If I can, I would like to help others with my experiences. If anyone has any questions, I will try my best to answer.
I have had 3 embolizations for 2 different DAVF. Coils, and onyx were used.
I have a stent placed in my right dural transverse/sigmoid sinus veins.
I developed cerebral venous sinus thrombosis after one failed procedure.
I developed a pulmonary embolism after my most recent embolization.
I’ve survived all of these things without any brain, or lasting damage. I will say, choice of doctor makes a significant difference in your outcome and success.
I have experience with warfarin, plavix, eliquis, lovenox, and aspirin.
Let me know if anyone wants to know more about any of these things.
Hi @tacos4life - Do you still check this site for messages? If so I have some questions for you.
I am so happy to see that you are still viewing posts on here. I am on day 5 post op of my embolization. What was to be a small procedure with coils and Onyx, ended up being a 6 hour procedure with lots and lots of coils and several stents.
I have 4 pipeline stents to the left ICA and a stent I believe along the transverse/sigmoid sinus veins as well. Mine also was retrograde and stealing blood from my brain, as well as putting extensive pressure on the veins behind my eye.
The team said that I’m one strong woman for being able to go through what I did in the operating room. My surgeon was only 1 in maybe 2 people who could have performed what he did. I feel blessed that certain people come into your life for a reason and I was meant to see my surgeon for this davf.
Questions for you how long were you on Asprin and blood thinners? I’m on Asprin and Brilinta for 3-6 months.
Also, how long did you feel “out of it” after your surgery? I’m definitely not at a 10, but I’m also able to stay awake for the majority of the day. I take at least one nap a day, mostly just to get rest as they say rest helps heal. I do try and walk here and there during the day on my own. However I’m still unable to push myself off of anything as it puts too much pressure on my groin. I’m very very sore in that area (both the right and left arteries were used) and ended up having a hematoma in both legs…which was the worst pain!!
It’s amazing what we can go through like you said and still come out without any lasting damage. Our bodies are incredible and will do anything to keep us going.
Can I say that 5 or 6 days post a big op like that is very early!
Here is my story: My Update - Dural AVF Embolization - #22 by DickD . I would say that I felt rough for at least a week and got to a better position within three weeks but it is a long journey. If you click on the date that is top right of any post, it shows you exactly when it was posted, so in this thread I log how I felt at each stage and you could see how many weeks post op each was.
I would warn you that subsequent to my op, I didn’t feel properly “fixed” and I struggled to believe the doc that all was really done and ok and it took me a whole year to 18 months to feel largely “back to normal” so please be patient with yourself with how well you feel, please expect a few steps forwards and one back each month but so long as you make progress over the long term, I’d say you’ll be doing ok.
I hope sharing my timeline helps.
Very best wishes,