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Optic Nerve Drusen
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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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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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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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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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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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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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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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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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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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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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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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233488_tn?1310696703
Yes, we in the health professions should keep our "wow" and "Whoa" and a lot of other utterances to ourselves.

The odds are very very strong that OND will not cause visual imparement. It's a whole lot better than macular drusen.

JCH MD
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My mother just went to the Ophthalmologist and he told her the she has drusen on her optic nerve. She wants to know if wearing prescription glasses will help with visual loss, preventing it from getting worse and fixing the blurriness she has when she looks at things and especially eye fatigue. Nothing we've read up on mentions wearing glasses, but we was wondering if it could help.
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My mother just went to the Ophthalmologist and he told her the she has drusen on her optic nerve. She wants to know if wearing prescription glasses will help with visual loss, preventing it from getting worse and fixing the blurriness she has when she looks at things and especially eye fatigue. Nothing we've read up on mentions wearing glasses, but we was wondering if it could help.
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Wearing glasses will have no effect on drusen of the optic nerve.
JCH MD
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I found out I had drusen in 2006 (age 20), after being transferred from my Dr to a university hospital. the neurologist  told me there was nothing she can do to help. But I feel there is something more... my eyelids swell in the mornings but return to normal during the day and when I cover my right eye the colours are dim and are an off colour. I also see floating black fuzzy dots- it’s the same as what you would see if you would stand upside down. I have seen what the blind spots look like on google but my spot is by my eyebrow and nose increasing outwards it is not in the middle.  I have told her of these symptoms but she has not done anything different. Are these symptoms normal for drusen?

MGS_990
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No they are not typical.
JCH MD
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Can OND be a precursor to any other illness, disorder or diseases?

MGS_990
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I am a 26 year old female. I recently went to the Optometrist for a blur spot, some floaters and because sometimes my vision goes fuzzy (kind of like a TV when there is no channel) for a few seconds and comes right back. Thought I needed glasses. She told me I had Papilledema and sent me to a Neuro. The Neuro immediately told me I had Pseudotumor Cerebri. However, I believe he is wrong! I have none of the symptoms of it (besides papilledema) and since then have switched Neuro's. Is there a possibility that I may have OND instead and they have yet to just figure it out? What tests can be done?
Thank you!
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OND can be diagnosed by an optic nerve OCT. Sometimes the OND can be seen with ophthalmoscope.

Also OND is not associated with systemic disease.

JCH MD



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this is for Bird6.  I was just diagnosed with optic nerve drusen a few days ago.  It was an unexpected blow and of course i became very fearful.  I am very sorry for what your daughter is going through.  I would STRONGLY suggest she visit this site and even watch one of the videos about this amazing woman from my hometown who has lived with blindness.  She is a sweetheart and I believe her message and strength would be helpful for your daughter's concern.  Having two children of my own, my worries are just as hers are-having to have someone take care of me and the possibility that this may progress to where I may miss some things-visually.God Bless http://www.jenniferrothschild.com/about.html
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This is a good reference on optic nerve drusen. It is very very important to emphasize the OND are common but severe vision loss to OND is very rare.

http://en.wikipedia.org/wiki/Optic_disc_drusen

JCH MD
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I was diagnosed at 13 after originally being told that I actually had a brain tumour. Pretty scary to handle at that age, they were telling me I had to have urgent brain surgery! Im pretty lucky they decided to do a few more scans and then decided it optic drusen instead. Im now 15, and im slowly going blind.
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I have it too , I'm 46 last check 20/200 and they say it dont happen, BS I'M LIVING WITH IT!
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I was diagnosed with optic disc drusen about a year and a half ago.

Today, I am left with a huge blind spot in my left eye (since it's enlarged due to the drusen)

My right eye had bleeding occur from the drusen, and left scar tissue that leaves me half blind in my right eye.

I guess I'm one of those really bad luck people :/
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I was diagnosed with optic nerve drusen today. I have been experiencing a lot of pain behind my eyes, but my neuro-ophthalmologist said that the pain is unrelated to my diagnosis. Is there any way that optic nerve drusen can cause any pain or discomfort at all? If I really do have calcium deposits behind my eyes, can't that be causing me pain?
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OND do not cause pain. Re postings above note poor vision due to OND is rare (we did not say it never occurs only in the worse 0.1%) In a very large practice I only have about 2 patients with poor vision due to OND. None are blind.  Macular neovasculariation can occur in a small # of people with OND and require intraocular injections of lucentis or avastin.

