I wanted to start by saying that this experience is unique to me and my medical situation. I have a cavernous malformation in my right temporal lobe. This is in a location that is on the surface, and I’m told it is easy to resect with minimal or no damage to healthy brain tissue. On my MRIs, there was evidence of bleeding and a large “blooming” around the small lesion. This was an indication of prior bleeds, and in my 2026 MRI there was evidence of a recent active, small ble

I just realized I didn’t write a post yesterday. Yesterday would have been one week since my surgery. Symptoms today: continued double vision, continued ataxia, and frequent nausea and dizziness. Headaches are fairly mild generally; I don’t realize that I’m in pain unless I bend over beyond my waist. When I do that, there’s a large amount of pressure. I’m still taking Tylenol as scheduled. It was on a new medication called Jornavx. I ran out of that last night, and it turns o

I suppose it’s been long enough for the days to be rolling together. It now seems extra hard for me is to step away from not being the primary caregiver of my toddler. I don’t think this is as much of a problem for him as it is for me; it hurts my heart. Today I’m trying to move myself from the room to lie down. I’ve never been much of a napper; this hasn’t changed since my brain surgery. I tried to lie quietly. I tried to rest my eyes. I tried to let my family take care of t

Today might’ve been a bit of a setback. I had so much pressure behind my eye, and my vision has been so poor that I told my team. This is a big problem for me, and they agreed to give me an oral steroid. After being on this for a day and a half of the pressure released, and my vision improved significantly. They did mention that this is quite normal and would have gone away on its own. But I’m so glad that I had this option to help speed up my recovery. Even when that was get

I’m seeing a lot of improvement. After continuing to complain about the vision in my eye and the pressure, I was given a steroid to help with some of the inflammation. I explained that this is normal and should go away on its own, and taking the steroid does increase the risk for infection slightly, so I need to monitor my incision closely. My son was able to stay at her house last night, and this made me so happy. I acknowledge that this puts a lot of burden on my husband t

It’s day three, and I’m at home. I really want to interact with my son, but after a few minutes, I feel incredibly fatigued, and I notice that I need to go lie down for a nap. I’m also struggling to read him books or chase him around, as he likes me too. I am struggling to read because I cannot focus on the words. My brain gets tired when trying to comprehend words, but I also have very blurred vision in my right eye. It is very difficult to focus, and I think this is causin

I did feel like I was improving on day two in the hospital. I still had a lot of pain, and medications were switched up. I was able to eat some yogurt and drink some smoothies. I had an evaluation from physical therapy, occupational therapy, and speech therapy, mostly focused on mechanics and ways to take care of my toddler. Speech therapy was the most concerning because I could not chew a graham cracker, and I think she realized my speech was a little slow and that I was sea

I do not know how long it took, but I do remember being in post-op. My nurse is really funny and really sweet. My husband came in as soon as he was allowed and spent some time with me. Pretty soon after being able to eat or drink, they sent me off to a room for me in the hospital. In the new room, there were no limitations on visitors. At this time, I was sitting up talking; the biggest pain I had was stiffness and soreness of my jaw, which made it hard to talk or laugh. Sh

I’m nervous. Of course, there are all of the practical reasons to be nervous. What if something goes wrong with this surgery, or, like anything in life, something catastrophic happens? I feel equally nervous if something detrimental were to happen, and I have cognitive impairments. In both scenarios, my son will experience a significant loss and trauma. Even if young, losing a parent is something nearly impossible to fully recover from. Also, having a parent who is physical

(4 days before surgery) This was a topic that I did find some information about online. However, I was not impressed. I think it's because I like to be as prepared as possible—I wanted it to be like climbing a mountain, where all your gear, all your food, everything you could ever need, could be laid out on your floor in an organized manner that you could take a photo of and post to Instagram. So, in this post, I’m gonna tell you how I prepared for this. I’m gonna admit that

I was able to set up an appointment with an epilepsy specialist. My appointment went really well. This doctor was incredibly kind, reassuring, and gave me a lot of space and time to discuss what was happening and explained what he thought was causing my symptoms. I had a lot of anxiety leading up to this appointment, but I felt incredibly reassured and ready to start medication. I felt validated and that there was a plan to prevent the progression of my symptoms. He also sugg

This is somewhat of a joke. When I had my first surgical consult, I was aware that it was probably logical to have this lesion removed. My goal was to continue with medication, eliminate as much risk as possible to interrupt my daily life, and to proceed with the surgery when my son was much older. I assumed it would be a lot easier when he was bigger, could understand more complicated concepts, and generally needed to be held a lot less. Unfortunately, I was not able to foll

It’s really hard to say when my symptoms started. Many things that have been happening for the last 20 years have now been viewed under a new light of being possibly focal epilepsy. For the most part, these patterns of symptoms I thought were psychosomatic issues related to complex PTSD. The earliest type of episode I can recall has been a pattern of feeling extreme amounts of generalized fear. This fear is not related to a specific circumstance or issue within my life. It fe