Our Eyes (original) (raw)
Thu, Jun. 11th, 2009, 01:54 pm
kegel84: (no subject)
Hi, I'm glad I found this community as it gives me the opportunity to talk about the trouble with my eyes and the worries I've had the last couple of days.
I'm living in a region which has a lack of doctors, especially specialists. It's difficult to even get appointments at eye doctors. I haven't been at one in about five years and until this week I didn't worry about it.
I've been short-sighted my whole life (I'm 24 now) and went regularly to an eye doctor as a kid. It was some really old man and he never did or said anything else than just prescribing me new glasses when my vision had gotten worse again.
When I was 17, the doctor retired and I had to find a new one. She actually made a few others tests than the previous one had done (where I usually only had to read numbers...), mentioned some medical words that I didn't understand and prescribed me hard contact lenses.
For me at 17 they seemed to be a cool alternative to glasses at first, but eventually, I hated them because my eyes grew tired with them so fast, it was always like I had tons of sand in my eyes. So I didn't use them anymore.
I went to university then and in the course of that time I went to two different eye doctors, neither one mentioning anything worrisome to me.
This week I went to a check-up at an optician and they noticed quickly that I need new glasses. Then they started doing more tests and suddenly several employees were staring at my eyes and at their computer screens and talking about numbers and freaking me out. They told me to go to an eye doctor soon because they think I have Keratoconus and how it can end really badly.
So I've been trying to get an appointment, have called several doctors, but only got an appointment in September.
So the last couple of days I've been really freaking out. I didn't notice any problems before (besides that I'm obviously very near-sighted).
Today I finally had the idea to check the medical files my parents still have. I found the one from when I was 17 and there is says it: "beginning Keratoconus". It was what that one eye doctor had mentioned without explaining anything, which had also meant that I didn't think much about it and actually forgot about it until this week.
So I probably won't get any appointment before September as it seems, but have it already in black and white that my eyes have Keratoconus. On the one hand I'm really worried about its progression in the next years, on the other hand I have somewhat calmed down now, thinking that when I had it 7 years ago and still can see somewhat okay today, I will probably see something tomorrow, too, and it's okay when I go in September.
As I said, until the eye exam this week I wasn't aware of any problems besides the short-sightedness. When I look back now, I see signs though. For example am I quite sensitive to light. I tend to wear sun glasses pretty often, just when there's a little bit of sun, but I used to think that this wasn't anything unusual 'That's what sun glasses are for after all, aren't they?'
Okay, I've talked enough here, it's just that I've worried so much the last couple of days (as I told my grandma today, I don't just need an eye doctor, but a shrink, too).
Wed, Mar. 26th, 2008, 09:33 pm
mystress_vatra: Project New Eye: Update
hey everyone!
it's been a while since my last posting, but that's mostly been due to the fact that i had the cross-linking done, and there was quite a while of mega-squinting (it sounds lame, but squinting all day will give you a wicked headache!).
i went back to my eye clinic today for a check-up and got awesome news: not only are my eyes healing really well, but my sight actually improved in the left eye! you can imagine how stunned everyone was - we went ahead with surgery just to halt the thinning of my cornea, so having the sight improve is a huge bonus that we never even considered! i couldn't believe it - i was on the verge of happy-tears all day. you know when you're on public transit, and there's always that one person who's laughing to themselves, and everyone else moves away ever-so-carefully? that was me and my mom on the subway! we'd burst into happy giggles out of nowhere. yes, we looked crazy, but i'd do it again in a heartbeat. :p
i have to say it: if you're even thinking about the C3R operation - it's really worth it! i know, i know, we've heard it all before "results not typical", but it's given me a second chance. which is not to say it's all gum-drops and unicorns, rainbows and lollipops - it can get really frustrating to see nothing but blurriness for a month; and audiobooks are only so much fun; and yes, it gets to the point where if one more person says "just be patient" you want to poke them in both eyes as hard as you can and then ask them to "be patient" - but todays diagnosis really made it worthwhile. all the drops. all the "no i can't see that!"-s. all the squinting at everyone and everything - and all the possible wrinkles i may have given myself - all worth it.
i just really wanted to thank everyone who took interest in this, who cheered me one, wished me luck, all my friends who had to help me cross the street and point out the obvious for me - it really meant (and still does) sooooo much! and for everyone still dealing with their keratoconus, i know this sounds super-corny, but really, there is hope, it does get better, and you can totally beat this thing!!
