Sheila had a brain haemorrhage following brain surgery to take out a vascular tumor or cavernoma. Her story provides reassuring advice to those who may have gone through a similar experience.
A little bit about Sheila
My name is Sheila and I am going to tell you about my brain haemorrhage story and my journey before and after getting a tumor taken out with brain surgery. I was diagnosed with a cavernoma in April 2021. Before my brain bled, I had no idea I had cavernomas in my brain.
What is cavernoma?
Cavernoma are little vascular tumors that can bleed or ooze out, causing different symptoms. When my cavernoma bled, the first symptom I felt was prolonged headache that lasted 6+ hours. It got so bad, I could not sleep and no pain killer would relieve it. The second symptom was my face being a little droopy for a couple days (only noticeable by my sister) and my right leg feeling fuzzy. I went to the ER for a migraine and came out finding out I had a tumor that bled.
Penn Medicine wanted to monitor me before considering having an operation. The location was in a tough place in the mid brain, so they didn't want to rush this if it wasn't totally necessary. Penn decided they needed to operate on me, and I got second opinions from Stanford before deciding to get surgery. My surgeon was hired at Penn Medicine that very year, and happened to be a cavernoma specialist, which is not common. He is a vascular neurosurgeon who trained under the BEST vascular neurosurgeon also specialized in cavernoma. Penn Medicine later became a center of excellence from the angioma alliance.
I had an awesome recovery; however, my only deficit was double vision post surgery due to the location of the tumor and the bleeding. I was in the ICU for 2 weeks post-surgery to recover. I saw an eye doctor for my double vision who specialized in brain injuries for vision therapy and got prisms in my glasses. I also saw a physical therapist to do light workouts with supervision, and an emotional therapist for the emotional recovery which has been the hardest part of this entire journey.
Using creativity and my support system
Today, my favorite hobby is texture painting which I've done for my family and myself. My parents, sister and brother visited me daily in the hospital and were an incredible source of support. My boyfriend, who met me right before surgery, supported me the whole way. My closest friends and the best of them all - my dog, Louie, also never left my side. I've also joined the angioma alliance Facebook page to talk to others with similar experiences.
The highs and lows
The most successful part of my recovery journey has been being able to have all my function and be able to go back to work as sharp as I did, only 2 months after being in the neuro ICU, and being able to appreciate the time away to reflect on my life and priorities.
The emotional toll and PTSD this has taken on me is one I'd never wish on anyone else. I was on such a high after surgery. I was calm and peaceful even through the pain I experienced in the ICU, the mild complications in my ICP and vision, and the fact that I had just had BRAIN SURGERY. When I finally went home to recover, I cried in happiness and truly felt at peace, that everything was OK. However, months later, the events caught up to me and I started feeling the emotional roller coaster of anxiety, depression and feelings of worthlessness. I also felt a lack of self-worth when it came to my double vision and not being able to drive or see like before.
What is missing from recovery
I feel like assistance in the emotional aspect of my recovery was not easy to solve.
My advice to other survivors
Some advice I have for anyone going through this is to make sure you believe, whether it's spiritually or just belief, that the surgery or recovery is going to go well. When I was in the ICU for weeks, I was scared I'd be like that forever (blurry vision, no balance, high brain pressure, intense headaches, being fed by my mom) and I remember thinking 'no, there is a light at the end of the tunnel'. There was light, even when it felt hopeless.