Hey all…it’s been sometime since I’ve joined, but this is my first post. I was diagnosed with a dAVF in 2018 (transverse/sigmoid sinus, left side) and had my first “embolization” a few weeks later. The surgeon used particles, and was unsuccessful in closing it. However, he said I was at no risk of strokes or bleeds. Flash forward to the great year that is 2020. In September I went to the ER with an odd lightheaded/dizzy feeling, like my head was floating off of my body. CT showed a small clot in the jugular. MRI showed no bleed, and I also had a diagnostic angiogram. It showed great blood flow to and from the brain, so the surgeon scheduled a surgery to close the fistula in the next few weeks. Five days later I was back with the same feelings, CT showed a cerebellum stroke. I passed all stroke tests, and the dizziness was my only symptom. I ended up getting my fistula repaired the next day. Surgeon used a coil. He was going to put another in, but the fistula already started to close. He kept my original surgery date, which was Oct 6 to take another look and do some touch ups if needed. The fistula was still closed and blood flow was slowing down and normalizing. The next week I went back with that dizziness, CT and MRI were good, no new stroke and fistula still closed. I will have another angio in six months. I’ve had tremendous anxiety since all of this. I tried buspirone for a month, taken off, then I took one dose of Lexapro. I thought I was dying after just one pill. I know healing takes time, but the anxiety is terrible. When you’re told there’s “no danger” more than once, your mind gets the better of you. I have to physical deficits from the stroke, but mentally it’s been difficult. I’ve started therapy, which I was in the process of after losing my mom in 2018 and my dad in July.
Thank you all for letting me share my story, and any support/sharing of stories is welcomed and appreciated!
Well, thank you for the post - I am always seeking more information on this topic(well now, since it includes me)
Severe anxiety & AVM’s seem to go hand in hand quite a bit. I actually mentioned this on another topic that someone posted - I had to be on meds for a bit post my embolization procedure - my neurosurgeon put me on Valium. I’m no fan of this stuff at all, but it was a must - my thoughts would run away so hard, that my BP would spike & stayed very high
Now(about four months after my embolization), I am “okay” most of the time - I’m on medicinal weed(also not a huge fan, but it helps) - or, on some occasions I still have to reach for the Valium or Alprozolam - it’s tough at times, that’s for sure - I’m not used to being medicated on anything
Off topic a tad, but I noticed that you are an RN? How have you been for the last two years? I’m really trying to find out how this will go for me in the long run - And, I’m considering a career change - into the medical field actually, which is a huge change which I don’t know if I can manage
Back on topic
I hope u feel better 
Thanks for the response! I signed up for this forum two years ago, but I never saw much posting for dAVFs, only regular AVMs. I got a summary email yesterday, and your post was on there, causing me to log on. I had a bruit(the whooshing) for almost two years before the diagnosis. It started as very mild, but increased as time went on. The first surgeon was from a hospital where I was working, and he took a modest approach since it was then benign. When he told me the particles were unsuccessful, the next step would be Onyx or a craniotomy! He also told me to not make any quick decisions about a redo, which is understandable. An MRI/MRA a year later (at my asking) showed no change. Now here we are! I now work at one of the biggest hospitals in Nashville and was considering seeing someone else, but thought I’d wait, I’d already been living with the noise for this long. On 9/10 I got this very odd dizzy/lightheaded/panic feeling. It was like my head was filled with helium. I went to the ER, and a clot in the jugular bulb was found. I then had an MRI and then an angiogram. I was told I had great blood flow to and from the brain and that the fistula caused the clot. But it had now changed to a Congard IIa+IIb, meaning I now had cortical drainage. We don’t know if it changed due to being on blood thinners for an unrelated clot, from all of the stress I’ve been under (loss of both parents, massive tornado missed me by 9 apartments), or what. Miraculously, my INR was dropping, meaning the Coumadin wasn’t doing its job, which was a good thing in this case. I had a venous infarct, so the blood was backing up instead of going down. So here I am with 2 rare things: a dAVF and the venous /cerebellum infarct which make up like 2% of all strokes.
