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, FAAO]

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[John C Hagan III, MD, FACS, FAAO]

I don't see a new post or question in this discussion. If someone has posted please repeat it or start a new discussion.

[Notteck90]

Hello, I have OND and severe pain. I can not work anymore, do not go shopping and drive a car anymore. When I sleep, I wake up in the REM phase. Eye movement pain causes a very severe headache. Do you have experience with it?

[John C Hagan III, MD, FACS, FAAO]

OND are NOT painful. Never. You would have to look for a different cause for the pain and headache. You will need to work with an ophthalmologist to do that.

[Notteck90]

I am in a Facebook group. Optic nerve head drusen support group. There are 136 patients from all over the world. I have created a survey. 1.6% are blind and 13% have very severe vision losses. Some people have been in severe pain for years. My pain is so bad that I often think about having my eyes taken out. There are children who are blind and wake up in pain at night. I have been to many ophthalmologists and neurologists. It's the drusen.

[Notteck90]

Please look on this page:

https://www.reviewofoptometry.com/article/recruit-dismissed-after-drusen-are-discovered

On rare occasions, ONH drusen may have associated symptoms such as migraine headaches, seizures and transient visual disturbances.2

[John C Hagan III, MD, FACS, FAAO]

I did look at that article. NOTE:  "Typically, patients with ONH drusen are asymptomatic."   Note also that the only study attributing migraines and seizures is from 1999,  says its extremely rare, is not a controlled study and other reports confirming this have not appeared in the literature. So I would say 99.9% of people with OND have no pain.

[Notteck90]

It can be. But these 0.1% are very very painful. Can you imagine what's different about people?

When I go into the light it stings on the papilla. The eyeballs are swollen in the morning. When I move my eyes, I get a lot of headache and pain. Especially the left temple hurts. The pain is so bad that you get chills and neck pain. If I look in one direction for a few minutes, it always stings in and behind the eyes.

Thank you for your reply.

[Notteck90]

Do you have any hints on how to slow down the calcification or stop vision loss? Some doctors say that diet can help. Some say that you should not play wind instruments and should not do weight training. Some prescribe drop-down drops. There are doctors who say that women should not choose a natural birth.

[John C Hagan III, MD, FACS, FAAO]

There is an association of OND with pseudotumor cerebri also known as benign intracranial hypertension. OND makes the latter difficult to diagnose.  Link  https://jamanetwork.com/journals/jamaneurology/fullarticle/587143     Some physicians treat OND with diamox in case they have both problems. I have no experience with this.   Vegetables especially green leafy vegetables help improve the blood circulation to the optic nerve.  Thus spinach, greens, kale, broccoli, etc are desirable.  Smoking (nicotine/cannabils), hypertension, diabetes, obesity all are bad.

[John C Hagan III, MD, FACS, FAAO]

OND can mask other neurological problems such as pseudotumor cerebri  see  https://www.ncbi.nlm.nih.gov/pubmed/19645406

[Notteck90]

Thank you very much. I was on MRI and the opening pressure on the rump puncture was 19. No PTC doctors said. I only have pain with eye movements. It is to be crazy.
Right, the optic nerve head is very swollen and full of drusen. On the left, I only see a druse in the photos, but the pain is getting more and more.

[Pbatlanta1]

When I was approximately 13 years old I was diagnosed with a "profound" case of ocular nerve drusens syndrome. (The optometrist was a bloody idiot and scared my mother to death) In my case, it was determined that it was familial.  My vision in my right eye is so bad that if I close my left eye and raise my hand in front of my right eye I can't see my hand until it's halfway up into my visual field. What I have found with this condition is that it impacts my life in certain ways. For instance, in the United States, we typically look someone in the eye when we shake their hand, in my case, I have to glance at them with my left eye so that I can see their right hand and not miss it, which is happened on several occasions, to my great embarrassment. Some of the other problems I experience are at the grocery store. I have difficulty identifying items on the shelves because I have to be able to step back far enough for my field of vision to be able to see all the products on the shelves. Also,  I can't look up and see the signs for the grocery items on the aisle without running into something on the floor, usually a person, or a grocery cart. Other problems I have are with certain sports I cannot play, such as softball, baseball or any other type of sport including golf where a small ball is involved, either coming at me or leaving from me at close range. I seem to be able to play soccer fairly well. Although mountain biking is difficult for me since I have to both look forward and down at the trail to make sure I don't hit anything which causes it's on particular problems. Also, I'm very clumsy, particularly on my right side; constantly running into chairs or any objects that are low lying. I'm particularly known for catching door frames on my right side which is to say, a little embarrassing. At 43, I don't feel my drusens has progressed and I don't feel that it has significantly impacted the quality of my life. Also I've had the advantage of being followed by quality ophthalmologic physicians at two universities in which Both cases I became the poster child for drusen syndrome for all new incoming ophthalmology fellows. - Nothing like having 15 people crowding around you waiting to look at your eyeballs with bright lights and commenting on how "pretty" the drusen's were.

It's taken me 20 years to identify some of the inadequacies that drusens has caused me over the years and one thing I can say is that I wish that there was a support group that people with this condition could share their experiences and coping mechanisms with. It would've helped me figure out how to best handle my condition without having to take 20 years to figure it out on my own.

[TMF84]

My 19-year-old son has OND. When he was 15 he lost peripheral vision suddenly in his left eye. Recently, he suddenly lost peripheral vision in his right eye - his "good eye." He sees a neuro-ophthalmolgist in St. Louis. She indicated that a specific type of glaucoma drops may help relieve the pressure but there is no medical evidence to back this up, only a tangential study in rats with a different condition. We don't know what to do, we are gravely concerned that this could affect his central vision and are searching for anything that might slow this down or stop it.

[Danaspiv]

I started taking Alphgan for my drusen. It has helped with the pain management aspects of it. It won't 'cure' the drusen, but I don't feel like my eyeball is about to pop out of my head with the pain.

[JohnHaganMD]

Alphagan is a glaucoma medication for lowering eye pressure. It is not approved for optic nerve drusen. No treatment available for OND

[ODDrusen]

Hello, I am 45 yo, and i have just been told i have optic disc drusen. Since i was a child, I have been told my eye was "lazy". Never the less, I am faced with this "condition". My vision over the last month has decreased in my right eye dramatically and have had tests to conclude i have o.d.d.
I am concerned and have mentally been affected as my life and or life style may have to change.I am left with no answers as to a remedy or treatment that i may look into and am wondering if anyone has any answers to repair,prolong,improve….Drugs, natural herbs….Anything that can be shared would be greatly appreciated...

[John C Hagan III, MD, FACS, FAAO]

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

[erenarm]

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

[John C Hagan III, MD, FACS, FAAO]

Will the new diagnosis of OND stop my chances of being able to get laser done?


No it won't.

[TARAJADE1]

Vision corrected *

[TARAJADE1]

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

[John C Hagan III, MD, FACS, FAAO]

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

[TARAJADE1]

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?

[John C Hagan III, MD, FACS, FAAO]

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

[buzzard3131]

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

[buzzard3131]

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

[John C Hagan III, MD, FACS, FAAO]

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

[lis75262]

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

[John C Hagan III, MD, FACS, FAAO]

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

[angie757]

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.

[John C Hagan III, MD, FACS, FAAO]

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

[leslie2150]

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?

[cad320]

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 :/

[rromine]

I have it too , I'm 46 last check 20/200 and they say it dont happen, BS I'M LIVING WITH IT!

[EveAlexandra_]

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.