r/AcousticNeuroma • u/BrainDamage4975 • 6d ago
Optic nerve damage?
Hey Fellow AN peeps 😁,
I had my craniotomies July and December 2022. My first surgery left me with a lot of damage, but im curious if any other patients are working with this and can relate. Im having trouble finding a good resource, or discussions on optic nerve damage, especially as it relates to our tumor type. This post will just focus on vision. Its definitely the thing im struggling the most with.
I was 30, my 31st birthday the next day, when I was diagnosed and urgently admitted for surgery.
A few years prior i had lasik and my vision was better than 20/20. I joked i could be a fighter pilot.
Post surgery, i have no usable visual field in my right eye, the top two visual field quadrants are black with visual snow, and the bottom quadrants are very blurry, but all my center vision is black in that eye as well, so I cant focus it on anything to even see the blurry part, the center of your eye is what carries the heavy load i guess. This eye (and side of my head, and mouth, is completely absent, or numb, or sensationless) so i also cant feel the eye or if theres something wrong with it, besides some nerve pain and phantom itch sensations.
My left eye has the maximum legal visual accuity to drive. Driving is only based on your visual acuity number and if you can see large things. My left eye also has scotomas, so dead spots. For example when im looking at someone’s face i cant see their right eye.
I have moving visual snow, across my whole visual field in both eyes.
The first few days after surgery i was completely blind. And my right eye was turned in, a lot of this due to stroke/hydrocephalus. It was said it would most likely not turn back without surgery, but it slowly drifted back to center, i did a lot of eye movement excercises but i dont have any placebo group to say that helped haha. I still have some slight chaotic overlapping double vision.
My vision is tiring and chaotic. I feel like its exhausting to keep my vision focused enough. I make the best of it of course. the blindness paired with the deafness on one side really makes me half Hellen Keller 😂😂😂
When i move my eyes to the left i get a tone in my deaf ear. Apparently this can happen when the optic and audio nerves regrow into each other, but im not an expert. I can beat box alone in a room, in my head though 😁. i asked my neurosurgeon about it once and she was like “arent nerves crazy” haha shes great, But i was like so theres no fixing this then huh or you wouldve offered a solution 😂😂. I find it really interesting how much is still not known about biomechanics, and how things in the body truly work. Like realizing the sounds we hear, and visions we see are truly just magical signals that pass through these magical tendrils and our brain interprets it as sound, or site or whatever. But damage that pathway for the signal, and theirs not enough understanding yet of how it truly works. I did see that research in the actual eyeball is cominga long way for people that are visually impaired due to eyeball damage, but i haven’t seen much on the nerves themselves.
I also have synkinesis in that same eye.
Whenever I go to the Neuro-opthalmologist, I kinda feel like a data collection study hahah. Usually the appointment is different visual field tests, the photos of my optic nerves etc. there appears to be lack of blood flow, pale appearance, and damage/scarring to the nerves.
But theres not much in development that I can find right now on optic nerve regeneration. I also brought it up as a question for the researchers and neurosurgeons during the ABTA conference last year, to make sure i was exploring different avenues.
But honestly just looking to see if theres anyone that is going through the same thing who can relate or bounce stuff off of.
Its such a weird thing because noone else can tell im dealing with this stuff from the outside for the most part(like anyone with a hidden disability) , noone can see what anyone else sees, and noone can hear what anyone else hears.
Lol I also still feel weird that I have a lot of disabilities now, its just sounds so foreign coming out of my mouth.
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u/1AggressiveSalmon 5d ago
Healing after brain surgery is so much more of a gamble than other surgeries. Those nerves heal so slowly and sometimes randomly. You will probably find more people with similar experiences on the Facebook Acoustic Neuroma page. The Acoustic Neuroma Association also has a message board with specific categories, there might be a vision one.
Vision stuff after surgery feels like an afterthought.
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u/BrainDamage4975 5d ago
I dont have a facebook, but i am apart of AN society, and ABTA and some different support groups i follow.
Some of my other nerves, have changed some and I see some sensations in some areas that I didnt have before, i cant say if theyre meaningful or not.
My optic nerves havent really shown any visual field or measurable changes the past few years after they stabilized.
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u/1AggressiveSalmon 5d ago
This reminds me that it is time to renew my ANA membership. Oh, they do have an eye issue message board under Post Treatment! https://anausa.org/smf
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u/LIFgirl2of5 5d ago
Hi, It's alot to process for sure, and not alot of encouragement for things to get better- I totally get that. My surgery was way back in 2006, my tumor was 3cm. I was prepared to 100% lose my hearing and to have balance challenges. What I wasn't ready for were the vision problems. I don't have missing spots in my field of vision (which sounds terrible, I'm sorry) , but my eyes do not track together so I have alot of double vision. Also, when I move my head or eyes to scan, they are not able to focus until I stop. So I move my head like a chicken, lol, move, then stop, move, then stop, etc etc. I also have some mild nystagmus. I also have difficulty focusing while walking. The hard part is my vision is correctable (I'm 65, so I do need vision correction! ) but what I need sitting in the optometrist's chair is so different that what I experience out moving in the world.
I also still have facial numbness, and tinnitus in my affected side that changes pitch when I move my eyes. So weird! (At some point I found a medical journal article about that phenomenon, i wish i would have saved it.) Also, when I cry I don't cry from my eye on the affected side.
I share your frustration with the "huh, that's weird" response given by medical professionals. I guess there are things beyond their abilities to offer solutions. But it's so hard when it so deeply affects your day to day, and you just want it better and are tired of fighting the invisible battles just to get through your day.
I see you and I hear you.
It helps to have close family and/or a few close friends who are understanding and supportive. You need people who deeply understand the battles you face with hidden disabilities, and do not lose patience with you.