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Swollen Optic Nerves

My 5 year old daughter went in for a routine Kindergarten eye exam.  The eye doctor found that she had swollen optic nerves in both eyes.  She then saw an ophthamologist who also said she has significant disc edema.  She has no other apparent symptoms and her vision is good in both eyes.  He looked at both my eyes and my husband's eyes to see if there was a familial explanation for drusen - but we were both good.  He said it could be papilledema and the only way to tell is to do a scan.  I felt like he kind of left it up to me to decide if we wanted to do that or not.   In this case, what are the chances that this is completely harmless?  I am leaning towards doing the scan because I feel that we don't want to miss something significant at this stage.  Are there reasons that we should not do the scan?

He also noted mild ptosis and broad epicanthal folds - would that have anything to do with the rest of this at all - or is it just a side note?
11 Responses
530357 tn?1227793881
Just out of curiosity has she ever complained of headaches?

I would most definitely do the scan. I have a medical condition, in which disc edema is a hallmark sign and once it progresses enough leads to loss of vision. (Pseudotumor Cerebri if you are interested, although it is very uncommon in children)

The scan can't hurt, and it might make you feel better knowing for sure.

I don't think the mild ptosis and broad epican. folds has anything to do with the optic disc edema.

Best Wishes.
Avatar universal
She never has complained of headaches.  She also told us "no" to having double vision and tinitus, though the doctor wasn't confident that she really understood the questions.  I have read about the condition you have as well as many other related ones, but never saw anything about how common these things are in children.  I will most likely be doing the scan after talking to our family doctor.  I have read that if the scan is fine, then they may move on to lumbar puncture.  I want the scan to turn out good, but don't know about moving on to a lumbar puncture.  This is all so much - she "seemed" fine until the kindergarten eye exam!!

Avatar universal

How are you?
Swelling of the optic nerve or papilledema occurs due to increased pressure inside the skull. This increased pressure can be due to hydrocephalus, tumors or bleeding.
Sometimes the optic nerves appear swollen when they are actually not. This is called as pseudo-papilledema and is very common in children. It occurs due to buried calcifications in the optic nerves.
Such calcifications will show up in a scan. A scan will also be helpful to rule out the other causes of papilledema. So please go ahead and get it done. Do keep us posted!

Avatar universal
What kind of scan are you refering to?  An MRI?  My son was diagnosed with swelling of the optic nerve last year when he was 2.  We had an MRI that was normal and an LP that was also normal.  We don't know where to turn next.  He hasn't had any vision problems that we have noticed or that have been noted by his opthamologist.
Avatar universal
My daughter has just gone through the MRI for the same thing. The Doctors told us the optic nerves looked swollen and irregular in shape. The MRI came back good but the pediatric opthamologist recommended we take her to a neuro opthamologist and let him decide about the lp. He took a look at our Daughter and said that the lp was not needed and that this is just the way she is. A neuro opthamologist specializes in the optic nerve, therefore he deals with these things daily. You might want to try this avenue before to much testing is done as we were told by him that the MRI was even not needed.
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For us this all happened in 2008.  We did not end up doing an MRI.  We did see a neuro opthamologist several times and he said he thinks this is just how she is.  She has never had any symtoms.  We see an opthamologist every year now for monitoring and he takes some kind of digital picture each time to see if there are any changes.  So far so good!
Avatar universal
Hi mom4033 - I just read this strand of comments in re: your daughter's Kindergarten vision test and the subsequent angst it caused you.  I would like to strongly urge you to get an MRI done for your daughter. The reason I am 'strongly' urging you to get the MRI done is this; my wife wen to a 'routine' eye exam last year as she felt her vision was a little 'off'.  Her Optometrist noticed a build up of fluid behind her eyes, indicative of papilledema.  He said the condition that he thought she had was Pseudotumor Cerebri.  Where there is the appearance of brain tumor but, none exists.  To rule out a tumor, my wife had a CT scan done (4 days later).  Within a week, she was having a baseball sized tumor removed from her brain.  She has subsequently lost her vision because of the damage to the optic nerve.

There is a good chance that her vision could have been saved if the tumor was found earlier.  Your daughter is young, please please please have an MRI done - or at the very least a CT scan of her brain.  You will not be able to forgive yourself if something worse is there and her vision is affected or God forbid, she loses her vision.

I'm sorry to be so 'to the point' but, this is serious.  I scan the internet every day for some glimmer of hope for my wife and anyone's ability to help her with her optic nerve regeneration.  And when I saw this back and forth and your update that a scan still has not been done, I felt compelled to write to you.

If you want to discuss this further, please either email me at ***@**** or reply to this comment.

Thank you and good luck!!!
Avatar universal
My son was just diagnosed with the exact same thing.. I was urged to do an MRI including an injection of dye.. I'm worried because he suffers from allergies. I'm not sure anesthesia or dye are that safe. He's only six!
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I know it has been 4 yrs since you posted this but just in case you still get an alert to replies I wanted to ask you what the outcome of your son's case was.  my 17 yr old daughter just underwent the MRI and LP at the hospital, both came back normal and even the er dr said he is baffled and referred us to a neurologist
Avatar universal
Hi, i have read all ur posts and i would like to.ask how ur daughter is doing.i have a five yr old son that had optic nerve swelling and we wete sent for him to get a MRI, it.came back saying he had a cyst pressing on his brain stem, so he had surgery. After his surgery his optic nerve swelling is still present and i am honestly very scared after all we have been through. I was wondering is it normal on some people or will it eventually cause vision problems. Thank you for any response.
Avatar universal
Hi I just want to add that you should definently get it checked. My daughter was 7 and had lots of headaches they sent her to a neurologist and that doctor seen she had swelling. We then got sent to the childrens hospital for spinal tap and found she had lyme disease. She had a port put in her for about a week to inject her with meds and after that she was fine. She is now 12 and today we took her to a routine eye check up and the doctor found her nerves were swollen again. I asked the doctor if it could be from the lyme disease and he said he doesnt think so but not really sure. So next week we have to go for more test and if they come out not so good he sending for a mri. Im just curious if the lyme diseas could have came back? Im getting a little nervous
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