My brother had an embolization and coiling of his occipital AVM on Jan 2nd and his vision got worse, he already had loss of vision in the periphal field of his left eye from the bleed that occurred in September, now he just had a craniotomy and resection of the AVM roughly 12 hrs ago and he states he can’t see at all. I know that because it was in the occipital lobe one of the main side affects is loss of vison but our neurosurgeon said that there was a chance his perfect vision would be restored after the surgery and no more damage would be done. Is there a chance his vision will be restored at least back to what it was before surgery?
Praying for your brother. I will be curious to see the responses you get. My daughter is having an embolization done on Wednesday. her avm is also in her occipical lobe. I will be hoping that after the innitial trauma to his bbrain that his vision will come back. Sending prayers!
My AVM was also in my right occipital lobe (your brother's would be also if he lost vision on the left). When I had my bleed one of the first things that happened was a loss of total vision. I wasn't conscious until many weeks later, after my craniotomy so I don't know what my vision was like before my surgery. I lost most of the vision on the left in both eyes. It's called homonymous hemianopia. It's been 3 1/2 years since my bleed. None of my vision returned unfortunately and it's likely it never will. But, it hasn't gotten worse. In your brother's case I think it's still too early to tell. Much of the recovery takes place early on, but it continues even years later so it's possible that he will regain some of his vision. My vision loss was the result of the bleed, not the surgeries so the damage had already been done by the time I had my crani. I would say stay optimistic but realistic. It's also possible that his vision may never return. That said I can tell you that we learn to adjust over time. There are exercises that can be done to increase the visual field and to help train his brain and eyes to scan to the left. Not to say that I still don't bump in to things, I do all the time, but it's funny to me now. Check out this website: www.hemianopia.org. It lists all the symptoms (it's not just the loss of vision, it encompasses so much more). Also, for me reading was impossible until I found a doctor that specializes in low vision treatment. He prescribed special glasses with prisms for reading have they have helped me so much. They are only used for reading not for wearing all the time, but being able to read was huge for me. So, if your brother's vision doesn't come back, it'll be alright. He, and your family will learn to adjust and help him. It still beats the alernative!! Best wishes to him and to you.
My experience: Before the AVM bleed I had what I described at 9 years old as "spots in my eyes". After the craniotomy, I was told some vision was probably lost, but that it would come back. It did not, and I learned to live with a left homonymous hemianopia. This was in 1959 with no visual therapy, no therapy at all. My vision did not come back, and never got worse. Wish I had a more positive story to tell you.
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Thank you for the prayers. My family and I greatly appreciate it. I can only reciprocate by praying and keeping your daughter in my thoughts as both of our families go through this difficult time. I will keep you updated on his process and please do the same for me.
Hi Calypso - My AVM was in the cerebellum, right below the occipital lobe. I initially lacked peripheral vision, but my one o.t. gave me some exercises to help it, and I got to be a guinea pig for their new vision board - also one of my p.t.s and my eye surgeon gave me some vision exercises to do. I had to have eye surgery on my left eye - but totally unrelated to peripheral - I somehow acquired a crossed-eye - just a little something extra.
In all seriousness though, I'm pretty sure the occipital lobe controls most of your vision - a doctor would know best. Although I know much more now post-AVM rupture - more than I ever wanted, too, really - about the brain, a trained professional would be more knowledgable on it.
I did a search for you on here…
http://www.avmsurvivors.org/main/search/search?q=Occipital
Every person heals differently. However, I believe as long as you are alive there is always hope for a full recovery. There have been so many advancements in medicine in the last 25 years.
I sincerely want to thank everyone for such a wonderful outpouring of advice. It as been a little over 24 hours since his surgery. We have not had a chance to fully test his vision because he’s very groggy and only wants to sleep. I know from all the advice that I have been given, to be hopeful and realistic about how much vision he may have lost. The neurosurgeon performing the craniotomy and resection actually had to removed part of brain matter because they found multiple developing AVM not seen on the angios and Embolization. It was completely unexpected and because of that his surgery lasted 12 hrs as opposed to the expected 8 hrs they anticipated. I was wondering if anyone can share their experience of caring for someone immediately after ( one week or less) their craniotomy. Just how many days after before they were discharged? When did they start eating and wanting to be awake? Just stuff like that.
Thanks again for all your comfort
Calypso
Hope things are still improving for your brother, the best medicine for him right now is having all of you there to be supportive, "Yea" to you! I was a little shocked and scared when I read that they had to remove some of his brain matter due to developing avms, that were not seen in the angio or embos. as my daughter has been told she is not a candidate for a craniotomy because her avm is to large and to deep. Kinda makes me wonder if there are more "monsters" growing in her head that we don't know about. Keep the faith and keep all of us in touch on his progress. Sending prayers and warm thoughts everyday!
Hi Calypso. Unfortunately, every recovery rate is different. Mainly because every person’s brain is different. Now just in case the surgeon did not mention it…the brain heals SLOWLY but it can heal! I know it is hard and it probably seems like an eternity already but please be patient with your brother. It is going to take time. Feel free to read my profile page. I am going to send you a friend request.
I understand you are anxious for your brother to be a little more alert. Like Barbara said, every person is differnt, every AVM is differnt, so everyone's recovery is a bit different. Your brother's brain has been through a lot. He likely will be very tired for quite some time. That's one of the common themes among us survivors. We all seem to suffer from fatigue, either mild or extreme, we all seem to be chronically tired. I'm not a good one to answer your questions about how long before he eats and is discharged. My situation was very different. And I've got a part of my brain missing now too! I actually had no idea until I saw a follow up MRI a few months ago. I can still function pretty well so don't be overly concerned about that. I wish your brother a speedy recovery. Let us know how he's doing.
Hi Calypso.
My son just had his AVM removed last month, he lost part of his vision (we were told ahead of time that he would)His was in the parietal lobe . He was in the ICU for 7 days after his surgery, and it was also a 12 hour surgery. His vision improved slightly after a few days. He runs into things, as he cannot see anything on his left until it is right in front of him. He will adjust to it, it will just take some time. I truly hope your brother's vision improves! He will be tired for quite some time, my son is over a month pre op and he still gets tired very easily. It just takes time. He started eating about 2 days after his surgery. The first day they brought food in, but he didnt hardly eat anything. He was just so tired. I know you are very anxious right now, and I was the same way, you just dont know what to expect. Just keep strong for him, and know that there are others going through this with you and will be here to answer any questions you have. I havent been a member very long, but many people here have given me some great advice and helped lift my spirits!
I had a left occipital lobe avm.. Im sorry for your brother.. I hope his vision does return, mine hasnt, but I didnt lose all.. 75% Good luck!!