Eye doctor?

Has anyone else had to see a nuero-optimologist (sp) related to their AVM or seizure treatment?

Yes, I did Holly so that they could see how much of my vision was impacted with my bleed. After all was said and done, the tests confirmed that I lost ~20% of my peripheral vision in both eyes which is the one and only deficit I have as a result of my massive hemmorhage so I consider myself one very lucky gal :)! I now just have to look more carefully when driving :))!


Thanks Michele for the reply. Did they have to dilate your eye to find that out? I'm just curious...

My neurologist is insisting I see an eye doctor for the partial blindness I was having. They want to dilate my eyes. I can see just as I could before aside from the blindness and occasional shaky eyes (no better way to explain). I believe it's neurological not optical and don't want chemicals in my eyes! Yikes. So I guess I am trying to find out if seeing an eye doctor is in any way part of the norm for AVM in the brain treatment...

Hi Holly
My AVM came to light though an eye test, swelling behind the eye was showing though a photo behind my eye's, I was then sent to the Ophthalmic Service where they dilated my pupils with drops so they could look in detail behind my eye's. My vision was a bit blurred after when reading other than that it was fine.
I know quite a few people that have had these drops.
Hope it goes ok.

Thanks Daniella. I'm still undecided and uncooperative. I'm a doctor's worst nightmare.

Is your AVM behind your eyes?

Hi Holly,

Yes,they did have to dilate my pupils with drops. Like Daniella, my vision was a bit blurred after the test when reading but in a few hours, it was all back to normal. One thing that I have realized is that we have to have complete trust in our doctors thru the many, ongoing, variious tests we require as part of the monitoring mode until we are AVM-FREE :)! They are the experts in this field and we are the lucky ones who benefit from the miracle of medical advancements so that they can monitor and treat our AVMs. I realize how uneasy this can be for you yet please do have trust in your doctors and know they are doing what's best for you GF!!!


Thanks for the pep talk Michele! I guess I have to find someone I feel that with. :/

Hi Holly,
Yes I saw a nuero-optimologist (sp) after my surgery but I had double vision that needed to be addressed. He prescribed prisms that I still wear today. Kind of different from your situation I believe. And yes they dialated my eyes from what I remember. Hope this helps in some wayand hope you're feeling well. :)

Me too Holly!!!

No my AVM is left temporal but my AVM journey began with a routine eye test, i have Papilloedema (swelling behind eyes) that may be coursed by AVM.

Thanks Suzie. I guess hearing that others have had this done makes me feel a bit better about it. I have always had perfect vision and never have had my eyes dilated so as with anything new involving my body I am weary.

I hope you are well also! <3

Hi Holly...Yes, MGH made an appt. for me to see a neuro-optimologist about 2 months after I left rehab. They found that I had peripheral vision lost (same as Michele) on both eyes, more on the right eye tho. I decided that I wanted to see a epilepsyologist myself. At first I saw a regular neuro doc for my seizures, but I decided it would be best for me to see an epilepsyologist and I just love her!

Hi Holly! I work for eye surgeons in Philadelphia. Don't worry, the drops won't hurt you. They're used to get a better view of the back of your eye, the retina, where the blood vessels are. As the others have said, your near vision will be blurry for a few hours until the drops wear off. They will probably do a "visual field" test to check your peripheral vision also. One eye will be patched to check one at a time. You will be asked to place your chin on a chinrest and look into the center of a latge dome. Then you will be given a buzzer and asked to press it whenever you see a small flash of light anywhere within the dome. But, you have to keep looking straight ahead. It's pretty boring, actually, but really important. Good luck!

Thank you Kristen for the solid info! I like to know what I'm walking into and what they are putting in me! I feel better about it now. :)

Hello Holly,

At present I do not have an apptmt to a nero-optomlogist but I figure I will. Can't hurt. Nedd to get this 2xvision fixed.


Hi Holly. My neuro optimologist didnt do anything different then my regular eye doc. Getting your eyes dilated is standard practice for a yearly exam. The doc looks in the back of your eye after dialation and then does a glaucoma test to check for pressure. They numb your eye and then touch it with a little device that measures the pressure. I cant make myself do that test. Even though you dont feel it I cant hold still because of my anxiety disorder. Dont worry about the dilation part. It might make your eyes a little dry for the day but its no big deal.

I still do not like the idea. But at least knowing it seems to be standard I feel a little better. I wonder though why it wasn't ordered in the beginning, only after having increased syptoms?

Holly, I have to get my eyes dilated with drops every year for my diabetic retinopathy check. The drops do not hurt at all and I can drive 30 minutes after the retinopathy scan. My AVM is in my occipital lobe and I have just had my peripheral vision checked a fortnight ago and due for embolisation treatment in January. Don't panic and I hope all goes well. Take Care Susan

I saw a neuro-opthalmologist almost two years after my bleed. My vision was the main physical thing that was affected by the bleed. She basically said she couldn't help me and sent me on my way. I recently found a doctor who specializes in treating people with low vision as a result of brain injury. He's not a neuro doc. but what a genius! Love him! He was patient and kind and didn't treat me like I was a fool because I wanted some quality of life back (like the neuro doc. did). He did dilate my eyes. It's necessary! Trust me! It doesn't hurt and your vision goes back to normal after a few hours. He has prism glasses made me for me also. They were ready i 3 days and I could finally read again, after 2 years! So, I have a little bit of my quality of life back. You must find a doctor that you trust and then let them treat you.

Wow Trish, two years is a long time. Can't imagine life without my prisms... ok surgery is a start but I digress... Hope you're doing well. :)