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

It’s the strangest thing, it’s the end of week, and I’m just now considering going back to work. This thought feels exhausting and it makes me nervous. I also financially don’t have the luxury or more time. I’m just starting to feel confident being with my son alone again for short periods of time. This is disappointing. I wish this moment had come a lot sooner. The times that I’ve been alone with him it’s clear that after a few hours I am incredibly fatigued and exhausted f

I’m going to try to simplify this. Before my surgery, I set this imaginary timeline that this would be the week that I felt like I would be back to normal and back to work. I told my coworkers this as well. I thought that if I had this mentality, I would manifest a quick recovery. I’m not back to work. I cannot watch my son independently. Parenting reality: Even after lifting restrictions are technically gone, very minor physical activity causes significant problems for me, a

I was so hesitant about the brain rehab. Mostly because I don’t want anything more to do. I don’t want to arrange more childcare. I don’t want to ask for more help. It all just seemed overwhelming. I started speech therapy. They’re working with me on my cognitive delays and, of course, word finding, expression, etc. I’ve now seen a brain injury-specific occupational therapist. I had no idea what they did. I thought occupational therapy was more for the upper body/ fine motor

What to bring to the Hospital Backpack or large bag for stuff - yes to this Long phone/electronic charger with block Headphones for music/ebooks, etc Slippers - yes to all of this; I hate when they take me to the MRI and make me walk on my bare feet on the dirty hospital floor. Cardigan or light robe or similar that is easy to wear with a gown and wires for warmth and coverage - I didn’t use this, but I believe I would have I was in the hospital longer or needed extended PT w

Here is a list of things that will increase the pressure in your brain: Picking up or maneuvering your toddler, even on the floor Getting up and down from the floor. Tracking and following your toddler visually. Turning your head rapidly, either to avoid damage from your toddler or keep up with them Chasing them, dancing, helping them jump while sitting down and not lifting will increase your ICP Bending forward to feed, help with potty, any physical task really while bending

This is the week that I had my surgical follow-up, and I started speech therapy. I’ve been somewhat surprised by what I was capable of. It seems like my pain was fairly manageable. I had a really hard time relaxing and staying away from my toddler, but I didn’t feel like it was harmful to be in his company. My surgical follow-up ( I know it is simply talking about the surgical process) went well. Some questions were answered, and she said overall progress looks good. I was t

Today is a quick update. As far as I know, I haven’t had any seizures. I think a lot of things that have been troubling that I’ve been experiencing are related to the amount of medication I’m on. I have updated my surgical and neurological team. My neurologist wants me to come off any extra centrally- acting medication. I’ve been off pain medicine for a while now, outside of Tylenol. Recently, I was approved to add ibuprofen. With this transition, I’m trying to get off the

Interestingly, I’m having a lot of trouble determining how many days it’s been since surgery. I keep counting over and over again, and it doesn’t make sense. I think it’s day 10. I’m finding that I’m doing more than I should. There are times when I feel completely normal; my head is clear, my body feels fine. I feel like I can have a clear conversation and there are no barriers. And then suddenly have trouble word-finding and stutter. I’m slow, my coordination is off, and it

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