The Reality Of Recovering After Brain Surgery…

The Reality Of Recovering After Brain Surgery…

I kind of remember being rolled into my room in the ICU after my craniotomy. There was just a bit of a fog. I knew what was happening, but I was just not totally there. My family was on their way to my room and I remember getting sick so they had to wait for a little bit until I stopped throwing up.

Once I was well enough I was given some food to eat and my family was with me. I know they were because there are some pictures. In my mind, this was the worst and I would be on my road to recovery. The first few days are still a bit of a jumbled mess in my thoughts. My family visited, but mostly everyone lived three hours away, so they weren’t always there. I kind of remember nurses taking care of me and I kind of remember my family being there, but it’s not really strong in my memory.

One of my first real thoughts was my concern that I couldn’t read anything. My sister-in-law brought me a gift. It was a picture with a saying on it. I smiled and thanked her for it, but didn’t tell anyone that I had no idea what it said. Now, I know that it says “Not to spoil the ending, but everything is going to be ok.” I’m still not ok, but I’m a lot better than I was those first days. Nurses had to read menus for me so I could decide what to eat. Even that was difficult because once they got through the list I had forgotten most of what they told me. I just tried to pick something that sounded good as soon as they said it.

I knew something was wrong when some doctors came to visit and started asking me what items were. One doctor showed me his pen and I couldn’t tell him what it was. They asked me what I did as a job and I couldn’t tell them that I was an accountant. They showed me a cell phone and I could motion the use of a phone, but I couldn’t tell them what it was. Words had just escaped me. I was completely aware of things, in my mind, but the words were not always there. I could talk, I could make sense, but not always come of with the right words I needed to. This really worried me because I remember my grandma’s speech after she had a stroke. She refused therapy and she was never able to fully communicate with us. It felt the same way. I knew what was there, I just couldn’t say it.

A speech-language pathologist started to work with me in the hospital. She was wonderful to work with. We worked with writing the alphabet, numbers, reading simple things, identifying items. It helped me realize my memory was not great. I started trying to write things as I would remember them. If someone asked me a question I wanted to be able to tell them. She saw these notes I was trying to write down on any paper I had and the last day I saw her she brought me a notebook so I could continue writing.

Physically, I was in good shape. They had me walk around the hallways and do their testing to make sure I could get around on my own. One of the nurses took me for walks to the coffee shops in the hospital to get me out of my room. Toward my last week in the hospital another nurse helped me into their bathing area so I could take my first bath since my surgery. It felt so good to get cleaned up. I still couldn’t wash my head because of the staples, but the rest of my body felt so much better.

According to my doctors, after seven days, I was ready to be released from the hospital and go home. I was happy to get out, but scared because I had no idea what came next. I would continue with a speech therapist in the area where I live and just try to keep getting better. Words had started to come a little easier, but everything was still slow. My son and I had a good laugh about how easy the cuss words came out of my mouth, but I was completely struggling with words like Facebook and Snapchat. I continued to think back to my grandma and her stroke. Shit was one of her favorite words, but she couldn’t say my name. I think that was one of my big concerns. As much as I tried, what if I couldn’t do it.

These were my first days after my craniotomy. Time and working hard have helped. I went back to work two and a half months after my surgery. It’s been hard, not everything is easy, but I do what I can and try to get back to my old self. I am so much luckier than others and I try to remember that every day.

Brain Surgery, Not What I Expected…

Brain Surgery, Not What I Expected…

I have had several surgeries over the years, so I thought I knew what was coming when I was told I should have surgery to remove an AVM(Arteriovenous Malformation) from my brain. They usually put you to sleep, fix what is broken and when you wake up, you recover and go back to normal. It turns out it wasn’t what I expected.

My neurosurgeon explained to me that I would need an awake craniotomy because of the location of the AVM. It was in my left temporal lobe area which deals with speech. They would put me to sleep to get things started, but also have the ability to wake me up during the surgery so they could test my speech to make sure the area they needed to work with would leave my ability to speak intact. If my speech was affected they would stop the surgery before they removed the AVM.

