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AVM Survivors Network

dAVF.. this is my story

#1

Hello group. My name is Amanda, I am 35 and was diagnosed w/ a dAVF Sept '18. I was blessed to have symptoms present themselves and this was discovered without a bleed happening, or I wouldn’t be here today to share my story.
In the last week of August I felt like I had been hit by a Mack truck, complete and unexplained fatigue! Two days later my eyes started to feel “funny” like they were crossing or one was going lazy, but my vision was not impaired at this point. I decided to make an appointment with an ophthalmologist as I just had an underlying “hunch” that something was “off” After that appointment, I was referred for an MRI because of my right optic nerve being inflammed and my age, these are common early onset symptoms for MS. As I waited for insurance approval I began to prepare myself to accept the news of MS. Double Vision set in the day after my opt appt and continued to persist and happen more frequently, up to about once every 10mins. One week post appt I decided it was time to go to the ER and streamline the MRI process. After a full morning of waiting, the Dr. came in and informed me of the dAFV (it is located near my brain stem, causing it to malform, in turn causing the vision issues, the fistula lies all the way along the inner left lobe of my brain, it’s a biggin) and that I’d be flown to a bigger medical center that day! So once I was flown out, I had an embolization (onyx) the next morning, however, they said it would take up to 4 more embolization procedures to fix the “mess” I have going on. 3 weeks later (Oct 3rd '18) I traveled back down to the medical center for embo #2. I woke up in recovery only a few hours after going under and knew it was not successful, just by how short of time I had been under. :frowning: The first procedure had narrowed the path enough that the Neurosuregeon could no longer safely get to where he needed to go w/o causing a stroke. So plan B became Gamma Knife Radiosurgery. This happened the first week of Dec. 2018. With this they only treated half of the dAFv. Stating the half they left alone is structured as a proper vessel should be and so once the rest of the fistula scars up, what’s left should be strong enough to handle normal blood flow pressure and not create any more issues, as long as it doesn’t find a different way around. So here I am 3 and a half months post gamma. My double vision has subsided except for when I’m exhausted or if I lay on my left side it is constant. I have developed a strong photosensitivy and can no longer work full time under bright florescent lighting of an average office. I need a nap daily to feel my best! If I push myself too hard, and over do it I have headaches, fatigue, eye pain and ear pain. It’s hard being young and a mother of 2 to learn limitations, but I’m trying my best every day. I am also learning that others around me don’t and won’t understand b/c I look and seem “normal”, they can’t see the daily struggles b/c I’m not a complainer and don’t air all my grievances to the world. Anyways, I am so glad I found this group! I welcome all encouragements, “Me toos” and any questions anyone may have!!

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#2

Welcome Amanda, happy to have you here with all of us! You’ve had quite a go with the two embolizations and now gamma knife. But you are right that it was fortunate to be found other than via bleed. I had a bleed back in May 2016, and Gamma Knife in November 2016. The waiting is tough! I found it got easier as time went by and I tried to be “normal”, but was fortunate to have limited side effects.

People will never understand the “invisible” unless you have experienced it. I’m convinced of that. With the brain involved I never knew what fatigue was, I knew what tired was but couldn’t explain that feeling when the brain just needed a break. When I was first out of the hospital that took about 10 minutes of any interaction. I experienced some significant photosensitivity and had to wear sunglasses in the house but for me it subsided, that was post bleed not post gamma.

Stick to it, and I can see you’re not a complainer but if you ever need to, feel free to fire away here, we get it! All the best and strength on this journey. Take Care, John.

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#3

Hi Amanda:

Welcome to AVM-ers group. We are here to encourage you, support you, and share with you any and all info we have. I’m so glad you found us. My AVM in my Cerebellum, ruptured 4+ years ago. I was so scared. No body I knew had ever heard of an AVM. When I got strong enough, I got on the computer and thank God I found the AVM Survivor’s Network and then I knew that I was not alone. Few people understand what we go through. They always say to me … “but you look so good”. I say that’s because it’s in my Brain and you can’t see it! It sounds like your symptoms mirror what a lot of us have gone through. For me, things got better in time, but I still have some deficits that I deal with every day. But, I’m so blessed to still be here and so are you. Again, welcome to the AVM Survivor’s Network. “We get it … they don’t”. Wishing you all the Best.

Sharon D…

#4

hi Amanda, keep your spirits high! i also had davf and embolization. On stressful days I get headaches and it is difficult to get through the day and work - but have to stay positive and make the most out of each day. all the best and do reach out if you have any questions.

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#5

Hello @Red57x
Welcome to the group
I too have a DAVF- I was 43 when they found mine which is left side where my transverse sigmoid vein should be , it got damaged during a massive rare stroke I had six months prior.
Then about 3 months later I felt the vein collapse. Then started to hear whooshing… then I would pass out when I got up which they told mine was “ retrograde “ making the blood flow backwards.
So I had one embolism and was supposed to have a second but somehow it had sealed some on its own and the rest they can’t reach safely without paralysis, so we just keep a watch on it.

Do to the stroke I no longer can work I worked in trading and there is no way I can handle the noise or lights. I even have to leave some restaurants.

This is a great group.

I did go back to work for a bit and I totally know what you are talking about people don’t get it. We look ok and I even got you lost weight you look great…( I wasn’t overweight)
Yes thanks I was throwing up …but I look good so yippy.

Listen to your body. And don’t rush things.
You only have one brain and it likes to remember pain.

I go every 3 months for Botox shots in my head for pain.
I have tried every other kind of shot Stanford pain clinic has offered and nothing has helped.

Angela

#6

Yes the NOISE!!! There have been times that I thought maybe I was just being moody or crabby but I have been in situations lately where I just can’t “do” the loudness and will literally just plug my ears to help calm down a little bit, or we end up leaving the event early b/c I’ve just had enough. Also, I used to get head rushes all the time, almost anytime I’d go from sitting to standing, always thought I was probably low on iron or something but now I am convinced it was because of my davf, but when you don’t know it’s there, something as simple as head rushes can be brushed off pretty easily. Thanks for the welcoming support! This site really does help on those days I feel like I’m just crazy and alone in my own head. :wink:

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