Hi everyone. I am 4 years post op. I’m wondering if any of you still having symptoms from youre avm. When I’m stressed my speech stop working or I sound like I’m drunk. Sometimes my right side get paralysed for a while. Thees are the symptoms I had from my Avm before and a while after the op. I worked my way back and funktion pretty well in life. What I’m scared of us if I’m having another avm or if this is normal. In sweden there are not mutch information about avm and there are not many who know what it is. Thats wy I’m turning to you with my question
With love / Monica
Hi Monica. I know with a lot of us when our brains become overloaded/tired that our deficits are magnified. Situations like food drop or aphasia will happen more often. If you were past 25 years of age when they operated…usually the AVM will not reoccur. Did they do a follow-up visit to make certain all of the AVM was removed?
Barbara, I definitely experience that . Seems like lack of sleep aggravates my headaches and visual symptoms. Also many of my seizures have been when I missed alot of sleep.
Monica, I think that it’s possible that even after treatment that there is still an area of the brain that is either damaged or injured. What type of surgery was used to treat the avm ?
Thanks for youre answeres. I was 30 years when I did the op. I did a embo of the avm that was located in my left frontal lobe. They did a angio to check 6 month after the op and everything looked fine. Guess I’m just worring in vain. Have been a very stress full time with less sleep and a constant worrying for my teen that have diabetes. Thank you again and a merry christmas and a happy new year to you all.
I wouldn’t say worrying in vain. If you’re getting symptoms that are similar to pre treatment it’s very understandable to feel worried I think.
Hi Monica, You don't "have" another AVM. You either have one or you don't. It does however take it's toll in other ways. I have worked my way back for decades and from many hemorrhages due to my AVM. Ever since the first one, decades ago, I slur my speech and kind of do a drunk walk when I'm tired. I work really hard on this out in the world, but when I get home, I let it all out, so to speak. Mine was always inoperable until 3 1/2 years ago when technology and an extremely skilled neurosurgeon were able to evacuate it. Overcoming things after a bleed are quite a bit different than overcoming obstacles after a craniotomy. Everything is difficult, but we must keep plugging away. I wonder too, if this is as good as it's going to get, and I hope not. Right now, I need a nap after just getting ready to go! Godd luck.
Monica;
AVMs can regenerate, although it's pretty rare in adults. Mine did - 20 years ago I had an AVM obliterated and it grew back again. It's much more common for it to happen in kids than in adults, although I was in my 20s when I had a craniotomy to remove it.
When I came out of surgery for the first AVM I couldn't move my left arm or leg, but recovered completely. I recently started having trouble with my left ankle and foot during dance performances and went in for an MRI and found out I have another AVM close to the same spot I had the first one.
As other people have mentioned, stress, exhaustion and your emotional state can affect how well you function, and it's much more likely that your symptoms are from stress rather than an AVM regrowing.
However, it's probably worth your while to talk to your doctor and see if he recommends an MRI just to make certain your AVM hasn't regrown. The neurosurgeon I spoke with recently told me he likes to keep tabs on his patients with AVMs he's removed for 5 years with once a year MRIs to be sure there isn't something reappearing.