Ativan helps, and I don’t mind those. It was buspirone that kept me up at night (and sweating) and as the dose went up, the worse my anxiety. So I was taken off and did one dose of Lexapro. I didn’t read about any side effects prior, I was actually looking forward to it since I have a friend who said her life has been so much better with it. I had each side effect listed when I looked it up the next day. I’m not opposed to medicine, but that was awful. I didn’t feel I could “adjust” to those side effects (dizziness, lightheadedness, headaches, increased anxiety) while also trying to recover from a stroke! I’m really hoping therapy does work. I’m easing back into my workouts, and sometimes feel the pulses in the back of my head, which is weird. I’ve read on here that it may happen for a while as the blood is still regulating.
As far as being an RN through this, it was hard being on the other side of things. I love being a nurse, and I keep telling myself that maybe I’ll be of comfort to a future patient who might be going through the same thing. I’m only 5 weeks out, and I know it’s going to be a journey. It doesn’t help that the things that bring me joy (concerts, travel) aren’t happening now, not that I’d be doing much of those at this time. If you’re looking to go in the medical field, having your experience will definitely make you more compassionate, and the patients really find comfort in that. It’s never too late to make a career change, I didn’t start nursing school until I was 35 and I’m now 44. Go for it!
Well, thank you for the long & descriptive reply
I hope you do Very well - I’m amazed how well I have done so far throughout all of this, considering
It’s difficult at times - but, I’m not stopping(changing, that’s for sure). That’s awesome to hear that my post brought you back on here - it’s definitely been an experience, to put it lightly
So far, so good - until it feels like my brain starts melting. Lol
It definitely changed my mind on a lot of things after going through this & still am. I’m not a guy who’s used to taking it easy - and, I am trying my best 24x7 to try to adapt.
Back off topic - I’m just hoping to have it in me to make such a change. I just turned 40 & this year I feel like I aged a decade. But, I feel so so lucky to be able to even be able to do anything - seriously. . . Learning how to walk again after deadlifting 500 pounds a month prior, is a huge change.
But, even after reading your last post - it’s seems very true, we’re all still here for a real reason - even if it shows no logic when it happens
It was a long reply 
. It was kind of therapeutic to type it, and also there’s just not a lot of resources or information out there regarding this.
I get what you mean about feeling lucky to be here. I’m grateful.
Having the “want” to make a career change is the first step, the rest will fall into place.
@TracyB I had a nurse tell me once that nurses and drs make the worse patients because you all know too much. Now I feel between myself CVST STROKE- coma then DAVF , my little sister ( necrotizing fasciitis, 9 MRSA hospitalizations and ovarian cancer) and my mom Tarlov cyst spinal surgery I too know too much.
I too had part of my DAVF close on its on the second time I went in for embolism and now we are just watching it cause the location could Cause paralysis and since I recovered from my being paralyzed on my left side from CVST stroke they don’t want to risk it.
I can’t believe you went two years before they found yours.
I am sorry to hear about the loss of your parents.
I am treated at Stanford by the head and founder of neuro radiology Dr Michael Marks and Dr Neil Schwartz head off Stroke.
They all tell me any changes to let them know and then they run their scans.
I had my first embolism with glue and onyx in Jan 2012 and then we went back in 2015 but nothing was done.
So far so good.
The only time I had an issue 2018 was when I had an allergic reaction to scalenes shot of liodocaine and ropivacaine. All that happened was it throbbed a lot and my bp dropped low 70/30 and I just felt off and so I took a bunch of benedryl but later my drs Scolded me that I should I’ve gone to ER but I knew the student drs had just started…
Thank you for being a nurse love you guys!
Angela
Tracey,
Hi! I know you’ve been busy reading my story because you’ve 
ed most of it! So, I’m not sure I’ve got much left to tell you.
Other than the posts you’ve already read, I do think it could be the short sinus that leads from the cerebellum that brings some of the dizziness and weird feelings, and in this regard I feel a tiny bit similar to you.
The one area I think I want to encourage you in (even though I think you’ve read this in my posts a few times) is that even after the embolisation, I still felt quite weird in the head for a long time, so some of what you may feel may be to do with getting used to the new flows. But it’s impossible to know whether it’s normal or needs attention. Well done you for persisting and getting the right care!
How are you doing?
