Quantcast

AVM Survivors Network

Craniotomy, the Aftermath!

A week and a half ago I had brain surgery for an AVM in my right frontal lobe. I’m a brass tacks, give me the facts, logic oriented person. The emotions are there, but reality is the priority. I am surprised at the thoughts this surgery has inspired and wondered if others had thoughts of the vastness of the smallness of it all - or was it just surgery? I was raised Christian but became Atheist at about 16 years old (I’m, 46 now) and it was a mystery to me if I were really an Atheist, or if pressed during a difficult time would I reach out for that bargaining in the sky that I was taught as a child to reach for. As it turns out, I am an Atheist. Thoughts of death were clinical, it’s over - nothing more to see here… and I was totally okay with that, unfettered. I hardly thought of it at all. That gives me great comfort. To know that it’s okay to die, I’m not going to miss anything and the world will go on as if I were never here before too long, Strangely liberating. I’m one of the lucky ones, in that I have been able to do a lot of interesting things and I’ve travelled a lot, so there is no real bucket list. There are things I would like to do, but nothing I need to do before I die. I think the most stressful thing about the surgery was trying to keep my family calm before the procedure and act like it was nothing so they didn’t stress me out. It worked out though and I am so lucky to have such a wonderful support group. Also, because this surgery deals with the mechanics of the brain, my insurance will be paying for a therapist. It would be nice to sort my thoughts out with a professional, I think.

The doctors and nurses at UAMS were absolutley amazing and I couldn’t have asked for better care. My recovery is coming along swimmingly and I am able to run quick errands and work around the house a little. I have been able to get off some of the medications so eating and sleeping will be leveling out soon. Other than that I’ve got all my spa products and tools on the coffee table with my computer and a television full of streaming stuff - keeping the lights dim and the place calm. I know I’ll get bored soon, and I don’t want to read much. What are some of the things you found to do for a month while you can’t do much? Thanks for listening to my rant.

2 Likes

Hey Shannon,
I too am a logical person (Well, mainly :smile:). It’s great to hear that, by the sounds of it, all things are travelling along fairly well for you. That’s a bonus, a massive bonus. For many of us post craniotomy things weren’t so great, that is, they certainly weren’t for me. So be very thankful for that BUT just be prepared that for some there can be a bit of a honeymoon period, then as things settle management can become a bit more if an issue.
I agree with your idea of seeing a professional to help sort your thoughts out, I had too. It can’t hurt. I tried to have a range of things that I could vary between to try and keep myself occupied so that I didn’t find myself stuck in a persistent hole. I had yo learn to pace myself with activity and this I found really difficult. Prior I had 2 speeds, go and stop. Go slow was all foreign and is something I still battle with.

It’s good to have you onboard.

Merl from the Moderator Support Team

@Shannon

Hi! It sounds like you’re doing nicely but I agree with all that Merl said… you will get more difficult times, so expect them a little and don’t be put off when they kick you. I like the idea of yours to take up a bit of counseling. It’s a good idea.

I had an embolization rather than craniotomy so I didn’t have the level of recovery that you are looking forward to but I did worry myself stupid pre-op. To try to counter that a bit, I set myself a small making project to do. It was weird, so I won’t recommend you do the same project but I thoroughly distracted myself with thinking about the project rather than surgery. It needed me to order parts online and actually, receiving the parts by post was one of the best bits. So, of you can think of a little making project you’ve fancied doing (but never had the time) do it. It can be small, trivial, but good at keeping your mind active.

Very best wishes,

Richard

1 Like

Congrats on your sucessful surgery! I had a right frontal lobe embolization & avm craniotomy in 2004. A therapist is definitely helpful. Between therapy & a great neurologist I learned so much about how the location of the avm had molded & affected my personality. Thankfully they caught mine while I was in my 20s & I was able to recover from the surgery very quickly.
For the first few months I played video games to work on my hand eye coordination. I also did a lot of crossword & logic puzzles. Considering how normal i felt after the surgery I was shocked at how it affected my depth perception (something I didn’t realize till I tried to drive about two months after surgery).
The first 5 years were a roller coaster. Once the honeymoon period was over (about 45 days) I started having minor residual issues like depth perception issues & vertigo. It’s been frustrating, but very minor compared to some other stories you’ll hear.
My neurologist has encouraged me to continue playing logic games, learn a new language, etc. to keep my brain healthy. There are a couple types of dementia that can easily develop in people with frontal lobe damage so keeping those neuro path ways active is important.