Sat, Feb. 9th, 2008, 08:20 pm
mystress_vatra: (no subject)
hi everyone!
ugh! i just typed a long description of my crosslinking procedure out. you can find it at http://mystress-vatra.livejournal.com/ or the friends page here (sorry, my mind is a little, well, under the influence of pain-killers right now!). grab a mug of tea and settle in, it's a bit of a read, but i felt the need to cover all the aspects that i (prior to going in), had been wondering about myself. hope this answers any questions, but feel free to ask more if you want.
Sat, Feb. 2nd, 2008, 10:19 am
Hi everyone. I just joined and wanted to post. I'm 26, and have been officially diagnosed with keratoconous for a year, but looking back and reading about all the warning signs, it seems that it started about 4 years ago. I tried the RGP lenses, and they worked up to a point. Then my vision started slipping really badly, changing (at one point) from week to week - by the time i was fit for new lenses and they actually arrived, i would need new ones, so expensive contacts were not the way to go!
So far, what posts i've read mostly deal with corneal transplants (forgive me if other topics were covered, i was super-eager to post), but there are other options - especially ones that are not as intrusive! I'm trying a fairly new one out this week, it's called crosslinking; instead of removing parts of your cornea, the top layer is lifted, a riboflavin drop is put in, and UVA is shone on it to activate the drops. Then the top layer of cornea is placed back down, and a "bandage" contact is worn for 5-6 days - i'll let you know how it all turns out (if you don't mind reading about it, or hearing more from me). From what i've heard, crosslinking has been done in Europe for 5 years now, on kids as young as 14, all with really positive results, so while i'm a weensy bit afraid of it, i'm also really excited. :)
i just wanted to share this because i know when i was diagnosed, the first option i heard about was the transplant - and it was really scary to think that if i wanted to see, i'd eventually have to take this risk. Hopefully, this will help some people to relax and feel better and more hopeful; and even lead to stronger corneas for some.
http://www.usaeyes.org/lasik/faq/c3r-crosslinking.htm
http://www.ncbi.nlm.nih.gov/pubmed/12719068?dopt=Abstract
Thanks for listening!
Wed, Jan. 30th, 2008, 05:09 pm
icy_paprika: (no subject)
Hey everybody,
I am really glad to find such community as this!
I'm 20 and today my doctor confirmed I have a keratoconus. I haven't been tested yet and don't know at what stage my keratoconus is.
I started to wear glasses 5 or 6 years ago and heard that this is impossible in keratoconus case as you have to wear RGP contacts or kind of. But i'm afraid, my eyes are too sensitive and contact lenses is not the option for me (( Moreover, i got used to glasses and can't imagine my life w/o them. What are other possibilities for me? Maybe eye surgery is better? I heard they make smth like a transplantation of cornea, is it necessary and how long does it take to recover?
And my biggest concern is how keratoconus affects your life? Is it possible to save your eye-sight? I'm a beginning photographer and this concerns me a lot. Could I continue with that?
Thanks for the community,
Aisha
Sun, Dec. 16th, 2007, 08:20 am
Hello. I wanted to say hi and see if I could could express myself in a more coherent way than the last time I tried to explain what has been happening with my vision.
Over the last 5 or 6 years there have been large jumps in the amount of power in the lenses, but while they wanted to keep tabs on it, I didn't think much of it since it was correctable to 20/20. Then last year it was only correctable to 20/30, but hey that's pretty close, right?