It’s good to share with you. Best wishes,
Richard
Richard,
Thank you for your reply. Yes, I did read a lot of your stories. It’s just so helpful to hear from others with this. My first “embo” was without very little after effects, just random pains in the back of the head that was probably just from vessel irritation from the procedure. But also, that procedure didn’t work and I was told that right after. I hate that I had to have an “event” to actually get it repaired correctly. This surgeon used a coil, was going to put in one or two more, but the fistula already started closing and he couldn’t advance the catheter back in. That awful bruit is gone, but I still hear a dull noise of turning my head a certain way. It’s better than it was, that’s for sure. I hoping that will even go away, but who knows. I go back in six months for another angiogram. Praying it will still be unchanged. Like you said, it’s difficult to know what is adjusting or symptoms of something else, and that’s so frustrating/scary. I’m almost six weeks out.
I’m so glad that I have reconnected with this forum. I know everyone’s story and recovery is different, but it helps to be able to share with others who even KNOW what a dAVF is! Last night I read through a lot of posts, and I’m so happy that I’m getting responses from others.
I’m doing the best that I know how these days, but I know I just have to adapt and get myself stronger. I’ve had so much stress from other life changes in the last few months that makes this even more challenging. I keep thinking that God brought me to my current job (RN at Vanderbilt) so I could find this surgeon.
I hope you are also doing well! Thank you for communicating and I also wish you the best.
Tracy
Angela,
Oh my! What a time you’ve had, too. Thank you for reaching out, it’s been very helpful to me the last few days to be in touch with others that can relate. I appreciate each and every one of you who is replying.
I hope you are doing better these days. I’m almost six weeks out from my stroke/embo and to say the has been challenging is an understatement. I hope that we all continue to stay in touch.
Thank you for your kind words!
Tracy
I’m doing fine. It took me 1.5-2 years to get back to ok but today I’m 100%.
You’re very early on. Just be ridiculously patient with yourself, ok? You’ll need it. Check up at 6 months sounds like a great idea.
Hi Tracy
I’m sorry to hear what you’re going through.
I’m actually stumped at how to reply as I’m in a similar but opposite position as I was on meds but withdrew… Now think I need them again after surgery.
What I mean is I’ve always struggled with massive anxiety in life. And have been on some meds for it. Mostly they didn’t help. Some made me worse (as you mentioned). And I was wrongly diagnosed with mental issues which were caused by my davf I’m certain as those issues cleared up after surgery…
So I weaned off all my medicine and got back to normal when they found the davf and I had surgery
I weaned off my valium (which was the only thing that helped my anxiety ever) which I can say is a life saver (if used correctly). Now I was fine but after surgery and a few struggles post surgery, I’m doing well emotionally overall but I am very anxious about my avm to the point I want to reach for valium again.
I guess what I’m trying to say is I think the anxiety is normal for lots. I realise that itself doesn’t help you but it’s normal to feel anxious in your situation. I certainly do
I know from experience that some meds like ssris can help anxiety sometimes too but also have some side effects and you need to be on them for a period to see if they work and there are so many to try to hope to get the one that helps. Mental stuff is so difficult sadly. But some friends have wanted to give up after trying so many meds then they finally find the “right” one that works for them
I had a bad medical scare with brain the other week that I haven’t posted here yet but now I’m often sitting here squinting my eyes waiting for a pop in my head. Which causes anxiety and a loss of enjoyment in life
Is your anxiety in spurts/random periods or constant?
@AlwaysCurious, I didn’t really have much anxiety before, only in certain circumstances like flying. I’ve had some over the last two years with the loss of my mother, and then all the events of the last several months. Ativan helps, and I only take it as prescribed. I do know with the antidepressants it’s trial and error, but I just can’t imagine trying to adjust to something that makes me feel worse. My anxiety has pretty much been constant since September.
So much has happened recently that I constantly feel on edge and that something else will happen. I know healing takes time, but it’s hard to know when I’m just adapting to the changes or if something needs to be looked at.
TracyB! All our stories are unique. You can read mine if you’re bored. But what worked for me was the stubborn unwavering belief that I will get past all the s*** and come out on the other side with little to no deficits. I’ll get back into shape to compete in the Ironman I had qualified for, and finish college (it took another three years). That was 27 years ago. The doctors, nurses, technicians were amazing and highly skilled then. They’re even better now. The technologies surgical techniques, and thanks to modern pharmacology and research, the drugs are amazing.