OND in young people are usually NOT calcified, that occurs after the condition has been present for many years. Even my older patients with OND for 50 years do not have pain. you would need to discuss the cause of your pain with the neuro-ophthalmologist.

JCH MD
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My almost 8 year old daughter was just diagnosed today with Drusen at Duke Eye Center here in NC. My main source of worry at this point is wondering if she will go blind? From what I have read online so far, that sounds like a worst case scenario. I work for Duke University Medical Center and I know they have an excellent reputation. However, do we need to see any other specialist? The MD today was a pediatric opthamologist. She wants to see her back in 2-3 months for follow up. Will she need yearly exams, or perhaps more frequently?  I am really trying to remain calm and just find out as much information as I can to help her. Any information would be much appreciated.
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Assuming you're talking about optic nerve drusen and not macular drusen then start at the beginning and read this discussion thread.

You should feel comfortable with your ophthalmologist, if not UNC has a great program in ophthalmology.

JCH MD
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My 12 year old daughter was just diagnosed with drusen. Her eye dr. referred us to a neuro opthamologist. We can not get an apt. until mid July.

The eye dr. discovered the drusen on a OCT scan. My daughter's report states retinal drusen. She has aslo been experiencing some quick flashes of blurred vision in her rt eye.

Can you give me any insight of prognosis ? I am going crazy just waiting for her to be seen to have an ultrasound and furhter testing.

Is the retinal drusen the most common form and also is the retinal drosen not as serious as macular drosen. (I am a bit relieved as I have read the previous comments.)
\Any input will be appreciated. I think I am concerned because of her brief (few second) spells of the blurry vison. Is his typical with the retinal drusen?

Thank you

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There are three types of drusen in the eye: optic nerve drusen and retinal hard drusen and retina soft drusen.  Hard and Soft drusen can be in the macula or elsewhere in the retina.  Spells of blurred vision are not typical of any of these. Hard drusen are often incidental, benign findings unrelated to age related macular degeneration.

There is no treatment for optic nerve drusen and they usually do NOT create vision problems.

JCH MD
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My eye doctor recommended daily drops to reduce pressure in eye as to slow the possibility of complicatons if the optic nerve is less flexible due to OND....is this really necessary.
JJI
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My eye doctor recommended daily drops to reduce pressure in eye as to slow the possibility of complicatons if the optic nerve is less flexible due to OND....is this really necessary.
JJI
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233488_tn?1310696703
You be sure your "eye doctor" is an Eye MD ophthalmologist. If he/she is there is no reason to question this treatment. OND make DX of glaucoma very difficult, in a patient with high to borderline high, or a family hx of glaucoma or very thin corneas I often do the same thing.

If you are still not okay then ask your eye MD to refer you for a second opinion on the drops.

If you see a non-MD, non-physician, limited scope of practice optometrist then I suggest seeing an Eye MD ophthalmologist. You can ask your family MD to refer you or if you live in USA find an Eye MD near you at www.geteyesmart.org

JHCH MD
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Hi John I am a 21 year old female I found out I have optic nerve drusen a few weeks and it really upset me. I have been wearing contact lenses since I was 14 and my eyes are constantly blurry and irritated and my left eye vision appears darker than the right. For years I have been desperate for laser eye surgery as I thought it would be the cure for my eye irritations. Will the new diagnosis of OND stop my chances of being able to get laser done?
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No it won't. Use the search feature and archives and read about OND.  Most people does not cause any visual problems at all. I only have one OND patient among hundreds where it affected their peripheral vision.

JCH MD
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What about my chances of getting laser eye surgery? Will it still be possible to have my visit correctly? Thank you so much for the fast reply
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Vision corrected *
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Will the new diagnosis of OND stop my chances of being able to get laser done?


No it won't.
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I am 20 years old unfortunately ı have OND actually ı dont know macular or nerve optic drusen.my doctor said that there was a swollen in my left eye.ı really confused about it and upset because of that ı am worried.ın addition is it lead to blindness?ı am afraid of it please give strong idea or advice thank u
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233488_tn?1310696703
You need to call back and find out if you have 1. optic nerve drusen  2. macular hard drusen  3. macular soft drusen  4 mid-peripheral drusen.

Each is totally different in its implication on your future and present vision.

If your "doctor" is not an Eye MD ophthalmologist please go see one. If your 'doctor" is an Eye MD ophthalmologist he/she will be able to explain each of these to you and what yours is.

John
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