Moderator said on 11/09/2009 at 5:33 pm
Cabell said on 1 July 2009:
Hi I am 25 yrs old, and have been diagnosed with drusen. I woke up one morning with a fuzzy spot in my left eye, which has never gone away! No one knows much about it, and there seems to be no known treatment for it. My eyes have adjusted, but my periphery vision in my left side is badly impaired.
Worst thing is, i've only recently passed my driving test. before i start driving i have to speak to the DVLA about my condition. I am terrified they will revoke my license. Does anyone have any experience with the DVLA on this issue? How much do they know about the condition, and how do they discriminate whether you are road worthy or not.
has anyone tried acupuncture or know of any homeopathic remedies for the condition beyond fruit, veg and oily fish?
Any advice would be great. Cab
Moderator said on 11/09/2009 at 5:33 pm
Sueclarke said on 10 September:
Dear Carli28,
I see these funny bright lights too, its like crazy paving, when I close my eyes at night, it's like seeing my own blood vessels. (in my left eye only, the one which I have lost the most vision).
My 2nd MRI scan with constrast dye was normal thankfully. My last two visits in march and this week, the consultants I saw now give a different answer to my vision loss. Apart from having bilateral optic nerve drusen, I have small pale optic nerves,( they think perhaps from birth),with crowding of the blood vessels, which could have caused a bleed or interuption in the blood supply. This fits more with my sudden onset of vision loss and headache rather than migraine which I had'nt had for thee years precceding and now not for two years since. Anyway it was not like the migraine that I have had; zig=zag lines for twenty minutes followed by sick headache, then resoving Quickly.
The bad news was my visual field in my right (good eye) is slightly constricted, which it was'nt before , although my left eye was "largely unchanged).
The consultant said optic nerve drusen, although it can progress never causes blindness and you would never loose central vision only pheriferal vision.
They are very good at the Birmingham and Midland Eye Hospital, its always so busy, I waited 3 hours on monday, but it is worth the wait as they are excellant.
Nice to keep in touch with everyone, let me know what happens after your next appt.
Moderator said on 11/09/2009 at 5:33 pm
carli28 said on 7 September 2009:
Hi ruthie371, thanks for replying. I have an enlarged blindspot in my left eye, i see millions of little sqiggles on bright backgrounds ie, the sky,white backgrounds,etc. I sometimes have them in my field of vision, they look like little eletric lines that weave through my vision for a second on and off if that makes sense? They are hard to explain really. They are not floaters as these are like they are coloured then turn white and dissaper,all in a split second? I also get a green tint at the bottom of my vision? My eye dr says none of these are related to the drusan and the type of drusan i have does not affect the vision? I have asked for a second opinion now and am just waiting. Very scarey as all i have read is bad things about it. Im only 28 and have a young son to look after so im trying to find as much info as possible. xx
Moderator said on 11/09/2009 at 5:31 pm
mrsrn60 said on 7 September 2009:
optic disc drusen can accompany many different eye diseases.
I have it in my right eye, and I have macualr degeneration. they say I have peripappilary choroidal neovascularization in that eye.
I too could see spots when I awoke on a white ceiling if the room was still darkened.
one of those looks like a chimney lying on its side with a cap on it. it had increased in size and was quite black.
however after several injections of Lucentis it is now faded out a good bit and much smaller in size.
the other thing I see currently is what looks like a circular pool or water spot on each side of the central vision. one is smaller than the other.
and there is some sort of specs in there, with a crescent shape that wiggles like a fish feeding.
I have drawn the chimney for my eye doc, in the past, and now i will be drawing these other two spots also.
I think they may be where I have had some hemorrhage...
the only treatments for what I have, are hot, argonne laser, ( of which I do not want, it does not preserve vision, but rather carterizes and area of leaking in the eye and leaves a scotoma, scar in that area) or the Lucentis injections, which help to preserve vision longer.
my left eye some time ago had a small leak in it, and
the doctor at that time used PDT, a cool laser, along with a drug called visudyne. it also left me with a large scotoma centrally and took my vision with in 4 treatments in that eye.
so I highly recomend Lucentis for any leaks that might develop from the drusen, even if they are in the periphery of your central field.
Avastin is less expensive and since you are in the UK, your doctor might use this instead for any leaking.
optic disc druse can be associated with glaucoma, it can also be associated with other retinal diseases histo, and other chorioid, retina problems.
what one wants their RS ( retinal specialist) to watch for, is any change that signifies a leak of fluid or hemorrhage,
in addition. someone mentioned driving with one eye.
I do that now... I have some peripheral vision in the left eye, and still maintain 20/20 in the right eye with the lucentis.
my right eye, has remained at 20/20 longer with the lucentis than my left did with the PDT. that took my left eye from 20/20 to 20/150 within 4 treatments.
I have had 6 Lucentis shots in the right eye thus far, and one in the left to see if it would make a difference.
it did make some difference, but not enough for my RS to insist that i try more in that eye. however if I had said lets do the shots in that eye to see if there is any further improvement, I think he would have.
they are quite expensive however, and so I have just been having them in the better seeing eye trying to preserve my central vision and clear up the peipheral problem....
this is relatively new...Lucentis or Avastin for a peripappilary choroidal neovascularization.
it was always thought they could not treat it, and they would only try to maintain the hemorhage by zapping it with the hot argonne or krypton laser.
however , the more they try the Lucentis/Avastin
and have good results, the more they will suggest it to other patients.
I am letting you all know about it, because it works in helping to hold onto you peripheral vision and keep this from spreading to the central vision.
that still might happen down the road, if they dont come up with some other treatments, but for now, my vision is maintaining at a good level.
I am sorry this is rather long.
Please, insists that your RS docs, treat you, if possible with these drugs. I do not always show a leak on the OCT when i have the lucentis, but I can tell when I need it. the chimney grows, and there is more blurring in my visual field. once I did not do the injection, despite what i saw.... and my eye was much wetter with a bigger raised area on the OCT when I went back in the 4 weeks.
* I see my Rs every 4 weeks, and receive injections into my eye, pretty much every 4 weeks, we have skipped two..
I work as a Registered Nurse, and I am still able to work, read, drive. so this is important information to give to all of you and anyone else who may be in a professional status reviewing these messages.
best wishes to all of you .
Mary
Moderator said on 11/09/2009 at 5:31 pm
mrsrn60 said on 7 September 2009:
Hello Susan
I am just seeing your post and it is quite an old one.
had your medical doctor ever checked you for temporal lobe arteritis?
i was reading were this seems to be a problem that reers its head with optical nerve problems also..
and there is a good percentage of folks, who , when they complain of headache have this.
I think they give a predinsone type medication for it.
mary
Moderator said on 11/09/2009 at 5:30 pm
ruthie371 said on 7 September 2009:
Hi Carli
You don't say whether your drusen are causing you symptoms or not. I too have optic disc drusen which were picked up as a result of investigations into something else. We don't know if they are causing me any problems or not as I have a visual field defect anyway. The neurologist and opthalmologist weren'tparticularly interested in them. I understand that although in some cases they can be serious, in most they aren't. Don't know if that answers your question.
Ruth