I saw my neurosurgeon on Wednesday for the first time. He is very patient and I really liked his honesty. He said my right occipital lobe AVM is at most 3.5cm in diameter, and is accessible on the surface of the brain. He says there is a 98% chance of a successful removal of the AVM. However, there is also 50% chance of left Homonymous hemianopia. I’m very torn at this stage, I am not sure I am ready for the consequences of the operation, as I rely heavily on my vision for work.
I had the exact same thing on the other side. I lost some peripheral vision on the right side. Other than that my vision is still perfect. I honestly barely notice the peripheral vision loss. It’s certain better than worrying about a bleed.
Kate I have left homonymous hemianopia after my bleed and craniotomy. It is challenging, no doubt, but certainly better than the alternative. I’ve learned to compensate fairly well. Not to say I don’t still bump in to things but not as often. I have a pair of prism glasses which have allowed me to read again but I can’t wear them for anything other than reading as they make me dizzy. Losing vision is not the worst thing that can happen. You will learn to adjust, I promise!
Homonymous hemianopias can be hard to understand, so just in case you are not entirely clear about it, let me say something about it. (By the way, I am a cognitive neuroscientist who does research on visual deficits resulting from brain damage.)
A complete left homonymous hemianopia would mean that you were unable to see anything to the left of where your eyes were focused. For example, if you were looking directly at the face of a person standing in front of you, focusing on her nose, you would be unable to see the right side of her face (the side on your left). This is not the same as being blind in your left eye, which does not reduce your visual field as much, and it is not the same as losing your peripheral vision on the left.
This is a significant loss of vision, and takes some getting used to. That having been said, people with hemianopias usually adjust quite well. You mention that vision is important in your work, so I don't know whether a hemianopia is something you could work around.
I know this is a very hard decision for you. Let me know if I can give you any more information, or do anything else to help.
Hi Brendan. I’m so glad that you have been able to keep most of your vision, that’s fantastic! I wish someone could tell me that only my peripheral vision would be affected. I know that’s not possible, but if only…
Thanks Trish. Yes I am starting to come to terms with it. It’s pretty scary though. But it is comforting to know that one can adjust to it. How do you go about seeing/reading on the computer?
Hi Mike, thank you so much for your explanation. It confirms what I thought it was, and what I have been trying to explain to my friends and family.
You talk about “complete homonymous hemianopia”, is there such a thing as “partial homonymous hemianopia”?
I am an audiologist, so I need to look into people’s ears, manipulate hearing aids (can be quite fiddly), use the computer a lot for testing and writing reports.
I know deep in my heart that I want to go through the surgery, as Brendan and Trish mentioned, things could be worse and better than thinking about a bleed constantly. I’m apprehensive of the unknown though
Yes, loss of vision on one side can be partial or complete. The term hemianopia means loss of vision in half of the visual field, but this term is sometimes used even when part of the half-field is spared. (Other terms you may come across are quadrantanopia, which means loss of vision in one quarter of the visual field (such as the upper left quadrant) and scotoma, which is a more general term for a blind area in the visual field.)
How much of a visual half-field is affected depends on how much, and what specific parts, of the occipital lobe are damaged. Because your AVM is on the surface, the risk of vision loss probably is from damage to the primary visual cortex, an important visual area on the surface of the occipital lobe. If the entire primary visual area is damaged, vision is lost in the entire half-field, but if only part of the area is damaged, only part of the half-field will be blind.
You might want to ask your neurosurgeon whether the visual loss, if any, might be partial and if so, which parts of the visual field might be spared.
I don't see any reason why you couldn't keep working as an audiologist even if you had a complete hemianopia. A heminaopia doesn't mean that you are always just seeing half of everything you look at. One way people with hemianopias adjust is by looking not directly at something but rather slightly to the side. For example, instead of looking at the middle of someone's face, a person with a left hemianopia might look toward the left edge of the face, so that the whole face is within the "good" right side of the visual field.
I'm guessing that you may have contact through your work with occupational therapists. You might think about talking to an OT who works with people adjusting to hemianopias or similar losses of vision. He or she could probably give you a pretty clear picture of what it would be like, and how you could adjust.
Sorry to go on so long. Keep us posted on what is happening with you. I'll be thinking about you.
Thank you Mike. Your information is so helpful, and extremely valuable to me. Thanks for your support and care. And don’t apologise for long posts!
Your reply has given me a new perspective and I have a better understanding now. I’ll definitely bring these up with the neurosurgeon when I see him again for my follow up appointment in 4 weeks’ time. I’ll keep you posted!
