I was 49, when I lost all control of everything from my belly button down. Thats when University of Michigan medical center found 2 AVMs in my spine.
I was diagnosed this year I'm 44 I'd had severe headaches had mri which showed I have a avm on the left side of brain ave not had a bleed and am now waiting on surgery to remove it which scares me!!!!!
15 I had 3 seizures before realizing it was there I’m now 16 and I haven’t had any seizures since but I had a bleed and a blood clot
Hi Amanda. Welcome to the site and hope you weren't too shocked when you received your diagnosis. I also have an unruptured AVN but mine is deep down in the Cerebellum and cannot be removed surgically. My AVM first 'showed' itself when I was 14 (I am 41 now) when I started getting massive headaches and sickness. A CT scan revealed a condition called Hydrocephalus, which is related to my AVM. But at that time technology wasn't good enough to tell it was an AVM. At 27 the hospital offered me an MRI which reavealed it. Living with an AVM is very scary and I try not to think about it too hard. But the knowledge that I have it is always there in my mind. I wish you the very best of luck with your surgery. Hang in there and let us all know how it goes xx
I Was 48 Worst Day Of My Life. I Use To Work Out 2 Hours Everyday Then One Day My Face Felt Numb And I Couldn't Speak Rushed To A&E That's When I Found Out I Have A AVM Plus 3 Aneurysms.
Hi Lulu thanks for your kind words. Must say my emotions are up and down sometimes I forget and then something will make me remember and then I end up crying then feel silly for getting upset am not looking forward to op @ all but I just want to get it over and down with to try and get back to some normality (whatever that is!!!!!!) They say it's urgent but it's been nearly 5 months since I was diagnosed. I wish u well and hope they find someway for your AVM to be treated
I found out at age 31, after having a seizure while playing basketball.
Thanks a lot Amanda. Currently I'm not hopeful. My AVM is deeply embedded and the doctors say there would be a serious risk of deficit. Fortunately my AVM hasn't given me too many problems yet. But I am always aware that it is there of course. It must have been really difficult when you were diagnosed with this having not known about it before. I'm wondering why your doctors have told you that surgery is urgent. Thats' enough to make you worry about it all in itself. I can completely understand you being so emotional. Its really hard to know what to do for the best sometimes and you must feel like you're on a bit of a rollercoaster ride. All you can do is try to stay positive and concentrate on what AVM-free life will be like I guess. Again, I wish you all the best. Will be thinking of you.
My daughter's AVM was discovered 32 weeks in utero.
I was 49 years old. I think that's a bit older than most. No advanced warning, just a very sudden "killer headache" ... within 30 minutes of the onset, I had passed out and assessed locally then quickly helicoptered to a major teaching hospital.
My daughter was 17. It was found incidentally when she had an MRI to check for possible encephalitis due to a high Strep Titer. It never hemorrhaged and was removed by excision when she was 19.
I was 27 years old and had been experiencing migraines, and a routine CT revealed the AVM. I was devastated, but chose to monitor it instead of operating. I wish I would have operated then- I never had a bleed- but a check up last year revealed it was growing and I had developed 3 aneurysms as well. One embo down at age 33, two to go and probably radiation after.
I consider myself lucky seeing as two people in my area that have mutual friends with me have had major bleeds from an undiagnosed AVM in the last six months. Ages 27 and 31. I am blessed.
Hi Mandi. Thanks for sharing your story. I have an AVM of the Cerebellum which is deeply embedded in my brain. For years I was told it was inoperable. But more recently my Neuosurgeon suggested that they could try Gamma Knife - but I would need at least 3 embolisations first to shrink the AVM. I haven't yet plucked up the courage to have any treatment. My AVM is unruptured (I am 41) and I don't really have any deficits on my everyday life caused by it. But out of curiosity I wondered whether you could tell me what your embo was like and whether you are willing to have another? Many thanks and best wishes for your future treatment xx
It was so scary in truth- because you don't know what to expect. I have the BEST doctors (my neurosurgeon actually did his residency on AVMs so he's an expert- lucky me!). Last thing I remembered when they were putting me under was crying because I was terrified- would I wake up, would this trigger a bleed?
I had a hard time coming out of anesthesia- they didn't give me anti naseau meds as is the norm and I dry heaved a lot- but other than that it was a lot of sleeping. They used Onyx glue with me- and you feel like your lungs are filled with burning tires smell or something- but they don't feel like they're burning, you just smell chemically. I just slept and slept and slept. I had a mild setback with some seizure-like activity but it actually wasn't too bad. The smell is expelled through your lungs and gets tolerable within 12-24 hours, and gone within a few days.
I am 13 days post-op and I feel great and am ready for my next one- which should be the week of the 16th. It's inconvenient, and you're sluggish and will get headaches, but rest and hydration is key. It's so worth it to me to be able to live a worry free life in the end with no risk of falling over with a bleed! THAT is more terrifying than an embo for sure!
I was 4 years old and mine already bleed
35 found after bleed.
Discovered at 21 after first bleed cavernoma (cavernous malformation) with mild symptoms.
Now I’m 23 cavernoma bleed again this month. Got worse symptoms weak left side with diplopia.
Thanks a lot. That gives me some food for thought. Very best of luck and hope you're soon AVM-free.
Less than a month after I turned 30.
18after a bleed, im 54 next month and had my avm obliterated 12 yrs ago only.