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AVM Survivors Network

Driving Problems

Some of you guys already know me, but if not, I had an AVM deep inside my brain since I was born and it burst in 2016. But before my AVM burst, I was starting to drive and working up to get my license and a car. But after my AVM burst, it left me with double vision and not being able to see anything on my right side, and that’s never going to change (it’s technically called hemianopsia). I’m able to partially fix the double vision, but the hemianopsia is going to stay with me forever. I am really hoping to be able to drive at some point. Do you guys know anything about this or have experienced this and figured out a solution to this? If I’m not ever able to drive because of the BMV or whatever the obstacle may be, how can I get from place to place? I’ve heard of TARC. Uber is way too expensive… And I’m wanting to live a normal life, have a good job and have kids. But what if not being able to drive gets in the way of that? Will it affect my ability to get a job if I can’t drive (obviously it will). Can I never drive my children to their school in the future? It’s very scary and daunting thinking about it. If you guys have ANY insights, personal experience, or tips on the matter, I would love to hear about it. Right now I’m living in Indiana, and thankfully in Indiana you can drive even if you have hemianopsia, but in Louisville and a lot of other states, you can’t. That leave me with a lot of questions and worry…

Hope to hear some responses

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Hey there! I feel your pain because after 19 years post bleed, my right side vision went out. Researched and found it to be hemianopsia as well. Had my regular doc, neuroopthamologist, neurologist, an others test me and verify. Because of that, I am no longer able to drive as well. Thankfully we live about a mile from grocery store. I know a lot of cities offer free ride on mass transit with your id card. For me, I contacted the Virginia department for blind and visually impaired. (https://www.vdbvi.org/) Perhaps your city has something similar. Blessings as you continue.

Thank you for your insight!! That helps. But if you don’t mind me asking, do you have a job you have to go to? And if so, how do you get transportation? Do you use the transit mainly? How different is Virginia’s transportation methods than Indiana’s?

Not a problem! You’re welcome! I no longer am employed due to increased vision loss and cognitive difficulties from multiple AVM ruptures in the brain. I have a bus stop about a mile from our house. I do not use it because it is too complicated for me but it could be done with prior experience. As far as differences, I would check the India department of transportation at https://www.in.gov/indot/. Blessings as you continue!

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Thank you so much!! And same to you!

Hi it sounds like you have a lot of anxiety over future events that may or may not happen. I’ve been there, done that so many times, but it is like rocking back and forward on a rocking chair - you are expending a lot of energy but not going anywhere.

You said there are no issues with driving in Indiana where you currently live, so this is not currently an issue. You said are going to college to study music. Why would a driving licence affect your ability to qualify for a job in music related fields? I’m guessing you don’t want to be a trucker or an UBER driver.
You are young and you get to make choices for your life. You can choose what state to live in (you can research their driving restrictions before making this choice). If you want to live in a state that has restrictions, perhaps you could live in a city with a good transport/transit system. You may or may not be able to drive your future children to school. No doubt your spouse would be able to drive them if required. Perhaps you could send them to a nearby school and you walk them there (or cycle if you can). Your children will be environmentally friendly kids with a low carbon footprint. Maybe you will even be a music teacher in their school. My point is, you are going to have an awesome life and you will be resourceful and find ways to work around any permanent issues caused by your AVM.

The AVM has given you some things you cant control but there are still so many parts of your life that you can control. Focus on all the things that you still can do instead of all the things you cant.

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Sometimes I do stress over the future and the unknown, but there is no good in stressing or worrying over things you can’t control. So, thank you for that reminder that everything will work out in its own timing. I know God knows what my future holds so I will cling to Him and not worry :). Thank you again for your encouragement and help!

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I’m sure there are other issues, but is most states, you need vision in just one eye to drive. My skull was crushed and deformed at birth, so my right eye points down too much to fuse images (11 degrees). I haven’t had parallax depth perception ever, so my brain adjusted to block out the information from my right eye in most circumstances.

Then in 2018, I had a whiplash accident that caused dAVFs on my left side, and consequently my left (dominant side) lost part of the peripheral vision, so now I pretty much have to use my right eye. Often I trail run or climb mountains with just one eye open. I have to lean my head way back when I drive so my eyes will almost converge, and sometimes I drive with just one eye open. This is a bit scary on the freeways, but not that bad on most roads.

I certainly don’t want to minimize your condition; but maybe you can drive with one eye, perhaps wear a patch over the “bad” eye? It’s probably easier for me, because I was pretty much born with double vision, and didn’t realize what was wrong until I was about 25.

I drive in spite of double vision (I use an eyepatch) and loss of fine motor skills on left side. Cars are set up right side dominant. Before I had to rely on family/friends for transportation. It is limiting. I live in a suburban area. The traffic isn’t bad in the middle of the day when I’m on the roads. I also have a sweet 4 wheel battery scooter. Like a mini golf cart. If I never could operate a car again, I would move somewhere I could get around on that. There are all different places in this world. You might consider somewhere that provides the little bit of help you need. When I went to Las Vegas I realized I didn’t need taxis. I even went back/forth to airport.

I used a computer system from Germany. Called “Novavision. I did seven months therapy and it fixed my visual field. I have a Massachusetts Driving license to prove it.

Thank you so much for sharing your story! You’re an inspiration and even though you’ve gone through these difficulties you’ve found ways around them. Thank you for sharing and for the encouragement/help :slight_smile:

Interesting- thank you for the info!

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Yes I understand- it is very limiting. Thank you for your insight and help!

I was exactly where you are now. Repetitive exercise of the optic nerve CAN fix it. I’m proof.

What part of your brain was damaged and what deficits did it leave you with?

I too have Homonymous Hemianopsia and I cannot drive in Florida; the loss of independence has been difficult as there is limited public transportation where I live and Uber gets expensive if I need to go into town frequently.

That makes sense- what do you do to combat that?

I either have to rely on other people for transportation which I hate doing or I walk the two-and-a-half to three miles to the grocery store or doctor and then Uber back trying to cut the cost a little bit; though with my balance and coordination issues I look like a stumbling drunk going down the sidewalk sometimes… other than that I might have to move closer to town where there’s more public transportation in the future.
Unfortunately at this point my options are limited so it’s just trying to make the best of a bad situation.

Mike,

Have you ever considered a tricycle?

Richard

I have; just not completely sure my ego is ready for that yet… :slight_smile:

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