4/3. I got referred to a trauma level hospital linked with UW hospital. Dr. Levitts I believe, memory is terrible. I have preop mri and other appointments this Wednesday.
I’m absolutely terrified but it will be over soon I guess.
Reading everyone’s posts is helping so cheer to that. Thank you everyone
Sending all the good luck vibes your way! I will be keeping fingers crossed for everything to go well!
Hi Pan, Welcome to Ben’s. Truly hoping the best for you. Don’t be afraid to ask for help. By doing so you help others. Best wishes, Greg
The best things you can do are to make sure you go into your op nicely hydrated – it’ll make sure that everything up top is properly lubricated and in working order – and then just remember that you’re going to have some expert people dealing with you and they’ll look after you nicely.
If I’m honest, I approached my operation like it was an all inclusive beach holiday! I was going somewhere warm (it’s never cold in hospital, is it?!) I was going to get free food and I would be waited on hand-and-foot. And that’s how it went!
If you do have some effects from the surgery when you come round, don’t get depressed by the idea that that’s the end of things: after there has been a good deal of invasion inside your head, things will likely be upset, swollen. When those things calm down again, stuff will turn back towards normal. So don’t think the worst even if it feels like the worst.
I think you’re doing very well: this sort of thing does frighten anyone: but you’re going to be in great hands.
Do let us know how you get on: we are here for you as much as you need.
Very best wishes,
That’s a good mindset to have and I’m going to do my best to follow it. A vacation does seem nice and I love food. Thank you for your reply!
Thank you so much. It’s wonderful to have a support system that understands
Thank you I’ll do my best to remember to update everyone with how it goes. Happy to get this over with.
@pandamc Best of luck be sure to bring some lip balm, lotion and your favorite crackers they never seem to give you enough crackers . Your lips get so dry in the hospital .
I have been there that is waiting to go for the operation to remove the AVM. It was very scary but I knew I had made the right decision. When the day came I felt good and wasn’t scared. When I woke up after the surgery I could move my hands and feet and felt so grateful for that! They kept me on good pain meds and I went home a few days later and was pretty OK. It took a couple of weeks to get my feet on the ground but I started to feel better each day. It’s five years later and I look back and see that having the operation was the very best thing I could do for myself and my family. All the best to you:))
You are absolutely correct. I made this choice and it’s the best option for me. Between 7/2022 and 3/2023 my AVM has gotten bigger. Plus the seizures it caused. I only see worse issues in the future so getting this surgery will be what saves my life. I have so much to look forward to. I’m supposed to get married 10/13/2023 (it’s a Friday the 13th) and I’ll be there, cane or not!
I will be thinking of you, and await to hear from you post op! Know our whole community here is with you in spirit! Take Care, John
There is so much hope in life!! Sending hugs and well wishes:)
Hope it went well - just seen the thread
Best of wishes for sure
Wishing you all the best & anticipate good news in the next few days… God bless!
I am officially home. Taking Tylenol every 6 hours. Can’t wait for these staples to come out. Very swollen.
Now for the longest part, recovery
True but hopefully you’ve done the most difficult part! Well done! Do tell us how you get on because it can help others in a similar situation to you.
Very best wishes for a full recovery!
Great to hear your home, and now the test of patience! I hope all is progressing well. Take Care, John.
Very glad to know you are home. Yes recovery is not easy, but very feasible. I had craniotomy on June 2022, I would say my recovery took around 12 weeks, although I did feel better every week. I wish you well.
Seems like my anxiety is going rampant. Mind races. Hard to go to sleep and when the anxiety acts up I get nauseated. “New normal” I keep reading about freaks me out if I’m being honest.
Thank you everyone for the support
Another update now that I’m 9 days post op!
Day 8 was night and day to the days before. Only pain I’m really feeling is my scalp. Feels right at times. My face is still a bit swollen.
I truly feel like I got lucky. I do still feel like a nap at half day but I went from taking Tylenol every 6 hours and oxy for breakthroughs to taking Tylenol every 8-10 hours depending on when I need it.
Staples come out on the 18th, 6 more days. I cannot wait because my fiancé will be able to share a bed with me again.
Anyone looking towards a craniotomy, the fear before the operation seemed to be the worst. Force yourself to relax and truly let your body heal.