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Optic Nerve Drusen

My eye doctor just told me that  I have Optic Nerve Drusen. Are you born with this or its it develope over time?
Lizzy
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233488 tn?1310696703
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
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thanks
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233488 tn?1310696703
You are welcome.
JCH IIIMD
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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!!!
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233488 tn?1310696703
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
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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
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203589 tn?1267478770
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)!
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233488 tn?1310696703
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
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    thank You for taking the time to respond to me. I will pass this info on
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233488 tn?1310696703
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I am a 35 year old man, and my mother has had drusens diagnosed since I was a young boy. Although drusens makes her life difficult she has raised twin sons, leads an active and full life, is able to go skiing etc. My mums strength is admirable and I believe that it is her positive attitude towards life that keeps her healthy. I would advise anyone with drusens to take their meds and to lead as full a life as possible. Of course I worry about mum all the time but with loving family support and a healthy attitude, life is looking good for all the family. Mum has had this for over 30 years and it has made her an amazing person with a good heart and has given me full appreciation of the visual delights we take for granted in the world. Mum does not let drusens hold her back.

Mal
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233488 tn?1310696703
I would reiterate that in a long and very large practice I only have one patient where OPTIC NERVE (not macular drusen) DRUSEN have caused major visual imparement.

JCH MD
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i was born with a drusen and it has not enlarged at the time of my last dr appt. wich has been over a 2 years ago and my vision is going blurry does the drusen have ne thing to do with this ?
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233488 tn?1310696703
With drusen of any kind (optic nerve drusen, macular drusen of either the hard or soft type) you need a yearly eye exam. There are lots of cause of blurry vision. See an ophtalmologist as soon as you can. Find one near you at www.aao.org

JCHMD
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1455000 tn?1285274475
If anyone can answer this question I sure would appreciate it.  Can an opticdrusen in anyway be related to laser eye surgery?

thank you
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I have a nephew who is 13 years old diagnosed with Drusen in April- pictures show crystals-losing peripheral vision in his left eye RAPIDLY-has some in right but not as much. I am sick because there is nothing anywhere about children having this?.- we have an appt in Boston the end of June for him, we are from upstate NY. If anyone can guide me to the best MD who treats children with this please if you could let me know,anywhere, we are willing to travel Thank-you
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233488 tn?1310696703
1. There is no relation of optic nerve drusen to laser treatment.
2. There is no treatment for optic nerve drusen. If you're going to Boston you might see The Schepens Eye Research Institute at Harvard.

JCH MD
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I am a 37 year old female.  I was diagnosed with Optic Nerve Drusen a couple of years ago.  I was told it is a completely benign condition, and yet, every time the doctor looks in my right eye, he makes a "WOW" kind of exclamation.  This, and what I have read here make me think that perhaps I should be getting a second opinion?  He did not take any pictures, and I have not had any futher testing.  It was just noted in my chart at the eye clinic.

With this diagnosis, should I be having any sort of follow up tests?  Do you suggest I get another opinion?  My doctor seems to act as if there is nothing to do, as this condition is benign and will not do me any harm.

Thank you for your advice!
Amy
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233488 tn?1310696703
There is no treatment for OND. It can make the eye look swollen and also interfer with glaucoma diagnosis so its important to know you have it. 39 years of seeing hundreds of patients with OND I only have one patient that it has caused peripheral vision damage that bothers the patient and that is the wife of my wife's cousin.

JCH MD
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Thank you for your reply.  It does make me feel better to know that you have seen hundreds, and only one has had complications.  I guess it was my doctor's "WOW" comments that scared me the most.  But, perhaps his comment is becuase he does not see many of them??  I realize this is a somewhat rare condition...

Thank you for your fast reply!
~Amy
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