Getting ready for surgery was easy… put on the gown, get the IV in, and wait for them to take me. My family was with me and I tried to keep the mood light because it was easier to keep everyone smiling and laughing than crying and worrying. We had just lost my dad to cancer six months prior and the last thing we all needed was more worry of loss.  I wanted my son, who was nineteen at the time, to remember me as the mom that was always there for him, strong and happy…just in case it was the last time. I refused to be rolled out of that room with tears in my eyes.

The nerves came when they rolled me into the OR. I remember the anesthesiologist asking me if I had any anxiety…yes. I don’t remember much about being put to sleep for the beginning of the surgery. I knew they would be starting with an angiogram. The neurosurgeon would insert a catheter in the groin to run up the artery to the area in the brain they would be working on. They had to do an embolization on the arteries and veins connected to the AVM in order to stop the blood flow before they could remove it. I do remember waking up during the angiogram near the end, feeling some of the pain of the embolization. The neurosurgeon spoke to me, asking if there was pain and letting me know it was almost done.

The part I expected to remember, I have no recollection of. They were going to ask me questions so they could map my speech to make sure the surgery could go forward with the resection of the AVM. I do remember being unable to move my head and my face being completely covered with a blue drape. After the fact, I was told it went well and the AVM was gone. Unfortunately for me, I remember being awake during part of the craniotomy and becoming nauseous and gagging. With my skull still open, the coughing and gagging caused pressure on my brain and a bleed of one of the veins. I remember the neurosurgeon asking me if  was going to vomit and telling other staff to check on me. I don’t remember much after that until they were wheeling me out of the operating area to take me to my room in the ICU. Things were a little hazy, but I know my family was there. I got sick in my room. I remember very little, but I was glad it was over. It took me some time to realize that I wasn’t recognizing things properly, I could not read things that were written and my words were not coming out quite right. I wasn’t sure how to react…was this normal, was this going to be me, should I panic?

Brain surgery is definitely not like other surgeries. When you have heart surgery, you can explain what feels wrong. When you have a broken leg, you can tell the doctor what still hurts. When you have brain surgery, you might know inside, but you can’t always tell people what is wrong. The first few weeks were the scariest, the time after was frustrating. I am nearing two years and I still struggle daily, aphasia, epilepsy, anxiety and depression have been a constant part of my life. I hope I can explain some of that to any of you that read this.

Trying This Blogging Thing Again…

Trying This Blogging Thing Again…

I started this blog at least a year ago. I wrote a few posts, then I deleted them. I wrote some more and deleted them again. I made my page private and thought I would just post for myself. That didn’t work at all, I completely gave up. So, here I am again. Maybe it will stick this time.

I think part of my trouble in the early days was because I was struggling with aphasia after brain surgery. I thought writing would help me get through it, but it was doing the complete opposite. It pissed me off, it frustrated me, it made me feel completely incapable. I still deal with mild anomic aphasia, but I know that I have it and I’m learning to live with the fact it may always be there.

I also now have epilepsy, something I am really struggling with coming to terms with because I don’t ever really remember being told I could end up having seizures after my brain surgery, but I have no choice in the matter now. I am nervous and anxious on a daily basis because I worry that a seizure will decide to pop up when I least expect it.

This new life started almost two years ago with my first ever seizure at the age of 44. It took a second seizure, a couple EEG’s and an MRI to be diagnosed with an AVM(Arteriovenous Malformation) in the left temporal lobe of my brain. I had an awake craniotomy to remove the AVM, but the expectations that I had of my life going back to normal were simply thrown out the window.

I can’t say life is horrible, it’s just not the me I expected me to be at this time in my life. I am so much more fortunate than others, but I have my bad days. I’m lucky to still have my job, I will be able to drive once I am six months seizure free, I can do anything I could do before…sometimes just not as quickly. I have to writes notes now so I don’t forget things, I have to ask people more than once to repeat themselves because they talk too fast so I can’t understand them or they say too much at once for me to remember everything. I avoid large groups and loud noise because it is just too overwhelming. I found I was really starting to isolate myself because I was afraid to be with people, but I began to realize that not being with people was probably worse.

This is the life I’m trying to deal with right now. I’m hoping to keep moving forward and make the rest of it mean something.