Celebrating today since it has been three years since I had my AVM removed. I consider myself extremely lucky for this and wish everyone who is still fighting or recovering the best.
Throughout these past 3 years every strange sensation, vision issue or headache, makes me worry slightly. I seem to have this irrationalized fear over having another seizure and (although I know it isn’t possible) having the AVM/aneurysm reoccur.
I want to be able to trust my judgment in how I feel again so my question for you all is this: How do you go about trusting your own body again? Is it possible or will the fear always still be there?
Great topic! I wish I were further along to have an insightful answer. Only 6 months and not AVM free. But I am already asking myself the same thing. I was an athlete and thought I had a strong connection with my body until this. Now I am afraid of everything. I hope someone can offer some positive reinforcement to our wary feelings.
This has taken a long time for me. It's been 22 years since I've had the surgery. I've gotten beyond questioning every strange feeling in my head, but the process was slow and gradual. Just one day, I realized that I was no longer having strange reactions to every headache. After seeing what others have faced in these pages, I feel very fortunate.
However, I am still learning about what this thing did to me. Lately, I've been working with a psychologist. I wish I had started this much sooner. It turns out I had some ADHD, but it was magnified during the operation. At first, I was very upset. But, I've been learning to adjust to the ADHD.
Anyway, it's good to see that you've made it through 3 years. That is excellent. Keep going strong and pushing yourself to do things. The most important thing I've found is to keep pushing myself to improve at something.
I have major trust issues i.e. if someone says they have a headache that's extreme enough to go to the doctor, I'll tell them to get an MRI or C-SCAN and have them check for an AVM...I know...as if.
One thing that might help is I read recently that doubting yourself costs way too much.
also, I read, regarding fear, we are only born with 2 fears: 1-falling down and 2-loud noises; everything else is learned. I figure that anything learned can be unlearned or relearned differently. I'm not there, but I believe it's possible.
I always get paranoid whenever I get an unusual feeling or pain in my head. Or even any part of my body, I always think of the worst outcome first. It's not necessarily a bad thing though.. after having headaches everyday and ignoring them for years until it led to my AVM rupturing, it's good to be on alert. I know it can get in the way sometimes, but I think it's worth it.
Hello, you say you have a fear of having a seizure. I am 20 odd years down the line from my avm, I think that if you can get through an avm, surgery etc you can get through anything and that includes a seizure. I don't fear seizures as I've learnt to listen to my body and adapt my life to minimise the likelihood of them happening. That doesn't mean I'm seizure free but I know that I will never be as unwell as I was. Also I have learnt what my triggers are - do you know what yours are? And also, I have made my seizures my 'friend' - that is, when I have a bad patch I know what to expect, how to look after myself and that, however horrific it is at the time, it will pass. After a bad patch I've found I'm more creative as if that part of my brain has been ignited. Does anyone else get that?