Hi I’ve not visited here for a few years now. Nothing has altered and as a result if the gamma knife procedure I suffered sight problems. I will not be safe to drive again because of it. I was wondering if anyone else on here has experienced this problem.
Hello @Doonie! It’s great to hear from you, though disappointing that you should be describing sight problems.
I’m interested in whether the scotomas appear and resolve within a short time or whether they last a long time. I briefly suffered from homonymous scintillating scotomas after my embolization procedure and again after the repeat angiogram but they appear to have been provoked by the contrast material and were thankfully only an issue for a few weeks post op. Each occurrence was kind of bottom right of my central vision, typically resolved in 10-20 minutes for me and happened just a few times a day.
I know that @Leja has just joined us as a new member and has described having trouble with her vision as an indicator of her AVM but I haven’t had the time yet to ask if hers were perhaps negative scotomas or some other diagnosis yet.
Welcome back!
Richard
Hello again. Nice to join you guys again. I also had embollisation on two separate 7 hours operations under general which I always seem to forget about. This was followed in 2015 with the gamma knife op. Approximately 5 months after my sight deteriorated with what felt like the aura that I used to get with migraines but it never rectified itself. After consulting my doctor and several tests it was discovered that I had developed heminopia with was quite bad. I remember there were students observing my field test result being told by the person in charge that it was one of the worse cases she’s ever seen. Wasn’t that nice to hear! It is so difficult to explain to people what it is. So many people say oh I suffer with that too! So I clam up. After 11 years of this it still doesn’t get any easier to live with. I find sub titles on tv a nightmare! I miss be able to drive and I don’t go to many places now. Sorry for morning! There are people on here so much worse than me.
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No! My ENT doctor, who was the first person to give me an AVM diagnosis, his first words of conclusion were, “Mr D., You’re my last patient of the day but my most interesting patient of the day.”
I said straight back, “I’m not sure I want to be your most interesting patient of the day!”
“You’ve got what we call an arteriovenous malformation,” he said, and his mobile phone rang. He had rung a colleague a few minutes before talking to me and not got through. It was late in the day and his colleague was already away from the hospital. They would miss out on meeting this unusual patient and the two doctors would meet up next Tuesday, perhaps for a game of golf.
No, where medicine is concerned, being much more usual is the better position to be in.
How constant is your sight loss or does it come in episodes?
So true. Makes you feel a tad doomed! I’d enjoy being special but not under these circumstances! My sight deficit is permanent. It never comes back. I get hallucinations when I close my eyes trying to sleep. It’s like having a kaleidoscope behind my eyes. Scary sometimes. I was told by my consultant that it is permanent. I’ve got it for the rest of my life.