I was jw if anyone on here has nystagmus (involentry eye movement)
And if so do you drive? I had a avm rupture and now along with alot of other disabilitys have nystagmus and would like to know how driving with it is?, i know with nystagmus you can drive,
I used to b4 and would love to get back to it?
I also wanted to know if anyone with this has trouble seeing/judging steps?
I was jw if anyone on here has nystagmus (involentry eye movement)
I have nystagmus since my AVM ruptured and I drive. How long ago was the bleed? Mine was 13 years ago. I feel like it improved a lot during that first year.
My daughter, (18 years old) has nystagmus, and has an AVM on her brainstem. It was party the nystagmus that helped to find the AVM. She is a figure skater, and after she would spin and stop her eyes would rapidly go back and forth and she just saw everything spinning. She thought that it was normal, and that's what being dizzy was. She thought that it happened to every skater. My husband and I didn't know it was happening until her coach told us that she "Looked like a cartoon" after she spun. Her AVM did not rupture. She had Gamma Knife in October of 2013. Since then the AVM has shrunk to about 1/3 of its original size. Yay! But the nystagmus has not lessened at all. She has never stopped driving but it never affected anything but her skating. This probably didn't help you much but I at least wanted to give you a reply and say that I'll keep you in my prayers and hope that your symptoms will go away completely very soon. <3
I had "eye exercise" therapy with the neuro-opthalmologist once a week until I could re-focus and hence, able to drive. it was years after my avm rupture. (there were other problems besides vision.) if you haven't, already, seek the advice of a NEURO-OPTHALMOLOGIST.GOOD LUCK
Thank you very much!! Best of luck to you too!
My rupture/ surgery for my AVM on my brainstem was 14 years ago. I still have nystagmus and drive. I has gotten a lot better but has required a lot of work. It continues to improve with time. However I still have a tough time at the DMV when it comes to the vision test. Although I always seem to pass it" it takes longer for me to focus on the chart.
For the longest time after I had surgery I thought handrails were the best thing since sliced bread. If there is a difference in floor color( the carpet changes patterns, or there is a transition from wood to tile (or something) ) I can not tell if it is a step down. I have become very good at testing the ground with my foot before taking a step if there is a question.
Walking on a wooden deck with steps is very hard for me to see the depth of the step or even if there is one. Again I will test the surface with my foot.
My family had to get used to me doing this. For maybe the first three years out of surgery I followed people around — I mean I would make them walk in front of me so that I could adjust my steps by watching them. I eventually learned how to navigate my surroundings that were familiar . When it came to new places I would not go alone or made sure that there was a way out —just my anxiety I guess.
I am a lot better now. Look up NORA (Neuro Optometric Rehab Association) on the internet . Awesome insight into the visual system and steps that can be taken to improve an area of the visual system.
Wow Kellie. I'm sorry that your symptoms were so challenging, but I'm very glad that it has gotten better and that you were able to manage. I think we all learn to compensate, and find what works for us. The main thing is to not give up! Best of luck to you! Keeping you in my prayers.
Thankyou every1 i will try everything possible x
Hi! I will check into NORA as I have had many major bleeds from what was always an inoperable AVM. I have walked as you do since 1973. I developed a hematoma on my brainstem from the AVM that leaked. All these years later, technology was to the point that I had no choice BUT surgery. At UCLA the team removed the brainstem blood clot AND evacuated the remaining AVM, despite two Proton Beam treatments, it remained. Three years post op this is a new normal. I cannot drive as I have a homonymous hemionpsia. I have all your issues and more! I hate it and doing the smallest task is difficult, although no one could ever tell. That makes it even harder. The anxiety is so great and panic attacks are frequent. Wondering how you dealt with that. Glad you are much better!
Anything remaining on her brainstem though is always a concern. I am so happy for the shrinkage. I had Proton Beam radiation twice, but it only shrunk the AVM 7% . 38 years later, the remaining AVM leaked and created a hematoma on my brainstem. It had to be evacuated. Now, in a major, major, surgery, the AVM was resected. Harder to heal the older you are. My first bleed was just before my 15th birthday and all the rest in my twenties. I say, listen to your doctor, but belive me, she is so luck to not have had a brainstem burst. The brainstem is nothing to fool around with. My recovery from the craniotomy has been brutal. Good luck to you guys!
I, too have nystagmus after my craniotomy. I also have double-vision, and my tracking and scanning abilities are crap now. I see an optometrist who specializes in double-vision, and I attend vision therapy in an attempt to lessen it. Sadly, there is little to be done to correct it. My only suggestions would be taking baclophen, which is a muscle relaxant, and can lessen it. However, it does cause drowsiness. Also, hard contact lenses my be an option, if you wear lenses.
As for driving, I do drive, but I don't like it. I only drive when I must. At night, and in the rain is the worst. I am very cautious at all times. My depth perception has been affected, but the vision therapy has helped.
Thankyou i loved driving before and just wanna get my confidence back,
I know what u mean about the night and rain , id try to aboid that wen i can,
Thankyou all for your comments x
Sorry julie didnt see your comment
Mine was nearly 3 years ago x
Hi there. I have nystagmus in both my eyes and it is one reason I was sent for my first CT scan. Opticians also pick up on this whenever I have an eye test. I have been driving for 22 years and have only lost my license briefly after having operations to revise my VP Shunt. I have an AVM of the Cerebellum which is unruptured.
I have homonymous hemianopia to the left (blind) and nystagmus. I had surgery to make the muscles in my left eye work better.I have no eye convergence, or no binocular vision. Steps are very bad.There are other conditions like diplopia, and I can't remember the rest. All I know is it makes it difficult.