Amee’s Village

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. ❤️

Good news first — my incision has fully closed on the outside, which is such a huge relief. It’s still soft underneath, so I’m being very cautious with it. I’m keeping everything gentle right now when it comes to brushing, washing my hair, and just overall care around the area.

I am SO thankful to finally be at the point where everything is fully covered and healing on the surface.

That said, Taking it easy today because I’ve had some new and changes over the past few days. I’ve developed a pain that just isn’t going away, and my seizure-like episodes have increased again. I’ve also noticed a very tender, softball-sized area on the left side of my head near the crown/top. It’s painful to touch, but also aches constantly even when I’m not touching it. The pain in that area started this past weekend and hasn’t really eased up.

I’m keeping a close eye on everything and will be following up with my medical team as needed. Just taking things one step at a time and staying cautious.

Thank you all for continuing to check in and support me through all of this.

This week was a big one for our family.

Our littlest celebrated her last year of single digits, so we took her to Disney World for her 9th birthday. Thanks to being able to rent a scooter, I was able to keep up with everyone and be part of the adventure. As grateful as I was for it, I won’t lie—it was still incredibly exhausting. The long periods of sitting really took a toll on my back, and I’m still healing from the lumbar drain removal, which unfortunately left me with a small tear that caused a spinal CSF leak.

I wasn’t allowed to ride any roller coasters, but I was able to ride Flight of Passage twice with Bella. If you’ve never experienced it, it’s a simulation ride, and it was absolutely incredible. The first time we rode, I spent most of the ride watching her face as she experienced the magic for the very first time. Seeing her wonder, excitement, and pure joy was worth every ache and every setback.

This trip will live in my heart for the rest of my days, and I have a feeling it became one of Bella’s core memories too.

We enjoyed several of the slower attractions together, and she and her dad tackled all the rides I couldn’t go on. Watching them make those memories together was just as special.

Now for the “no good deed goes unpunished” part…

Last night, after returning from Disney Springs for dinner, I noticed three spots along my incision had reopened. Thankfully, I already have an appointment with my surgeon tomorrow. I am more than ready for this incision to fully close and STAY closed.

My surgeon recently increased my Vitamin C to 500mg daily to help boost collagen production and support healing. At this point, I’m not sure what else can be done besides giving it time, following instructions, and praying that I avoid any more infections or complications.

While this is certainly another setback, I can honestly say it was worth it. I would do it all over again just to see the joy on Bella’s face and to give her these memories.

Thank you all for continuing to follow along, pray, and cheer me on through this journey. ❤️

Quick update after seeing my surgeon last Friday:

Dr. Jobe was pleased with how my incision is healing again, which was really encouraging to hear. The antibiotics have been stopped for now since everything looks good and there are no signs pointing to ongoing infection. We’ll go back on the 12th for one more check just to make sure healing continues and the infection is truly behind us.

Because I’m still having some swelling in my scalp/temple area, we’re staying watchful and keeping a close eye on things.

We also talked again about the bigger picture and what comes next. In July, at my 3-month post-op visit, we’ll reassess symptoms and decide if a lumbar puncture is needed to check my CSF pressure. If things still appear to be in a high-pressure state and pressure is elevated, we may need to discuss a VP shunt.

I’ll be honest—that’s something I really hope to avoid if at all possible. Shunts can absolutely help many people and can be life-changing when they work well, but they can also come with challenges. There can be complications like tubing kinks or blockages, abdominal pain, infection risk, over-drainage or under-drainage, and sometimes ongoing headaches or migraines even after placement. Some people do really well with them, while others need revisions or continue navigating symptoms. It’s a lot to consider, and I’m hopeful we can avoid that road if possible—but grateful to have options if we need them.

For now, we’re still very much in “watch and wait” mode.

The good news is that my strength and stamina are improving. I’m tolerating being up more, moving around better, and walking stronger than I was even a couple weeks ago—and I’m really thankful for that progress.

The harder part is that the seizure-like episodes, migraines, and some of the strange neurological symptoms are still hanging around. Recovery definitely hasn’t been a straight line.

But one day at a time, right?

Thank you all for the prayers, messages, check-ins, and encouragement. It truly means so much to our family. 🤍

A little update 💛

As you know, yesterday I ended up back in the ER because of continued swelling and drainage from my incision after surgery. After being evaluated and having a CT scan done, the reassuring news is there was no intracranial complication and no signs of a deep infection and what is infected is responding appropriately to the antibiotics.

One thing they did find is that part of my incision has dehisced (opened back up), which explains a lot of the drainage and swelling I’ve been dealing with. Although there is soft tissue infection present, it is thankfully being controlled well with strong antibiotics and they feel like we caught it early enough to avoid any serious issues.
Unfortunately, with the incision opening, healing is going to take longer than originally expected. The body has to work harder to heal tissue when the wound edges aren’t fully closed, so it means more close monitoring, wound care, and a little more patience than I was hoping for. It’s definitely discouraging and not the update I wanted to share, but I’m grateful it’s being treated aggressively and watched closely.

More concerning; During the doctor’s assessment, he was able to see clear drainage coming from the incision, and the CT also showed soft tissue swelling with a small pocket of air under the scalp. Because of my history, those findings raise concern for another possible CSF leak, since clear drainage can sometimes be spinal fluid and air under the scalp can happen when there’s a communication allowing fluid or air to pass through. Because of my history with the CSF leak and the continued intermittent clear drainage from my ear and scalp swelling, they did consider whether that could be happening again, and while there wasn’t definitive evidence of an active leak on imaging, it’s still something they want monitored closely. I do have a follow-up with my neurosurgeon on Friday so we can take another close look and decide on next steps.

This healing journey has definitely had some unexpected twists, and I won’t pretend it hasn’t been stressful at times. But I’m incredibly thankful for reassuring imaging, for doctors taking things seriously, and for every prayer, message, and bit of encouragement from this village.

Thank you all for continuing to check in on me and lift me up. One day at a time… and celebrating every bit of progress along the way. 💛