About 3 weeks ago my glasses were destroyed and I've been walking around in this fog (please don't read that as the "oh poor me, I'm so blind without my glasses", it's simply what it says). When I went in to the opthamolagist and got the new exam this time the best he could do was 20/60. He kept asking if I was ok with that. What was I supposed to say? I simply replied that if that is the best you can do then that is the best you can do. It really didn't hit me until later that this was a kind of big jump for the last time, and that it really wasn't so close to 20/20 any more. He also let me know that while they aren't sure why this has been happening over the last 5 or 6 years that they expect it to continue. Again, that didn't really sink in until much later (the idea that at some point even with glasses I may be seeing the world like I have for the last few weeks is at the very least scary).
I didn't get a prescription that day because of concern over the drastic increase in the amount of prism that was required. Prism has been in my glasses for 20 years and like everything else it increases each year. Apparently the more prism, the more dependent the eyes can become dependent on it and the muscles can become weaker over time. So, they wanted to have a specialist look at this before writing the prescription. While there is surgery and therapy to help with this issue, from what the doctor said it works best with children and I most likely wouldn't benefit much from it. The real problem is that the muscles have become weak enough that I can't keep much control over the movement inward. Some extra reading on this seems to indicate that it might be part of the reason that my balance has always been so bad and some other sensory problems.
Thanks for listening.
Mon, Sep. 17th, 2007, 05:19 pm
nitedreamer: (no subject)
Hi- I just found this community...
I have been diagnosed with keratoconus for about two years. A year ago, I was prescribed RGP contacts, but I am yet to start wearing them...I have eczema around my eyelids (which means I rub my eyes a lot), so I was waiting for things to settle down before wearing them.
I went to an eye doctor a few days ago to ask about getting new glasses. (Mine have developed some weird film, so I am hoping new lenses will help my vision.) I talked to the doctor about my contacts, and she said I needed to get them checked before starting to wear them in case they no longer fit. I spent $340 on contacts (insurance wouldn't cover them) that I haven't worn outside my fitting, and she's telling me I might need new ones? :(
I went looking for the contacts, and since they have been largely forgotten about while dealing with the eyelids, the fluid they were stored in was gone. I didn't touch them, but added new fluid. Do you think the contacts are ruined anyway?
My biggest worry is that one day I will have keratoconus in my other eye too- I've heard 90% of people have it in both...my right eye is like looking through a couple layers of wax paper (unless I have the RGP contacts in, which was a huge improvement), my left eye isn't affected. I worry the eczema will keep me from wearing the contacts, and that one day I won't be able to see at all. :(
Wed, Aug. 29th, 2007, 04:56 pm
stringofpearls: Seedlings Braille Books for Children
Hello Everyone!
My mom, Debra Bonde, is the founder and director of Seedlings Braille Books for Children and she is currently in the running for an award which would provide Seedlings with 10,000tocontinuetheirmissionofprovidingblindchildrenwithaffordablebooks!Thisyear,a"people′schoice"awardhasbeenadded,sothatanadditional10,000 to continue their mission of providing blind children with affordable books! This year, a "people's choice" award has been added, so that an additional 10,000tocontinuetheirmissionofprovidingblindchildrenwithaffordablebooks!Thisyear,a"people′schoice"awardhasbeenadded,sothatanadditional10,000 will be given to the charity of the finalist who receives the most online votes.
If you could please spare a few seconds and go to http://www.standonabetterworld.com/vote/index.html and vote for Debra Bonde in the "National" category, we would really appreciate it!
For additional information, behind the cut is a statement that Seedlings has sent out about the award
Thanks so much! Let me know if you have any further questions or anything :)
-Megan
(x-posted)
Thu, Aug. 2nd, 2007, 02:09 pm
A very warm thank you to all those kind words I received - I will be sure to visit often. ANd don't get me wrong I can take criticism but vengeance hurts. :)