Optic Nerve Drusen

[lizzy1985]

My eye doctor just told me that  I have Optic Nerve Drusen. Are you born with this or its it develope over time?
Lizzy

[John C Hagan III, MD, FACS]

It can happen both ways. Use the "images" feature of Google and search optic nerve drusen for pictures of what they look like.

There are several typesw of "drusen" on the eye: optic nerve drusen which are described as hard or soft and are part of macular degeneration.  Optic nerve drusen look like rock candy crystals in the optic nerve. The important things are that it can cause an optic nerve to look swollen (papilledema), obscure or simulate glaucoma and in rare cases can cause loss of peripheral vision enough for the patient to notice. It is often heredity. Sometimes the drusen are buried in the optic nerve and only show up with OCT testing.

A baseline visual field and optic nerve photographs are a good idea to do.

JCH III MD  Eye MD

[lizzy1985]

thanks

[John C Hagan III, MD, FACS]

You are welcome.
JCH IIIMD

[Kinnonent]

I have Optic Nerve Drusen and my doctor tested my peripheral vision (which I have done lots of times in the past) to which he said, the test results "weren't good" and that I needed to come back in a couple weeks to have the test again. When hearing news like this I get kinda scared and I can't ask questions and pretend like I am ok... so I didn't ask anything. Can anyone tell me a little more?
Before the test he said I needed to have the test regularly because of the risk of glaucoma. Are these results correlated?

Thanks for any help!!!

[John C Hagan III, MD, FACS]

Read this article:   http://www.emedicine.com/OPH/topic615.htm

Then use Google IMAGES and search optic nerve drusen to see what they look like.

Optic nerve drusen interfers with the best for glaucoma so often the visual fields are NOT accurate.

JCH IIIMD

[Bird6]

My daughter was 17 five years ago and was told that she had optic nerve drusen unfortunately she had picked up a rare gene of it and will go blind.She had her testing done at the moran center, she had already at this time had lost two thirds of her sight. The moran center asked if they could use her medical records on her eyes for study because this was the worse case they at this time had seen in such a young person, they had seen alot of cases of this, this bad but it had been in 80 or 90 year old people. A couple of days ago she again saw the doctor, she has alot more presure in her eyes and can no longer wear a contact lenses. she was told a year ago she should really get prepared and she chose not to I believe this is to do with the fact she can not hardly believe this is happening.Anyway the other day she cryed and told me she never wants to need to have anybody take care of her or her three year old son (my grandson ). Can anybody please help me to find a way to convice her to get the help she needs? I prey this will not be something she is not at least prepared for, i am very affaid of how this will really inpact her life. I also wonder if she will always remember what her only child looked like from birth till now. I am also so affraid of this mentally for her,cause she always wanted another child and how this will hurt her if she could not ever lay eyes on this child when she does. I beg anybody for some advise!              Broken Hearted Mother

[berrywoo]

She does need to be prepared for eventual sight loss. There are many support groups that can be found. Contact your local services for the blind or get in touch with the nearest chapter of the NFB (national federation of the blin). Also, if you're referring to the Moran Center in Utah, I'm sure they have excellent specialists in low vision to help her.

Both you and your daughter need to understand that blindness is not a curse or something to be afraid of. It is still possible to live a full live with a meaningful career and family too. The sooner everyone realizes this the better off the world would be. That is the NFB's position on blindness (and mine too)

Yes, she'll have to adapt to doing things a bit differently, but nothing is impossible. She can still go to the movies (many theaters have headsets that describe what's happening on screen), access the internet (via a screen reader), and read (with Braille or CCTV). There is public transportation in many cities for those who are disabled.  Daily living activites: cooking, cleaning, etc. are all still possible.

Losing your sight can be a difficult adjustment, but the sooner you begin to make the adjustments the better your quality of life will be. Don't go stumbling around in the dark when there are resources and poeple available to help.

If your daughter truly wants to live independently than she needs to take the initiative to get help: learn proper O&M techniques, Braille, screen reading software, etc. She can accomplish anything and everything she wants (ok, I'll admit she probably can't drive, but that's it)!

[John C Hagan III, MD, FACS]

Optic nerve drusen rarely leads to COMPLETE blindness. The worse case I have seen in my practice can no longer drive, uses a reading machine but gets around nicely without cane, dog or assistance.

JCH MD

[Bird6]

    thank You for taking the time to respond to me. I will pass this info on

[John C Hagan III, MD, FACS]

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