I had a 13 mm AVM rupture in my Occipital lobe when I was 22. No prior symptoms. It bled into the Occipital lobe and I went into tonic clonic seizures. Craniotomy and removal. At that time, MRI with contrast showed a faint enhancement in the frontal lobe.
I am now 43 years old. A recent MRI shows a 10mm cavermona in the left insular cortex connected to another AVM in the left frontal lobe.
I have been on antiseizure medication since age 22 but live in constant fear that this new AVM will rupture. I still suffer from partial seizures (bouts of Deja Vu and strange sensations).
Is anyone else dealing with multiple AVMs? I have awful insurance now and also live alone. I fear for the worst.
Hi @Balangkas. Saw your post and had to comment. I have had four AVM rupture, all in the brain. Rather than waxing on about each one and the complications with each let me just say, get scanned and stay on top of it! I wrote and published a book shortly after my stroke because frankly I didn’t want anybody else to go through the horrible mismanagement and maltreatment of the AVMs that I went through. I’m in my 40s now, married with children but it was a dark road and heavy lift! Read my story in the book “Malformation: when bad things happen to the right kind of people” from Westbow Press. Happy Easter!
I’m sorry to hear this and pray everything works out for you in this case… it is difficult but try and stay positive during this time and keep us posted on your journey as we are always here for you… God bless!
Hi. I’m just looking around to try to find posts that might support others and have come across yours.
Have you had any further doctor’s visits? There are definitely others here with multiple AVMs. I’d say that while it is very rare to have multiple AVMs, the most frequent cause for having multiple AVMs is in the case of HHT – Hereditary Haemorrhagic Telangiectasia. You might consider talking to your doctor about HHT and we have a group here for people with HHT to hang together.