Worried Mum - Optic Nerve Swelling

I am mum to a 13 yr old daughter who has previously had a AVM bleed in cerebellum (2011), successfully treated with Gamma Knife. Follow -up angiogram in March showed that AVM has been occluded. We have just come back from Emily's first ever eye-test, routine family appointment and Emily has bilateral swelling of her optic nerves. We were sent to the Eye Casualty dept at our local hospital, and the Dr there confirmed this. I have since learned that this indicates raised intercranial pressure and am understandable worried. The Dr at hospital has referred Emily for an MRI scan, which should be in the next 2 weeks, with a field of vision test a week on Monday.

Emily's neurosurgeon is based at another specialist hospital in Nottingham, but I do intend to phone them on Monday. We have not had any follow-up from the neuro since Emily's last scan in March.

Emily has no symptoms, such as headache, feeling sick, blurred vision which is why the Dr has not asked for an urgent scan. I did ask if he thought it was worth contacting our Nottingham Dr, but as Emily is not symptomatic, he didn't think this would be needed.

I am in a state of shock and worried but trying to keep positive for Emily, hence why I am pouring this out to you who understand. Could this be a normal finding after a previous bleed? Anyone with any experience of Papilledema (optic nerve swelling),would love to hear from you.


Hi there, I also had swelling of the optical nerve and this is what led to my avm being discovered after a routine eye test. They don’t know what caused the hypotension for me, if it was caused by avm or unrelated.
I was put on medication and had to have several lumbar punctures as my pressure was very high and wouldn’t go down. When it did though I came off the meds and I’ve no lasting affects.
The only symptom I had when I look back is I sometimes got a snap pain at the side of my eye.
I had to go for regular eye checks at the hospital for a long time and I still go now for eye tests more regularly than normal now.

If you need to ask me anything feel free! X

Hi Clare,

I had a craniotomy surgery to remove my AVM when I was 14. My AVM never bled, and it was convulsions that led to the discovery of the AVM. That was exactly 15 years ago (to the day!).

I had a complication during my surgery - a clot formed and blocked the artery feeding my right eye. So, now I am partially blind in my right eye.

I also saw an eye specialist afterwards, but there was nothing abnormal about my 'eyeball pressure'

Later, when I saw my ophthalmologist in ~2007 she said I had higher than usual pressure in my eyes and it was something she wanted to keep checking. But she didn't say I had to do anything or take any meds.

2 years ago, I went in for a checkup with my ophthalmologist and she said I also had slightly higher eye pressure, but again, I didn't have to do anything or take any medications for it. It was just one of those "let's keep our eyes on it" things. Last year, I got checked again, and my eye pressure was fine.

That has been my experience, I'm pretty concerned about the health of my vision (considering I only have one good eye left), but this eye pressure thing just seems to be an indicator that doctors watch (kinda like blood pressure for ppl with heart disease). I think everything will be fine - your daughter is still young and healing so she might just 'grow out of it', or if there's a reason to be worried, then I'm sure your doctors will tell you what it potentially means, and what you could do for your daughter to minimize the risks.

- Eric

Dear Clare:
My avm was discovered by a neuropthomologist who ordered an MRI when I was referred to him after waking up on a Saturday morning missing partial vision in my right eye. The vision resolved itself- they said it had nothing to do with the AVM but was do to sudden drop in blood pressure as a side effect of blood pressure medication I had been taking for several years (yes the loss of vision was due to optic nerve swelling) I had an embolization followed six months later by gamma knife, Last week I saw both the neuropthomologist and neurosurgeon who said vision is perfect and the fistula created by the AVM is still there but my risk of a bleed has been reduced to 3-5% I will have another MRI in six months to assess the fistula. I would follow up with the neurosurgeon and an MRI-they will give you more answers.

Hi Clare , I had an avm bleed 13 years ago when I was 25, it was located in the right front temporal lobe I too had papilledema due to it I lost my peripheral vision, I had taken diamox which was actually making it worse , I had numerous lumbar punctures it was not only due to the bleed but also due to hydrocephalus. I has a lumbar shunt put in a month before my craniotomy to help with circulate the fluid it ended up overworking and had to come out I was also seeing a neuro ophthalmologist. My papilledema went away after my craniotomy and I also got my peripheral vision back once the avm was surgically removed.

Thanks for your replies. Did any of you have symptoms such as headache, nausea, dizziness etc. That's the thing I dont get as Emily hasn't had any symptoms at all.