2 Likes

Thank you for your responses. Things are getting back to normal, or at least it seems that way now. I’ve got lots of projects to work on in the next month - mostly cleaning / organizing. I don’t have money for shopping - that would be cool if I did though! I like to take self portraits and I like to write. Those are the ways I express myself. I was able to get my hands on some really great graphic arts programs and I’m watching tutorials on those. The edit that I posted below was done before the surgery and it represents how I felt about the idea of not surviving the surgery. I had come to the conclusion that it was okay if I didn’t survive. But I did (survive), and now it represents my will to survive and my strength in the face of fear… or something like that. I have thought about hooking up the wii and playing some video games - I think editing photos is my video game equivalent, but we’ll see how fast I get bored or frustrated with that. My husband is a touring musician and will be gone this Friday for the weekend. It’s the first time I will have been alone in two and a half weeks and I can’t wait. My mom wants to come up and stay with me, but I would really like the time - but I also don’t want to deny her the opportunity to care for me during what must be a much scarier time for her than it has been for me. I’m still swollen and headachey and I don’t like loud noises, bright lights, or interactions with more than one person at a time - but I think I’m always that way. So, things are good - I almost don’t feel I have the right to have bad days because of how fortunate I am to live in such close proximity to Dr. Suen and Dr. Day. I’m lucky and I am very aware of how lucky I am. Tomorrow I am going to the local community college and start the process of registering for a semester. I love school, and why not - may as well get some credits under my belt while I can’t do much else. So, I have been very conscious of the down time I have and I have been coming up with some great ideas to use the time. I know how easily depression can slip in at times like these. And I love your idea of learning a new language. I am always working on my Spanish, and I have picked it back up since the surgery - that’s a great idea. Thank you all for your words of support and advice.

Shannon Shannon%20black%20and%20white%20pre%20surgery%20pre%20op%20if%20I%20had%20died

2 Likes

I think your photography is great. That plus college sounds like a good distraction!

All the best!

Richard

1 Like

hey there and Welcome to the Club! i jest because it really kinda sucks, but also there seems to be a great group of people here- if u give them the chance (i personally dont do it enough). ive had a feeling alone in the world because there just isnt alot of people who have to go thru this- BUT people here are. Ive gotten thru the last 20yrs by sheer stubborness. stay as positive as possble- be stubborn here no matter wha- stay possitive. i have fond being at peace with myself and this a new chapter in life. recognize ur limitations and work on them- stubbornly, but accept them for what they are- cuz things will be different. dive headfirst into the things u love most- u mentioned portraits and writing. i personally love writing as well and find it theraputic(pretty sure i spelled this wrong) as well. also DO NOT do too much at once. i went back to everthing too quickly, looking back i should have been more patient. approach this a marathon not a sprint. and keep the faith- even an atheist needs to keep the faith in THEMSELVES.

keep truckin n have a good one
-cody j

3 Likes

Hi, everyone!

How incredibly lucky to have this site today. How I wish the internet and this site existed after my urgent AVM crani! You are so right. It can be so hard to recover and reintegrate into life after treatment. Dealing with the new you is difficult enough. Learning to accept the differences is a big step in the right direction. Focus on what you CAN do. The hardest part, at least for me, is dealing with other people who have little or no understanding of what we are going through, even family and close friends. For me, it can be even difficult explaining what I experience! (And, it has been 25 years!). Don’t let others place additional barriers to living. Do what you need to maintain physical and emotional well-being and strength.
Have a full life!

2 Likes