Has anyone had treatment for a DAVF that did not go well / was complications?
@wales Hello Well my first treatment during the angio part it was way more complex than they thought- I am a super tough woman but I am super afraid of spider and snakes and the image looked like a spider with 30 legs was in my brain…so the doctors were so excited and discussing among themselves I was having a s#$T fit inside and asked WHAT IS THAT and had to ask again and raised my voiced which raised my bp which is a big NO NO - so they did a main line IV to my heart which hurt a lot I think I would rather have my foot run over by a car…so I told them they better knock me out before I hit one of them. ( I dont know why but when I am in pain I like to punch people)
so they did knock me out- the drs expected to do the angio and embolism in 4-5 hrs but it took 7.5 - when I woke up only the fellow dr was there and I was in so much pain I felt like I was being electrocuted in my left temple and I could not talk so I was using sign language with my right hand cause I had another stroke - anyway it was terrible. Luckily the next day I could speak and my neuro who is the head of stroke came to check on me and I told him what had happen and the fellow is no longer working at Stanford and probably no longer in the US. They were unable to get all of it at that time- They thought they were going to have to a craintomy but when I went back a few years later some of the veins had sealed themselves and the rest they cant reach safely so they are just keeping an eye on them Angela
That all sounds horrendous! Are you ok now? No significant lasting physical impairment? This is what I’m worried about. I read a story of a lady who came out of the procedure in such a bad way she literally could not walk or talk. It was years later and she was the same. She communicates in other ways. It is a dangerous operation isn’t it?
@wales Well My story pre AVM I had a rare Massive stroke called Cerebral Venous Sinus Thrombosis- 5 blood clots in my brain for at least 3 months. Drs dont know how I was going to work every day and I only told one person 2 days prior I did not feel good - I really should of died from that stroke but I did not- I had brain damage and had to relearn everything on my way recovering I noticed I was started to pass out and was hearing a whooshing which was getting louder and was not able to sleep…so I mentioned this my stroke dr who is the head of stroke at Stanford and his eyes got big and said you cant have another rare brain thing…I said oh you are just getting to know me…( my family has lots of rare things so used to this crap shoot)
So from that stroke my brain was pretty beat up it impacted my thalmus, my basil ganglia and limpic system. I was in trading and was dealing with loads of money and had to think quickly and loads of stress. This derailed me big time. The DAVF was growing and getting louder I could not sleep at all and was distracting even during the day so we opted to have the angio and embolism at the same time
I also have a connective tissue Ehlers Danlos - which also put me at risk during the procedure which can tear my arteries and veins. So looking back we should of just done the angio and then done the embolism another day. I just think it was too soon from my massive stroke and my brain needed more time to heal. It is also a risk to have a stroke during the procedure - That is why you want an older person who has had loads of experience and flat out ask them how many people have died? How many people have had a stroke? I was his first? and really it was his fellows fault not his. I do have occipital pain that I did not have before but I get botox shots that help and in the big picture I would rather have that then live with the whooshing and the growing DAVF - its personal- - I first had my mine worked on in Jan of 2012 and then again in May of 2015 and some how my body had sealed more off by itself which is not normal -
I had my first embolization for DAVF in Nov 2017 which went perfectly. It solved my pulsatile tinnitus, back of head pressure, and neck pain (cerebellum/temporal area AVM). Second embolization Jan 2018 caused left eye blindness (ophthalmic artery occlusion) due to complication during the procedure where “regurge” which was traveling toward my brain had to be “shut down” preventing something catastrophic…but I now am challenged with monocular vision at age 56. Possible radiosurgery still recommended but unsure I wish to pursue anything else – trying to remain positive but despair comes in waves
I am so sorry to hear this. Thank you for telling me, Is there any hope of your eye sight returning to how it was or is this permanent? Is that what the radiosurgery is meant to be for? If the first embolisation went well, what was the second one for? Is the Davf still there? I haven’t had treatment for mine but it’s making me feel so constantly ill…are you in the UK?>
Two neuro ophthalmologist consults – optic nerve and retina damage so vision loss is permanent. The second embolization was necessary since the first targeted the two primary feeders off my carotid artery. It was too dangerous to do more and had to be in two steps. The neurosurgeon states he reduced the DAVF flow, etc. 85% post 2nd embolization which is great but the complication occurred causing sight loss. Yes my DAVF remains and that is what the radiosurgery consult is for.
I live in San Diego, CA.
I’m really sorry to hear it’s permanent and I don’t blame you for being apprehensive about any further procedures now. You have been through a lot. This whole DAVF situation is horrendous. I keep hoping it’s a terrible nightmere and that it will go away. If only… I wish you all the very best