Hey, I’m new here and only recently got accepted into an AVM Clinic/Treatment Centre. My auricular AVM was not too much of an issue from birth until my twenties, mainly it was just annoying to look at. Since I was 24, and for the last five years, my AVM developed into what it is now—something that has altered many things in my life to a significant degree. After years of unhelpful ER visits, bouncing back and forth to many unrelated specialists, biopsies, MRIs, and a lot of confusion (as well as doubts of severity) from many doctors, I’m finally able to take much needed steps to dealing with this issue with specialists who know how to help.
I am thankful that there is a community for this type of condition. It has left me feeling very alienated, as due to the risk from neurological symptoms and hemorrhage, I have often been left out and unable to attend to average things in life. Loved ones usually tend to complain if they have to be around me, and some have gotten fed up to the point where they won’t be around me because they do not want to deal with the mess and symptoms. I can’t blame them, I don’t want to deal with it either. Most of my twenties have been spent juggling responsibilities, college, a lot of other issues, and this very unhappy AVM that bleeds every day and has nearly ended me with bad seizure-like episodes. Yesterday it continued on bleeding for 7 hours. I know that auricular AVM’s are an uncommon form of an AVM, though I would love any suggestions on how to manage symptoms better while I wait for proper treatment. I’m so tired of the fatigue, pain, bleeding, infections, weird clear fluid leakage, seizure-activity, numbness in my face and body, and so on.
Sorry for the wall. Thank you for accepting me into this community!
Hey, @TVan welcome to AVM survivors!
I’d like you to expand a little on where your AVM is: for example, it is apparent on your face/externally or is it hidden inside? The reason I ask is because we have people in either situation and I can probably find you at least a couple of online friends who are going through similar stuff, on their face or near their ear (and probably 50% of us have an AVM that is hidden inside our head, so no shortage of friends there, at all!)
As for me, my AVM was inside the back of my skull, pumping blood into my right transverse sinus. The effects of this changed over time, starting with a pulsatile tinnitus, then leading on to a palpable pulse on the outside of my skull and then a dizziness before I managed to have an embolisation procedure to block it off. I just passed 7 years on this forum this weekend so that was 6-7 years ago! I’m in my 50s and it was not apparent before my 50s.
Hope you’re doing ok.
Welcome, great that you found us, but unfortunate you had reason to! I don’t have a lot to add beyond what Richard has stated. Mine was in the left temporal region of my brain, on the inner side of the lobe. I had no idea it existed until it decided to show itself via bleed in 2016. So quite different to yours in that respect. I had successful gamma knife and thought I was clear until this January 4th when I had Grand Mal seizure while at work. I’m now on Keppra, but have not had recurrence of seizure. I am in my 50’s as well, and am Canadian like you so say it was a big moment when I was eligible for the “discount” at Shopper’s Drug Mart! Take Care and don’t be shy on here, we have a huge amount of collective experience with great folks who will share their knowledge and experience. John