruling things in or out until the picture finally becomes clear.

So today I’m choosing to celebrate the good part:

My pressure was normal, AND I feel tremendously better than I did in December. 💙 🙌

Now we keep working on the rest of the puzzle. 🧩

Update 🧠💜 — MRI Results

Today I had my 3T MRIs of my brain and entire spine, and overall, there is some genuinely reassuring news.

The biggest finding: there was no obvious evidence of an active CSF leak on the brain or spine MRIs. There were no spinal fluid collections, brain sagging, subdural collections, masses, bleeding, or stroke. 🙌

My brain MRI showed mild dural enhancement near the area of my left temporal craniotomy, which they believe is reactive/expected from surgery, along with just a trace amount of fluid remaining in the left mastoid.

The spine MRI also did not identify an obvious source of a spinal CSF leak. That’s definitely encouraging, although MRI does have limitations when it comes to detecting certain smaller or more difficult-to-see types of leaks.

There were some other findings in my spine:

• My previous C5–C7 cervical fusion is stable, but there is new/progressed degeneration at C4–C5. A disc/osteophyte complex is now indenting the sac around the spinal cord and abutting the front of the cord. Thankfully, the spinal cord itself still has normal signal.

• My thoracic spine looked really good overall, without any major narrowing.

• At L5–S1, there is mild disc degeneration/facet arthritis and mild narrowing of the opening where the nerve exits on the left, but no significant spinal canal narrowing.

• And then there was an interesting finding I apparently came into this world with: partial lumbarization of S1, also called a lumbosacral transitional vertebra. Basically, the first vertebra of my sacrum is partially shaped more like an additional lumbar vertebra, with an enlarged part of the bone making a partial connection with the sacrum. It’s a congenital anatomical variation meaning I’ve had it since birth.

After everything my body has been through over the past several months the cranial CSF leak, skull-base repair, lumbar drain, spinal leak and blood patch seeing no large or obvious ongoing CSF leak is a WIN. 💜

But this isn’t quite the end of the investigation.

My seizure like episodes are still happening, and MRI has limitations when it comes to detecting certain types of CSF leaks. My next big piece of information should come from my lumbar puncture on August 11, when they’ll measure my opening pressure and we can hopefully get a clearer picture of what my intracranial pressure is doing now.

So for tonight, I’m taking the reassuring parts as a victory while still acknowledging that there are some findings to discuss with my doctors and some unanswered questions left.

One test at a time. One answer at a time.

Amee’s Village Update ❤️

I finally got the results from my EEG. While it was abnormal, it did not provide a definitive answer.

My neurologist’s report states:

“As the medical provider for the patient named in this Neurodiagnostic Report, I hereby attest that I have completed the professional component of the electroencephalogram testing for this patient, in that I have addressed the findings, relevant clinical issues and comparative data (if available) in creating the patient’s plan of care and have established a diagnosis or determined that a diagnosis cannot yet be made without further action.”

In other words, there is enough to warrant more testing, specifically to rule out seizures, but no final diagnosis has been made yet.

The next few weeks will be busy.

August 8th I’ll have blood work to monitor my cancer numbers, followed by imaging of my head, neck, and entire spine. Dr. Jaffer (neurologist) wants to make sure there isn’t another cranial CSF leak and also rule out a spinal leak since I developed one immediately after my craniotomy when my lumbar drain was removed.

Then, on August 11th, I’ll have another lumbar puncture to measure my CSF pressure.

Based on my current symptoms, I suspect my pressure may be elevated. At the same time, I still have days that feel more like low-pressure headaches, and those seem to coincide with the tapping sound I hear. That’s one reason my team wants to thoroughly investigate what’s going on before deciding on the next step.

As always, I’m taking this one test at a time. I’m incredibly grateful for everyone who continues to pray, check in, and those who walk this journey with me. Your encouragement means more than you know. ❤️

Amee’s Village Update ❤️

Yesterday I had an appointment with my neurologist. After talking through the symptoms I’m still experiencing, he decided it’s time for more imaging. He explained that it’s possible I have additional CSF leaks and that they could even be located in my spine.

To say I’m deflated would be an understatement.

My 72-hour EEG results haven’t been posted or reviewed yet. It typically takes about 10 days after the recording ends, so we’re hoping to have those results by around the 12th. In the meantime, I’m still having the episodes. I’ve noticed they seem to be more frequent or more noticeable when I’m especially tired or when I’ve pushed myself too hard during the day. I’m hoping the EEG will provide some answers about what’s causing them.

This journey has been so much longer and more difficult than I ever imagined. Lately, life has felt incredibly heavy, and I’ve found myself withdrawing from the very people and things that normally bring me joy. That’s been one of the hardest parts to admit.

I did have the presence of mind to be honest with my doctor about how much I’ve been struggling emotionally. I’m grateful that he listened and has started me on an antidepressant. I’m hopeful it will help me find my footing again as I continue navigating whatever comes next.

If you’ve been following my journey, first, thank you. Your messages, prayers, and encouragement have carried me through some very dark days. Right now, I could really use them more than ever.

Please keep me in your prayers, for wisdom for my medical team, for clear answers from the upcoming tests, for healing, for strength, and for peace while we continue searching for the next piece of this puzzle.

Thank you for continuing to walk beside me. I don’t take a single prayer or kind word for granted. ❤️

Monday I started the 72 hour EEG at home. I’m hooked up and look like a science experiment - they are video monitoring it as well. Hopefully I’ll find out what is going on with these episodes -

Will update once I get results.

Seizure-like episodes…

I heard back from my neurologist today regarding the seizure-like episodes I’ve been experiencing every single day since my craniotomy. Although my recent EEG didn’t show seizure activity, that doesn’t necessarily mean nothing is happening; it just means the episodes weren’t captured during the test.

Because of that, Dr. Jaffer is recommending a 72-hour ambulatory EEG that I’ll wear at home. The hope is that by monitoring my brain activity continuously for three days, we’ll be able to capture one (or more) of these episodes while they’re actually happening and finally get some answers before making any medication changes.

This feels like the right next step, especially since these episodes have become more frequent and are now happening throughout the day instead of just when I was lying down.

I’m thankful my neurologist is continuing to dig deeper instead of giving up after one normal test. Hopefully this longer study will provide some much-needed clarity.

As always, thank you for your prayers, encouragement, and for continuing to walk this journey with me. ❤️