Clara-I had no symptoms at all-just the partial loss of vision which the doctor said had nothing to do with the avm which they said was an incidental finding.

Hi Claradee!
I sent a friend request, but this cannot wait, so I am responding via the discussion board. I only hope you get to view this soon. I, too, had swelling of the optic nerve root in my left eye after surgery. You can read about my AVM/AVF on my page. Here in the U.S. doctors routinely put brain surgery patients on anti-convulsants to prevent seizures, even those with no history of seizure activity. I suspect it is the same where you are.
I was put on Dilantin (phenytoin sodium) and turned back over to my personal physician for follow-up. I had Kaiser-Permanente insurance at the time and they were supposed to monitor my blood levels to make sure I did not get Dilantin-toxic. A few months after my surgery I started to have some visual disturbances. It seemed I was developing a new "blind" spot in my left eye. I was trundled off to an eye doctor for assessment. He diagnosed swelling of the optic nerve as my problem. His decision was to just watch it for a time. I believe this was a wrong decision. I continued to have issues with my vision, which I eventually attributed to Dilantin toxicity. I insisted that my doctor take me off Dilantin as the level in my blood had exceeded the safe limit, although I am not sure by how much. The swelling stopped increasing and the eye doctor eventually decided on laser surgery to fix my eye.

As I recall (remember, this is back in 1992... things are a bit fuzzy.) the swelling caused the seal around the optic nerve to rupture. This allowed one of the several layers of my retina, the choroid complex, to become invasive into another layer of my retina. The end result is that my retina began to detach. After the cause of the swelling was brought under control my eye doctor lasered the area just lateral to my optic nerve root in order to stop the aggressive choroid complex from extending any further and to re-attach the retinal layers. The end result for my vision is the loss of sight in an area just to the left of the center of vision in my left eye only. The blind spot is scar tissue from the laser. My right eye compensates very well and I can pass any standard eye test. A visual field test, however, will show the blind spot.

If I close my right eye and look at the extreme right side of this text box I cannot see any of the text in the center of the box. The loss is annoying, especially if it could have been prevented, but sometimes we have to make hard choices. I do not regret the ones I made concerning my AVM.

I strongly urge you to consider contacting your treating and eye doctors immediately and discuss the situation with them. Do not be put off by any unnecessary delay, you have a true medical emergency and your daughter's eyesight may be at risk. Tomorrow is soon enough, but do NOT wait for additional days or weeks to have the consult. TAKE THIS EMAIL WITH YOU. I delayed and believe I lost some eyesight because of the delay. I cannot say with certainty that Dilantin toxicity was the primary cause of my swelling, however there was a direct correlation between the elevated Dilantin level and the swelling in my eye. There was, again, a direct correlation between the cessation of the Dilantin treatment and the cessation of the increase in swelling.

As you have probably noted, some of the responders to your inquiry have noted they had swelling, but no symptoms and were told it was not related to the AVM. This is also in line with my suspicion regarding the medication. I, too, was assured the problem in my eye was unrelated to the AVM. However, that does not mean it was not related to the TREATMENT of the AVM.

I hope this helps.
Michael in SoCal

Thank you so much for your detailed reply. However Emily is not on any seizure meds. Never has been. Her bleed was in 2011 with gamma knife in 2012, and she has not suffered from seizures at all. But she had a possible seizure about a week ago. She slipped and fell banging her arm on a table. This was a shock and she was in pain but not seriously hurt. I was in the room and hugged her to reassure her at which point she fell to the floor and her legs started moving involuntarily but lasted less than a minute. She felt as though she fainted but I'm not so sure now especially with the recent eye test. I mentioned all this to the eye Dr but he didn't seem concerned which is why I'm phoning the Neuro centre today. We're in the uk btw so meds protocol could be different.

Hi. I also have an AVM of the Cerebellum and it has not been treated and is unruptured. It was 'discovered' when I was 14 and it caused Hydrocephalus (water on the brain). I had severe headaches and vomiting over 2 years before my GP sent me for a CT scan which showed this up. The symptoms were mild to start with but got increasingly worse. Before the CT my only clue as to the cause was when an optician said they could 'see something behind my eyes'. My AVM had interfered with the normal drainage routes for Cerebro Spinal Fluid and this is what caused the extra pressure. I was hospitalised and had a VP Shunt put in. This allowed the draining of the fluid and my symptoms disappeared - although they return when the Shunt gets blocked.