Just hoping for a bit of advice really…I suffered a brain heammorage in 2002 at the age of 22. I was out one night with friends when all of a sudden I felt the most horrific pop in my head followed by an indescribable pain. My vision in right eye started to flash/ blur and I momentarily lost consciousness. I was lucky, as aside from the worst pain I have ever experienced, I didn’t suffer any fits or strokes. Cutting a long story short, at the hospital they discovered a ruptured AVM towards the back of my brain-left side. I had a craniotomy which was unsuccessful as the surgeon was unable to get to it. I then proceeded to have 3 lots of embolisations followed by gamma knife. I was finally given the news in 2006 that my AVM was obliterated. Everything has been fine since and I’ve gone on to have 2 children. Since having the heammorage, I have had bouts of suffering with the flashing vision in my right eye. Sometimes a migraine will develop and the pain from this feels like it’s in the spot where my AVM was, other times I’ll just have the disturbed vision and nothing else. Just lately over the course of 5/6 months I have been starting to get this disturbed vision in right eye 4/5 times per day. I have seen my doctor who is now going to decide on wether to send me up for a cat scan… Now all the info I’ve read on AVM’s I can’t see anything that suggests an AVM can grow back. I am just a little worried that the same visual disturbances I had at the time of the AVM I am getting now. Any advice/ similar stories would be a great help.
Lucy, From what I have read and learned, if they do not get all the feeders out, yes they can grow back. However, I am not an expert, but it sounds like it might be what you are dealing with hon. Keep us posted. Pat
They can regenerate if not all of the AVM is removed. Also, if the brain is still developing they can also regenerate. Most brains stop developing around age 25 for females. Chances are your problems are related to scar tissue not the AVM itself. Please keep us updated. Oh and you have just been added to my prayer list!!
Hi Lucy, Sorry to hear about your current situation. My son's AVM ruptured and was taken out via microsurgery (craniotomy) when he was five years old. After the operation and based on the angiogram taken, the neurosurgeons told us that his AVM has been obliterated. However, last year, after 20 years, another AVM on the same site has been accidentally discovered after the ophthalmologist sent him for an MRI scan. Luckily it has not ruptured. The neurosurgeons mentioned that the scientific evidence 20 years ago was that AVM does not re-grow. However recent evidence shows AVM can re-grow. As Barbara mentioned above, his growth spurt may have contributed. He had another microsurgery to take out his AVM which has grown much larger. Fortunately the surgery was successful and he is now recovering with minor neurological deficit. I have lots of respect for the work the neurosurgeons do.
Please get your scans done soon. I hope that it is not AVM. But if it is, I hope they can do something about it. I wish you all the best. Marissa
Hi Lucy, I have always been told that AVMs dont grow back unless they havent removed it completely AND that it is generally something that can return in children as their brains are still developing...my neuro had me do scans after my surgery to check it as i was 31 and she mentioned she was worried as i was not young or too old so it was just a precaution.
Near 5 yrs later my last MRI in August was clear from any AVM regrowth etc but i was told it had been removed in full...yes i do get some days i get side affects similar to the past or when i suffered my heammorage, which i know is scary...keep us posted and i will pray for you that all is okay...God bless!
Hi, just wanted to reconfirm what others have stated is what I was told from my neuro after my microsurgery. AVMs don’t grow back if fully removed. This is why shortly after surgery they usually do an angio within a day or so to confirm before they release you home.
Thank you all for your comments… Am probably worrying over nothing and my doctor didn’t seem overly concerned that my vision would be anything to do with a regrowth etc. An angiogram in 2006 confirmed obliteration. I’ll probably take the cat scan just for peace of mind nothing else is happening.
Again, thanks for your replies x