Looking for Positive Recovery Stories

Hi everyone,

I’m 29 years old, and last November I was diagnosed with a dAVF on the left side. My main symptom was pulsatile tinnitus.

I had two embolizations about six weeks apart, with my last one in January. I then had a follow-up angiogram in June, and thankfully, everything looked fine.

However, I still get headaches from time to time. I also sometimes experience sudden blurred vision or a blurry aura in my eyes that comes and goes.

Even though my follow-up was good, mentally I’m still struggling with everything I’ve been through. Sometimes I feel like I’ll never feel completely normal again. I find myself worrying about my future and whether I’ll live a long, healthy life. These fears have even made me scared to think about having children.

Has anyone here gone through something similar and come out the other side feeling normal and enjoying life again? How did you learn to trust your body and stop feeling different after everything you went through?

I would really love to hear some positive stories and experiences. I think I really need that right now.

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@Elika

Welcome! There are a bunch of us here who know exactly how you feel! @Sophia has had an embolization a couple of weeks ago and is trying to come to terms with how life looks just now but I promise you you’re just on the journey to getting better: it takes much longer than any of us would believe.

I was in much the same position as you in spring 2017. I had an embolization for a DAVF at the beginning of April. The doc suggested he might take two attempts at it to get it 100% but then reported back after no 1 that he’d already done it 100%. I struggled to believe him.

I had a repeat angiogram at about 8 weeks post op and again he declared that all looked good. I half believed him but I half didn’t. I went back to normal life but in reality I felt less well than I expected.

The blurs in your vision might be scotomas. These are usually effects of migraine. In my case, I got a small frosted-glass teardrop shape that would randomly appear just off centre of my vision in both eyes. It would grow into a large C shape, with “teeth” in the C. It would carry on growing to cover my vision for a few minutes before resolving. Overall, a scotoma typically resolves in something like 10-20 minutes. Does this sound like what you’re experiencing?

Between me and a doctor, we decided that it was irritation of my brain caused by the contrast material. I had bouts of it over several weeks after both the embolization and the repeat angiogram. The bouts got less frequent until presumably the contrast material had cleared out fully. You might have it from any kind of irritation or scarring or changes in your brain. Aura are not in themselves anything to worry about. Your operation was to address your stoke risk, not deal with migraine at all.

I found post op that I had all sorts of weird sensations that worried me. Principally, I used to be dizzy from my DAVF and post op, I still got smaller dizzinesses and weirdnesses that I felt I was not progressing. About 6 months post op I had a more serious bout of dizziness and felt that perhaps things were not going the right way. It took me a further year to get back to hospital, to have a consult, further scans and then have them reported on and still the answer was “There’s nothing physiologically amiss: I can’t see anything on the scans.” My doc suggested I just needed to continue to get used to having the right pressures in the right places after having odd pressures in a number of places driven by the DAVF.

I resolved to believe him and to ignore any small things that were still happening from time to time. I decided that I was probably being a bit hypervigilant: I think it’s a natural thing to get a bit hypervigilant with something like this: and that actually I needed to look forwards rather than back.

It took me 1½-2 years post op to get back into that mindset but I feel it worked. I ignored the little stuff, I stopped listening for odd sounds and I moved on. I’m still here, actually perfectly relaxed about my DAVF, 9½ years post op. The last 7+ years have been great: I have resumed normal life.

It’s great that you found us. Hopefully others will also share their experience and encourage you that you’re doing well.

Very best wishes,

Richard

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Hello!

I had a craniotomy rather than an embolization so a different recovery path but my surgeon shared an important thought with me recently that I thought I’d share with you. The brain takes a good year to two years to heal from damage. Patience with yourself and the process is important. It’s not perfectly linear, but should present a gradual process of improvement over the months.

Also, I most certainly experienced some serious trauma leading up to all of this from the sudden diagnosis to shifting to a reality that says I can drop dead if I strain too hard while I wait for surgery. There was also the dawning realization that for the last 50 years, all the weird quirks about me were really my brain starving, not just random. That’s a significant emotional roller coaster. What helps is therapy and time, and I encourage both of those things in the aftermath of this crazy birth defect.

Good luck,

Anne

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Hello,

Welcome :smiling_face:

As Richard says, I am very new to this community and incredibly thankful I found it.

I’m 2 weeks post embolisation today! For a grade 3 DAVF. And my life felt like it was tipped upside down in the space of a week, and I’m still struggling everyday with processing what happened and thinking about what’s next/my future.

You sounds very similar to me in the sense of the main struggle seems to be the mental battle. And it’s really really tough and scary, and I think it’s really important to talk about that and let it out. I’m currently in therapy which is very helpful, is that something you could look into? This community is also very helpful when it comes to understanding and listening to each other, as I’ve said in my previous posts, I don’t always feel understood by the people around me which can be difficult.

As I say, I’m very early into this very unexpected journey, but even in the last 2 weeks, the biggest change that has helped is my mindset. I very nearly got lost into a void of self pity and depression and I didn’t want to go that way. I’m similar age, I’m 31 and I have a 4 year old daughter, so I can’t let myself be swallowed up by the what ifs and the fear, so I have to consciously make a choice every day to work through those thoughts, acknowledged them, and move on. Move forward.

Again, this community has been an absolute life line for me. Just hearing everyone’s experiences and stories has been incredibly helpful and I think realising that you’re not alone is important.

My reply has been a bit rambled sorry! But if there’s anything you want to ask/talk about we’re happy to help :smiling_face:

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Hi Elika!

I must say that it is hard to feel normal again. I am close to your age and have been dealing with my brain AVM since 2006. A lot of times I wonder what my life would have looked like if not for the AVM bleeds. Something that helps me is looking at life goals. As a young person looking ahead at where I would be in 2026, I wanted to be married by now, to travel to multiple countries, and to be a published author. Surviving two bleeds has made those goals harder, but I have achieved all of them. (If interested, my novel “Coincident” is available on Amazon :wink:) Despite the bleeds, I am still where I want to be. The path was harder than I had foreseen, and I am still scared about having kids one day, but I hope I can overcome that fear too.

All the best!

-Julia T.

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Hello Elika!

I’m 33 and got to know about my AVM when I was 19, too deep into my brain (close to the motorics and sensation area) for embolizations/brain surgery so I did proton radiation therapy in 2017 (at 24). It takes 3 years to see the outcome after that kind of proton radiation therapy so I had to live with the fear of it rupturing during all these years.

I was depressed to the degree I had to change my whole life around, moved abroad and travelled a lot and I’m so thankful for that in all of this. When I was 30 I got declared healed and everything has slowly crawled up on me again. Since I now live in Sweden again, the winters are long and dark which is hard for me. But what has helped me the most is actually pretty simple. I do yoga and work out at least 30 minutes 3-4 times a week (I can’t run properly since the radiation therapy made me loose connection with my foot) that raises my pulse. I feel much better doing that! Also, to have trips planned and enjoy time with my family and friends!

Also, a positive mindset! I can truly recommend the book “You are the placebo” and “Becoming supernatural” by Joe Dispenza, as well as “The Power of Now” by Eckhart Tolle. As you said, everything looked fine. (Almost ) everyone gets headaches from time to time, don’t let that stop you from enjoying your life!

Best of wishes to you :slight_smile:

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