Hello everyone. I joined this group several months ago when my young adult son was diagnosed with a Grade 3 AVM that was resected 1 month ago. It was discovered due to a seizure and not a hemorrhage forturnately. The initial stages of recoverey went seemingly well. Now 4 weeks out he’d like to get back to grad school although he’s taking at least 6 months officially away from the program. He’s was recently attemping to do some academic reading and was getting frustrated with fatigue. Can anyone share their advice, personal journies, etc. about life after treatment? How long it took to get back or any other relavant information? Thank you in advance and blessings to you all. 
3 Likes
Well I can’t say my son was fatigued due to AVM but due to Keppra seizure med. He didn’t get craniotomy due to concerns of surgeon of how close AVM was to motor cortex so he stopped the procedure mid stream during surgery. Therefore he received Embolization and GK only. Fatigue due to procedures I don’t were the problem but then again your son did get AVM taken out so maybe there is a connection I am not familiar with. Hope fatigue goes away for your son in short time .
2 Likes
I did not have a craniotomy, but did have a bleed and can tell you a month is not a long time in our brain world. I was several months until I started to get energy back, and over time slowly took steps forward. Patience is key, and very difficult for most of us! When I first got out of the hospital I was sleeping about 20 hours a day, before my bleed it was about 5 a night. It all balanced out but did take months and months, but slow and steady is key! Take Care, John
3 Likes
Just speaking about concentration - for me, it was very tough for, I would say about six months
But, I did hemorrhage - yet, I “only” had a embolization to cure my AVM
There is no set guidelines for any of this - I was very fortunate.
I’d suggest pulling back & let him heal. It could quick, or - not so much
Just hope for the best
2 Likes
Hello,
I was very fatigued after the craniotomy especially one month out. My neurosurgeon said that experiencing extreme fatigue is normal as the brain is healing. He mentioned it was important to allow your body rest when we do feel fatigued.
I remember I would get extremely tired just being in the living room with family. So the doctor advised to take multiple naps throughout the day.
I love reading as well and I couldn’t read comfortably for at least 6 months afterwards. My vision would get tired and I would feel overall exhausted as well. But at about month 6 I started reading again little by little and started to build endurance. For the first 6 months the I allowed my body to just rest.
Hope I was able to provide a little glimpse on my journey post op.
Thank you!
2 Likes
Yes, I actually had my bleed in the middle of my masters degree (which was horribly inconvenient because it was during an extremely successful semester of producing some high quality philosophical work). I can’t say my return was a positive story. I was struggling with headaches, and I really was remarkably exhausted. Since I studied philosophy, I did struggle reading material and comprehending the intense argumentation. What I wish I did was I wish I waited a little bit to return. How long is relative to each person. I did discuss my position with each of my professors individually, and I made it clear to them what was happening to me. I don’t know about your son’s program, but my professors were very generous in working with me. Now, three years after my treatment, I have full comprehension of my philosophical work again, and actually, it seems my understanding of everything is actually better than what it was before all of this. I did finish my masters, and I work as a philosophy professor right now. I feel confident if I went back into finishing my PhD, I would be okay now. However, as I said, it will depend on the person. Wish I could have given a much more positive story. That said, I am also not saying you should stop your son from returning. Frankly, it is totally possible having the mental exercise will do him a lot of good. When I had my bleed, what I immediately started doing was playing cognitive games on my phone, playing word searches and crossword puzzles, wordle, and so on. I continued to do all of my reading as well. All of this in the attempt to keep my mind active, and to make it work to heal my cognitive processing. The mind is like any muscle, if you don’t use it, it will fade.
1 Like
Hi! I had a similar situation to your son. My grade 3 AVM was also discovered via a seizure, and was resected shortly after. I was in the middle a medical school application and was incredibly frustrated by the delay this caused - though more than anything grateful that I my AVM was discovered before rupture and that I healed quickly.
I returned to work as a medical assistant about 6 weeks after surgery, and while that went smoothly I strongly suggest he give more time before pursuing academics. I almost immediately jumped back into tutoring, taking physics classes and studying for an MCAT retake - so I can pretty confidently say that taking on too much is a bad idea for his academic performance.
The fatigue he is feeling will go away, but it’s possible he will always feel a bit more tired than he was before the surgery. It takes a long time to recover, even if he feels back to 100% in many ways. I do too! But fatigue will win out sometimes. I suggest slowly incorporating things back into his schedule and working with his doctor for pacing strategies. I’ve found success with incorporating ADHD attention strategies like breaking down tasks, taking regular breaks, meditation through yoga and increasing physical activity. Modafinil, a medication FDA indicated for sleep apnea and narcolepsy is also used non-label for chronic fatigue - that’s been pretty helpful for me.
I hope he continues to heal well and take his time with recovery. He will be better served taking longer to meet his goals - but I 100% believe he will get there!
1 Like