hello everyone, just joined the group, i was diagnosed with an avm in nv after goin for an mri, i have had an angio and went for the results yesterday. My neurosurgeon has said that any treatment could cause loss of sight in my 1eye. i was just wondering whther anyone knows of any other form of angio that can tell whether having any treatment would actually make me loose my sight. as u can imagine its horrile to have.
Hi Natalie,
I don’t know that another angiogram is going to give you different results. If your AVM happens to be in a location near the optic nerves, then there is certainly a chance that you could lose some of your vision. My AVM was in my left temporal lobe, which is not really responsible for vision, but the AVM did land directly between where the two optic nerves cross on the left side of my brain. As a result, I ended up losing exactly half of my vision, but it is not one eye on/one eye off… It is exactly half of each eye without vision. It is very unfortunate to have happen, but if it’s a choice between life and a partial loss of vision, I didn’t really see any other options.
The angiogram that you had probably served as a pretty good indicator of what areas are currently damaged and what surrounding areas could be damaged during a craniotomy, gamma knife or whichever option the surgeon may suggest. is the surgeon trying to suggest that you have treatment, or tryng to have you shy away from it unless absolutely necessary?
Whatever the case, I wish you the best. You have found an excellent site with a lot of people that are happy to listen and offer any questions that you may have.
Hi Natalie,
After I sent my message to you yesterday, I thought about several people I know that have essentially no vision in one of their eyes. They are able to work, drive, and one of my daughter’s friends who had vision in only one eye was active in sports. I also know how it feels not to have vision in one of my eyes because before my AVM was removed from my neck, it would take me at least an hour before I could open my left eye. I learned to compensate for the temporary loos of vision each day.
Whatever you decide to do about the AVM is a hard decision, but I wanted to let you know that if you decided to treat the AVM and ended up losing vision in one eye, you can still function.
Take care,
Debbie
hi jake my neurosurgeon is leaving me to make the decision all he said was that he is concerned about me loosing the sight
Jake M said:
Hi Natalie,
I don’t know that another angiogram is going to give you different results. If your AVM happens to be in a location near the optic nerves, then there is certainly a chance that you could lose some of your vision. My AVM was in my left temporal lobe, which is not really responsible for vision, but the AVM did land directly between where the two optic nerves cross on the left side of my brain. As a result, I ended up losing exactly half of my vision, but it is not one eye on/one eye off… It is exactly half of each eye without vision. It is very unfortunate to have happen, but if it’s a choice between life and a partial loss of vision, I didn’t really see any other options.
The angiogram that you had probably served as a pretty good indicator of what areas are currently damaged and what surrounding areas could be damaged during a craniotomy, gamma knife or whichever option the surgeon may suggest. is the surgeon trying to suggest that you have treatment, or tryng to have you shy away from it unless absolutely necessary?
Whatever the case, I wish you the best. You have found an excellent site with a lot of people that are happy to listen and offer any questions that you may have.
Natalie, my daughter had an AVM rupture in her right occipital lobe and she has some vision loss because of it. Her eyes are actually fine, but her brain was damaged so it doesn’t process information on the left side. It’s a subtle difference. She sees from both eyes, but her brain doesn’t process information on the left. So if her right eye is closed she only has a very small field of vision. With both eyes she sees 120 degrees. Every case is different, but I felt that the potential loss of my daughter’s vision was something we could manage. After nearly losing her when she had the bleed I felt the risk of leaving the AVM was way too high. I don’t think you’ll find a doctor that will guarentee an outcome.
I think vision is very sensitive to anything being messed with involved in the process of seeing.
Chari had an aneurysm removed in the front left of her brain. The surgeon told us that even though he would NOT touch or even come near the optic nerve, many times just being in the area was enough to cause some MOSTLY TEMPORARY vision issues. But there was a small chance of permanent damage to vision. His best guess was she might have some double vision for a “while”.
Obviously the risk of an aneurysm rupture trumpted any potential vision issues, so she did the surgery. I was with her in the ICU when she came to. The DR told me he’d fixed the aneurysm, so that would not be an issue.
She woke up, opened her eyes and focused on me (GREAT). Then she blinked and when she opened her eyes again, one was focused on me and one was 45 degrees to the left. Very Weird!
She did have double vision which drove her nuts. Her double vision was one image above the other, so she could never tell which image to believe! The low tech solution was to wear an eye patch over alternating eyes each day, to keep both eyes functioning.
Chari was losing hope about day 30, but she woke up one morning and the double vision was mostly gone. Quickly, it left and she was fine.
Hope your issue turns out as well as ours.
Ron, KS
The angio is a diagnostic tool, like an MRI so having another one won’t change it. HOWEVER, I would definitely get another opinion. Doctors see things different ways and have varying skills. I would send your records(radiologist report, the DVD of the MRI and the angiogram results)to doctors around the country. I know when I sent my daughter’s records to Pittsburgh, they whole neuro team discussed it at their weekly meeting. It will at the very least give you comfort in the decision you make. What caused you to have the MRI? Are you having vision problems now?
i suffer with migraines and no matter what tablets i took they were not working s thats when i demanded to see a neulogist t see if they could do anythink for me an he sent me for an mri and thats when i found out
Sandie Alger(Kasey’s mom) said:
The angio is a diagnostic tool, like an MRI so having another one won’t change it. HOWEVER, I would definitely get another opinion. Doctors see things different ways and have varying skills. I would send your records(radiologist report, the DVD of the MRI and the angiogram results)to doctors around the country. I know when I sent my daughter’s records to Pittsburgh, they whole neuro team discussed it at their weekly meeting. It will at the very least give you comfort in the decision you make. What caused you to have the MRI? Are you having vision problems now?