So after years of being misdiagnosed following a grand mal seizure with visual aura, which doctors told me was due to low potassium/lack of sleep/stress… I was diagnosed with an occipital AVM. I have vision loss bilateral but worse in my right eye, the bottom right corner of my vision is completely gone and my parents never believed me. My old neuro told me it was probably due to lack of oxygen during my seizure.
My current neurologist was reluctant to even do an MRI just treated me for migraines with meds without running any tests… I’m a nurse so I was able to fight for myself with much medical knowledge (thank god). I originally went to ER in March with worst migraine ever, they found something but wouldn’t tell me what. They kept asking if I ever had a traumatic brain injury, which I never have. Found the AVM through MRI/MRA, was sent to neurosurgeon. Ran Angio and it was confirmed, and confirmed it had bled already. Hemorrhagic AVM which my doctor is convinced it happened when I had my seizure, in 2014. It’s now 2018. My AVM was embolized in July with onyx, 90% successful. My options were GK which takes years to work and might not be effective (no thanks), resection with craniotomy (not if you have to shave my long hair), or just watch it. Since it’s bled already apparently my chances are higher of another one. So I chose the cure-all option of removing it by surgery.
Anyway. I have a craniotomy resection scheduled in two weeks and I’m currently freaking out. My anxiety is awful about this. I want to get second and third opinions but I feel like it’s too late. I have pre admission testing tomorrow.
Has anyone else had an occipital AVM?? I’m scared my vision is going to be worse??? Also originally my dr said it would be a “complicated resection” because it’s just off the midline of my brain, before the
Embolization, which was the original treatment option I chose due to it being less invasive. It was only 90% successful… but now he’s saying it’ll be an easy resection. Is that because it’s my only option??? I’m horrified to wake up blind or paralyzed or just never wake up. Hoping someone can give me insight.
My AVM ruptured along my right occipital /parietal area; I lost left peripheral vision in both eyes and I lost peripheral vision down but I can see straight ahead and to the right fine.
I understand your feelings, when I had my second craniotomy to resect the AVM there was a chance I could go blind but everything turned out alright.
I was scared but I also didn’t want to leave the AVM in my head with a chance of another rupture so I went ahead and had it resected even with the risks as the risk of another rupture worried me more.
there’s always risk with these kind of surgeries you just have to get informed take a deep breath and make the best decision for you.
I didn’t lose any more vision on my resection; I just have to deal with the partial blindness from the rupture.
I’ve only had an embolization but I would say that embolization is often used as a precursor to a craniotomy, so maybe the doc is more comfortable about it because you’ve already got 90% of it under control.
It is a really difficult thing to know what to do. I’m sure there’s no “right” or “wrong” answers here.
Wishing you all the best! Its great to have you find us!
I had an Occipital Avm in 2002. I was told there was nothing they could do for me because it was entangled and they could not get to it. I never had surgery I just get an Mri every 5yrs. If your Avm was Embolized why do you need another procedure? I would seek out the best of the best and have them look at your films. If they say your making the right decision then get it done.
I’m trying to get a second opinion before my surgery, last minute, fat chance of that. The embolization wasn’t completely successful and there’s still a chance of bleed. My doctor said I can just watch it or get it removed. Since it’s bled already I just want it gone. I didn’t want to wait too long just in case and I have been having focal seizures on top of it. I’m trying to get into a doctor’s office this week or next for another opinion.
My multiple avm’s were all intercranial. However, they must have been connected with the occipital lobe in some way because I lost my peripheral vision in both eyes with the latest hospital visit and now I cannot see at all out of my right eye. The doc says that is due to brain decay, but it would’ve been nice to know what to expect…all this to say “sit and wait” for me isn’t an option because I was sitting and waiting vfor my 3rd gamma knife treatment when it bled. Blessings as you decide what is best in your specific case.
I have one in my left frontal. My doctor told me that if he needed to do a resection now that it would much less complicated to remove it. But originally it was 5+cm in diameter so with embolization and radiation shrank it enough that there would be a better outcome if he had to.
Hi Kim91. I had an AVM located in my occipital lobe. I was experiencing what I later learned to be seizures in my right eye during which I would lose vision for about 4 minutes. I thought embolization was my first choice of treatment, but the neurosurgeon did not seem confident. I was seriously considering surgery, but decided I did not want a hole in my head. So I chose gamma knife. The good news is that the AVM was gone at the one year mark. My vision changed for the better. The bad news is that either the anti seizure meds (generic Dilantin) or the gamma knife left me with vertigo of central origin, and am now on disability. My symptoms are lack of balance and coordination, which are the primary side effects of Dilantin. I really don’t know what advice to give you. I can only share my experience. John
thank you everyone. I had the resection done 6 days ago, it was successful. I get my staples out in two days and angiogram in three days. So far, recovery is going well. Having a lot of sensory sensitivity especially with light and sharp/quick movements. I should be back to work in a week and a half if all continues to go well. Thanks for the advice!
Wow X 2! I agree with John: it does sound like you’re doing really well. Well done for daring to get fixed and well done for getting out the other side nicely!
This is amazing! And so reassuring to many on here anticipating having a craniotomy. Good to hear positive experiences to ensure that although we must be prepared for things going wrong that things can go really well too! So happy you got your cranio done and now look forward to life AVM free
I found using a comfy eye mask helped me shut all the light out when I needed a proper break from visual stimulation when resting - definently recommend it! I also would try to get things done after the daylight hours when leaving the house at first until bright light no longer bothered me.
Sending wishes for you to continue to have brilliant progress and recovery,
