Has anyone ever seen a neuro-opthamologist?

We have an appt on Monday to see a neuro-opthamologist for Jaclyn. I hear it will be a long day. Just curious what others had experienced? This is the direction Jaclyn’s neurosurgeon is taking since she had a MRI/MRA/MRV done last week. She shows swelling again and continues to have visual issues. Please give me some insight as to what we might expect? Thx!

Kim: Not sure aoub that but I know my eye dr. (being in the occipital region) had to do some specialized testing but had advanced equipment…visual fields etc. I will do some checking with a friend of mine who works for a neuro and get back to you. Mare

Thanks guys! She’s never had any issues post Gamma for 5 years. After her 2nd Gamma and then a 3rd LINAC…that’s when the seizures, and eye issues started. I am hopeful this appt will find some answers and hope to have an easy resolution to her vision issues. Thank you for your replies!

I have nothing but good things to say about my neuro-opthamologist. My vision was 20-200 after the AVM, after surgery, it came down to 20-40, It’s even better now. My dr. is now retired which makes me very sad!

I take it your eyesite got better to? I wear glasses now, but I see much better after my surgeries. I’ll talk to you about em, if you email me at ■■■■■■■■■■■■■■■■■■■■ talk later.

Thanks everyone for your replies. Her appointment went perfectly fine! She has 20/20 vision and everything in, behind, and around her eyes is healthy! YAY! The dr also agrees with the neurologist that the visual spots and streaks of light as most likely a part of a migraine. He said to give the migraine meds a fews weeks to kick in so we’ll see! Thx again!

Kasey is on Lamictal also and had tried the generic, lamotrigine, but now has Dr’s orders to stay on the brand name due to vision disturbances. We did not know it was the medicine until after seeing her eye doctor and finding nothing wrong(poor kid was shot in the eye with a paintball 1 yr prior to discovering her AVM. So she already had a dr.). Anyhow, the next time she had a Rx refill it had a sticker on it that I had never seen before saying “May cause blurred vision”. Ah ha! I asked the pharmacist why this label suddenly appeared and he said the bottle was really too small for them to put it on. Oh great! That side effect is listed for both brand & generic, but for some reason Kasey only experiences it with the generic.

After my 2nd embolization, I had stroke like symptom with double vision. The eye glass power (distance vision) in both eyes also increased from 0, 0.25 to 1.25, 3.25. Double vision is due to “3rd nerve palsy”.Over last 9 months, the eye glass power has gone back to normal. Double vision is temporarily corrected with prism lenses and seems to be improving very slowly on its own. I expect the double vision to return back to normal in next 12 months - It has been very slow but steady progress. My eye doctor thinks that the changes have been due to the reasons other than “recovery”. Also, he is doubtful if the double vision will be ever cured on its own and I would need eye muscle surgery for correcting double vision. But, my neurosurgeon says - No intervention at least for 2 years from embolization.

Hi Kim
The doctors sent us to a neuro-opthamologist 4 to 6 weeks after Trevor’s bleed. They explained that where his AVM bleed was that there was a good chance that his vision was affected. We were only there a couple hours. There was no pain and they sent Trevor off with some dark shades in which he thought he was pretty cool with! :slight_smile: They were able to diagnose and tell us there at the visit that Trevor did have some vision loss in his upper right field of vision (both eyes). The doctor told us that it was minimal enough that he won’t even notice and if he wanted to become a professional baseball player he could. He did explain that since his sight was affected that the potential for further damage was there either with another bleed or surgery. Trevor had one embolization last week (went well) and in June he will possible have another and will have his craniotomy. We just keep praying all will go smooth. That’s our experience…hope it’s helpful. Praying for you and all the folks on this site.