Get into your mind what I typed above. There’s no other option but getting better and putting this in your rearview. Be stubborn and don’t drive yourself, and your family, crazy by overloading your mind with all the differing opinions of the so called experts online.
There was no online…anything back then for me to use. I was on my own. Didn’t tell my family until it was absolutely unavoidable. Turns out brain surgery is difficult to conceal. And I’m very clever. Don’t do this on you own. You have your family and friends wherever you are. AND you have all of us who were/are where you are right now. Reach out.
You’ll be fine. There’s absolutely no other option. GOT IT!!
Thank you for the encouragement @Bill4. Our stories are all very unique indeed. I’m thankful for this community. I did read your story…wow! I’m so happy that you are doing well!
Thanks! I’m a Realtor here in Phoenix, AZ. If I’m riding around with clients I don’t share my accident history with them.
You’re going to be ok, TracyB. Tattoo that on your brain. It’s one thing to be informed and cautious. it’s quite another to fixate on what might go wrong. No negative thoughts. Going by your photo, you appear to be about the same age as when I had my AVM circus. Remember how lucky you are to be in the country best equipped to deal with this. You’ll be fine. There’s no other outcome.
Sending you peace, love, and light.
Bill
Tracey,
Bill told me the exact same thing four years ago. It was the best encouragement. I keep him as one of my saviours!
It just takes time.
Lots of love,
Richard
We’ll all be “ok”
But, being “ok” is a matter of opinion - best way I can look at it & put it to myself is “you better be ok” with a different ok now
Or - you’ll just stress yourself out, depending on how bad you get
@TracyB Hello Tracy I just wanted to say many times anxiety is dysautonomia. I have Ehlers Danlos and I have a form of Dysautonomia and my younger sister has a serious type of POTs . She was misdiagnosed when she was younger with anxiety,
It can feel flight or fight response. Stanford has an entire Dept dedicated to it and sadly not many drs know about it and some even don’t believe in it.
We both have been put on midodrine and she is on many more meds.
We both have to stay hydrated and drink electrolytes. I bring Nunn ones with me and have Ultima powder for at home.
I switched to Celtic sea salt and so have my mom and sister.
Not sure if this will help you , but thought I would mention it
When I quit my job I really had a hard time at first because I loved what I did- but I knew it was best for me and now I am volunteer for our counties aging committee and help other nonprofits when I can.
Hugs
Angela
I have a friend with dysautonomia. She takes atenolol. The link you sent was very interesting. I do find myself sitting in the floor in the knee to chest position often (have always done this), I just thought it was comfortable. Who knows? I just know that I really didn’t have much out of the ordinary anxiety until all of the events from the last few months.
@TracyB many times I have heard this Tracy that some event usually a stressful one can trigger something and then drs label it “ aniexty”
But then when you look back at the history there is more there.
My gf Crystal who grew up with my step brothers who I weirdly met on a support site and helped her get diagnosed with Ehlers Danlos Pots, and mast cell activation…
She was told she just had Fibro and anxiety and never was going to the drs - she was frustrated. She was telling me that she did that too against the wall with knees to her chest. She was always passing out.
You can also do your feet up on the walls while in bed to get the blood flow up to your heart . My sister does that one.
There are 4 tests they do at Stanford . I is the tilt table test, 2 are breathing tests and the other is sweating test. I guess I don’t sweat as I should. So I have some form of dysautonomia, just not pots . I always handled stressed well and worked in trading .multi tasking.
Even when I was young at 16 I was a supervisor at a children’s clothing store at sun valley mall in a Concord Ca at a small plane hit the mall and caught it on fire and there was an assistant manager Working. She couldn’t make a decision to close the store, I took over made the decision to close the store and one of the other older gentleman wanted to leave out the back door and I stopped him and made him feel it and it was of course hot because there was a fire back there.I took over made the decision to close the store and one of the other older gentleman wanted to leave out the back door and I stopped him and made him feel it and it was of course hot because there was a fire back there. We were able to safely able to evacuate everybody out.
I also evacuated people from another store during the SF earthquake in 89 when I was an assistant manager in college.
Hopefully you can find a dysautonomia dr near you.