Kate you might want to ask your neurologist if he can recommend a neuroopthalmologist for you. They can perform tests to determine exactly how much of your vision has been lost. This was particularly helpful for me as I didn't even realize my vision was affected in my left eye. Also, seek out a low vision specialist. These can be optometrists or opthalmologists. They can help you with prism glasses, if those are appropriate for you, as well as other tools and techniques that can help you adjust. Please feel free to ask any other questions you might have.
Thanks Trish. I have had a visual field test from my optometrist, but he too, thinks that it is a good idea to see a neuro ophthalmologist. I’m in the process of making enquiries to find one. Thanks heaps for your advice.
Is your vision affected only in the left eye?
No it's both eyes. I mispoke earlier. I meant I didn't realize my vision was gone (to the left) in my right eye until after my appointment. I guess because to the left of my right eye is just my nose but to the left of my left is basically everything on my left. Usually hemianopia affects both eyes. And you're more than welcome. Let us know how you get along.
Kate. Ihad a one cm AVM in my right occipital lobe which bled when I was 9 years old, many years ago. I think that sometimes smaller AVMs tend to bleed. There were spots of vision missing in my eyes before the craniotomy. I must have had little bleeds before the big bleed and seizure. I was in a coma for a number of days, and then a lot of tests were done because they had no idea what was going on. This was 1959. Tests were barbaric and pInful, and they learned nothing. They did use the EEG results to pinpoint the “area of irritation” and did exploratory brain surgery based on that. The doctor found and removed the AVM. He thought at the time this was cancer, and I believe as a precaution, more brain was removed than would ever have been today. But I lived,I have two sons, and had a wonderful husband. I worked as a paralegal for a long time at a State Attorney General’s office, and I have a total left homonymous hemianopia. I do think it is easier for kids to become accustomed to the loss of vision than an older person would be. That being said, you may end up with a hemianopia, but today they know about this condition. No one knew for many years what an AVM or hemianopia was. I never had visual rehab. No one ever told schools about what I had. I did not know for years this loss of vision was in both eyes. I finally went to a neuro opthamologist who did not even know about hemianopia. I finally went to a neuro optometrist who knew so much about my loss. He tried to get my eyes to converge through rehab, but it did not happen, so we worked with what I had, and I learned to scan the world when I could remember to do that. I am not saying it has not been difficult at times, but it certainly is not the worst thing to lose. You learn to live with it, and I was very grateful the part of vision left was so clear. Most of my life it has been 20 20 vision to the right. It is now, as I get older, that the good vision is not as good as it was. I have cataracts now, too. But, all in all, I have done well with the vision loss. Good luck, and will be looking here to see how you are doing.
Beans, that makes me so relieved and pleased. Thank you for sharing your story. This means so much to me, especially today! I had a second seizure on Sunday night and have just come home from a short stay in hospital. I have been thinking about the surgery every since and I believe that I am ready now. And I will be ready to adjust and tackle the hemianopia.
I am seeing a neuro ophthalmologist next week, I’m hoping to learn more again about the assistance and rehab available where I live and then I’ll be looking forward to going in for surgery, hopefully sooner rather than later! Your story is amazing, it gives me hope and something to look forward to. Many many thanks
Sorry for the late reply, I can echo Trish's comments. My AVM was on the left and was 8cm. I have 50% visual field loss. The initial loss was after the bleed and although it improved slightly after the first craniotomy, after the second the original visual field loss returned and remained. My AVM was discovered after a bleed, so my treatment was urgent and left me with little time to think or choose. My wife was instrumental in the decision to operate, so if you have someone who you can share this with in that way, let them help.
I know how scary the prospects are. Everyone in this group has been there so we can all relate. Read some of our stories and take the positives from them. I relied heavily on my vision for work as well, and unfortunately, due to the damage to both the occipital and parietal lobes, I have had to retire. Bear in mind that my AVM was 8cm in size and was on the opposite side to yours. Trish can still read, as can Beans and there but no one can tell precisely what your outcome can be. Use our experience as a guide only, not as a something set in stone. Hang in there, stay strong and if you need help there are plenty here who can provide support.
Even with the visual field loss and associated brain processing issues brought on by the removal of the AVM, I would rather be here than face the possible alternative. Life does go on and it is really what you make of it given your own challenges.
I just checked your updates and see that you are due for surgery in June. Good luck and keep us posted.
Zak, thank you for your response.
Your positivity and your outlook on life is an inspiration.
You are right, this community has done so much for me, I am really grateful to have found it and to be part of this great big family. It is people like you and many of the others who encourage and support others that make me feel welcome. I do have a wonderful partner and family who are with me.
I am coming to terms with all the possible consequences and I’m taking it as it comes. I was expecting surgery in June, but I think it is unlikely now as I haven’t heard from the hospital yet. I’m still on the waiting list for the moment.
Thank you again for your support. It means a lot. I just read your story, what a journey you’ve had! But I’m glad you are AVM free now, and have been given the all clear!