Hi, new to the group. I am in my 70’s and have a few questions. I have a left brain AVM which was embolised in July 2020. I am still experiencing pins and needles in my right leg (mainly my foot) with occasional painful tingling which sort of rolls up my leg to my hip then up to my chest, shoulder and eventually my neck and head (only on the right side). I am still having the odd seizure as well. My surgeon tried to wean me off Kepra when I was discharged but given my reaction when reduced to 250mg twice a day, he put me back on 500mg twice a day. Does anyone else have similar symptoms? Is this forever? I get so tired and am unsteady on my feet, I also have trouble finding words which is not like me. Am seeing my surgeon next week but would like to hear from anyone else who has similar problems. I keep hoping they will go away but not so far.
Hey Barb,
Welcome to Ben’s Friends.
My name’s Merl, I’m a member of the Modsupport Team here on Ben’s and I’m in Adelaide.
3 month’s post surgery is still really early in your recovery. A brain injury is unlike any other injury. With a broken bone 6-8 weeks later and it’s all healed, but our brains can take much, MUCH longer.
I had a craniotomy back in '96 and I’ve been symptomatic, one way or another, ever since. After the initial surgery… …WOW. I could not believe pain like that existed. My symptoms included all those the same as yours (and a few others, minus the seizures). I spoke to the surgeon who told me it was all OK, only it wasn’t, and 3 months later I was back having further surgery. I eventually recovered enough to return to work on ‘modified duties’. I had to learn my body’s new signals and rest when I needed it. If I didn’t rest my symptoms multiplied, 10 fold.
I have all sorts of (what I call) odd sensations. Hot and cold flushes, tingles, numbness, visual effects, light sensitivity, odd nausea etc and of course headaches. The intensity of all of these ‘sensations’ varies wildly and in no set combination. I have learnt what works for me (and what doesn’t) in managing it all. Some days that management is simple, some days it’s not. I MUST listen to my body because when I don’t Ohh, it is not good. My body tells me “Lay down or I’ll put you down…” and it puts me down HARD.
Merl from the Modsupport Team
Hi Barb
I only just wrote about memory issues today struggling to find words. I have never had that problem even after surgery until the last week or so since I started working again. (5.5 months post embolisation so it’s weird it started so long after surgery).
But I will say that I had a lot of “new” strange stuff happen post surgery…some scary stuff but it mostly all went away slowly over the months. Everything mostly got better
I will say that post surgery, I had a pain down my leg for months and radiated into my male parts. It wasn’t pleasant and I thought it would be there forever but it’s also disappeared. I think it takes a lot longer (sometimes) to get over surgery than the surgeons realise
Make sure your surgeon knows everything you experience and i hope your surgeon has some good news for you
Best wishes hoping it’s all ok and clears up for you 
And I’m in Brisbane
Hi Barb:
I’d like welcome you to the AVM Survivor’s group. We are here to offer you support and encouragement. You may not believe it but you are on your road to recovery. That road is sometimes rough and bumpy but it will smooth out after a while. My AVM journey has been almost 6 months long and I still have issues. I ain’t perfect, but I’m dam good. We’re here for you. Wishing you the best of luck to you.
Sharon D…