Hello fellow Warriors,
How long were you all off work for after your AVM removal? I will be having my AVM removal surgery within the next 2 months, my Neurosurgeon said if the surgery goes well, I’d have to take ~2-3 mts off. I’m a behavioral interventionist, in a high school.
Also if you don’t mind sharing, what was your recovery like? My AVM is 3cm, left occipital/temporal lobe. I’m a relatively healthy, youthful 43yr old☺️
Hi! You’re having a craniotomy?
Mine is also on the left side of my occipital lobe.
But, I “only” needed an embolization - which is quite different from a resection.
I’m sure some other folks will chime in. But, recovery isn’t very linear. I’m also 43 now, mine did hemorrhage in 2020 & that’s when it was discovered.
Just wanted to say hello mainly & to be easy on yourself - all of this is a very acquired taste
Rear occipital. I was back to work in 6 weeks. It was too soon, take the two months and work on your math.
Hi! I had my craniotomy in November of 2022. My surgery was very uneventful and left hospital within a couple of days. Worst I had was headaches when I woke up. I felt really good and planned on going back to work asap but then I got a blood clot in my lungs and that kicked my butt. I ended up going back to work a little shy of 3 months. I would recommend planning on the full time off and going back early only if you’re up to it. When I signed up for my fmla the company encouraged me to get as much time off as I could because it was easier than requesting more time off if I changed my mind.
it has been about seven years since my AVM ruptured and I’m still unable to work. I mostly stay at home as a self-employed stock and forex trader and I also do some typing jobs as a side hustle to make money. My mobility is getting better every day but my finger dexterity on my left arm is still bad, it got better but it’s still not good enough to do large tasks, which is why I’m still not working. My rupture was on my right fronto parietal lobe and it was a grade 4 on the Spetzler Martin grade, so it was pretty big and serious. My doctors say it will take a long time to heal completely and it won’t be a full recovery.
Then use that information as a ‘baseline’. Some people can recover amazingly well, where others can have issues. I’ve required a few neurosurgeries and none of the recoveries have been the same. I tried to push my recovery, to return to work sooner. But I pushed too hard, too soon and something went ‘POP’ and I ended up back on the operating table.
My advice: Listen to your body. It will tell you when your limits have been reached. Learn your signs and don’t ignore them. In your ‘~2-3 mts off.’ learn what works for you. Learn the best way for you to manage, be that medication, be that ‘timeouts’, etc, etc . Find the tools that work for you to manage ‘you’.
The reality is you might come out of surgery and wonder what all the fuss was about, but on the off chance things aren’t so rosy on the other side:
Setup your environment: Post craniotomy I had a chronic light phobia. I needed darkness. TOTAL darkness. Noise/sound was also an issue. Have a quiet space just for you. Somewhere you can isolate.
Be Prepared stock up on foods you like. Think of soft foods too, for some patients the jaw muscles can be affected, so no tomahawk steaks for a while If you are going to have technology available, make sure you have easy access to cables/cords etc. The last thing you want is to be hunting around for a cable in the bottom of a cupboard.
Setup a ‘Back stop’ network If you are in need and can’t do yourself, who could you call on. Family, friends, neighbours etc.
We all hope/wish/pray none of this is needed and you simply slip back into the life you have now
If that is not the case it is much easier to setup and establish all of these things PRIOR rather than trying to set them up whilst you are trying to recover and finally,
BE PATIENT WITH YOURSELF That thing called recovery is NOT a straight line of progress. There will be good days, bad days and OMG days. We need to learn to roll with the punches.
Merl from the Modsupport Team
Hey, we are all different but if it helps, I had my craniotomy in February 2022. I went straight back full time after 2 months and was so tired, I wish I’d taken another month. I found staring at a screen all day was too much and I needed regular breaks. The tiredness hit me like a brick. Just see how you feel but if you can take longer I would do it. You’ll know when you feel right. I am certainly not complaining as I was very lucky and appreciate that I had an easy time compared to some people. All the best and take care x
3 1/2 weeks, back at part-time. Five weeks back full time. AVM rupture right occipital lobe, 52 y/o at the time. I was lucky… I had a fairly smooth recovery. Took about eight weeks before my husband would let me drive.
I had my AVM removal @ 44 years, last year. Cerebellum middle - Right. I was in the Hospital for 4 days, and in Apart Hotel for 10 more days (International patient) @ Cleveland Clinic Ohio.
I would say I started virtual around 1 month after surgery, and started going in to meetings about 2.5 months after. I had to do a lot of therapy for my equilibrium because the operation occurred in my cerebellum…. Got it back later thankfully
All the best to you