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Post Info TOPIC: New Diagnosis


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Date: Sat Jan 28 9:53 PM, 2017
New Diagnosis
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I went in for regular eye exam as I do every year to year and a half.  The eye optometrist said he could only get me to 20/30 vision and suspected I might have distortion in my cornea(s).  They did an eye mapping and found that I do have corneal distortion. He said mine is more rare in that it's in the center of my eye(s).  He also said he's been seeing a LOT more people suddenly having this issue and he's not sure what the influx is caused by.  

He did refer me to a doctor for more testing, and possible correction. I can see pretty well during the day. It's my night driving that is suffering because I can't see as well in the dark.  I can't see signs until I'm right up on them.  If I'm in a familiar area I do fine because I know the speed limit and landmarks where to turn.  But I will not drive at night in unfamiliar settings.  I also have problems with peoples headlights at night. Especially the newer cars have those brighter lights. It almost blinds me and I can't see.

I will be making an appointment with the specialist on Monday.  Are there questions I should be asking? What should I be looking for?

I know that one treatment is with contacts.  However, in my 20's (now 40) I did do contact lenses but because my allergies have gotten a lot worse I can not wear them.  I am on allergy medication (4 different kinds), and still have issues.  I can't wear contacts.   So what other treatments are there for correcting the issue?

Also I've noticed  that with my glasses I can not see close up. Everything is blurry. I have to remove my glasses to see small print up close.  At first I thought I just needed to adjust to the new glasses but when I went back to my old glasses I noticed it did the same thing.  Is that common with this condition?

Thanks in advance,

Mel



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Date: Wed Feb 1 6:38 PM, 2017
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Hi Mel,

First of all, I am NOT a doctor, just someone who has lived with keratoconus for 50 years.

The good news is that it sounds like your keratoconus (if it is keratoconus) is fairly mild. Yes, I know that not being able to see street signs at a distance and being blinded by headlights at night are major issues. But it could be much worse. If you otherwise feel comfortable, a GPS unit that announces street names can be a help with the street signs.

Another bit of good news is that if you are in your 40s, your corneas are likely starting to harden from exposure to sunlight. So don't rush into cross-linking if it is suggested. I would want to have my corneal topology carefully monitored to see how stable it is, or isn't, before considering cross-linking.

Now the bad news. Contact lenses are probably the best option with regard to improving your vision. There have been a lot of improvements in contact lenses in the past 20 years. I don't know if any of those advances will make it possible for you to wear contact lenses with your allergies. But I would get aggressive about trying to reconcile your allergies and wearing contact lenses. It is probably your best hope for improved vision. (BTW, there are plenty of people here who would love to have 20/30 vision WITH contact lenses.) If you do manage to reconcile your allergies and contact lenses, the scleral lenses fit by Dr. Greg Gemoules in Texas (laserfitlens.com) might provide the best possible vision for you.

Don't discount the possibility that the right glasses might be more helpful than you expect. Prescribing glasses for people with irregular corneas is challenging. Only a few optometrists have the "touch". I managed to live most of my life with just glasses. Maybe 1 out of 4 optometrists I saw were able to prescribe glasses that worked well and even among that group, some were clearly better at it than others. You have to kiss a lot of frogs before you find your prince.

While laser surgery is normally not recommended for people with corneal distortion because of the instability of the cornea, you might be an exception. You would want to go to someone who is EXTREMELY competent and ethical with regard to laser reshaping of compromised corneas if you want to even consider the possibility. They need to evaluate the thickness of your corneas and they probably would want to track the stability of your corneas for awhile before deciding whether the risks of reshaping the cornea are acceptable. And they would probably only do one eye at a time to avoid really messing up your vision in case things don't go as expected, just to underscore that this isn't something you should undertake lightly. You most certainly do NOT want to go anywhere near your local "laser vision mill" that advertises on the radio and has a marketing agreement with every optometrist on the block. One doctor I would trust to explore this possibility is Dr. Yaron Rabinowitz of Beverly Hills, California (laser-prk.com), if you can manage seeing a doctor in Southern California.

Please understand that you are now part of a small group of patients with a difficult visual condition to correct. Your eye care is going to be much more expensive and time consuming. Don't let it frustrate you. There are solutions. But be patient because they aren't easy for your eye care practitioner to find.

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Date: Thu Feb 2 7:34 PM, 2017
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Thank you for your reply. I have an appointment with a doctor that specializes in KC but also other eye issues as well. I see him on February 17th at 8:45am. I had my eyes checked on the 23rd of December but waited to get my new prescription in my frames untill about 4 weeks ago. And already my vision has changed again. It's worse at night with the tail lights, reflective signs and stop lights. So I may need to have my lenses changed yet again with a different prescription. :/ Mel

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Date: Tue Feb 7 5:23 AM, 2017
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Unstable vision is one of the symptoms of keratoconus. Years before I was diagnosed with KC, an eye doctor joked that my prescription would change between the start and the end of my appointment. But seriously, if your prescription is changing within a matter of months, then you may be a candidate for cross-linking. And you most likely should not consider laser surgery. Good luck with the specialist.

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