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Post Info TOPIC: Prk + CXL
Anonymous

Date: Mon Mar 31 11:55 PM, 2014
Prk + CXL
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Hi everyone! I've been reading your posts for several months now. I too had the PRK + CXL. I'm not sure why I never posted before. I guess I'm the type who feels it may not be of interest to others. But I've now decided something I post may be very helpful to another KCers. I went to Wellington Eye Clinic in Ireland, November 2013. It is a very nice clinic with a wonderful, caring staff. We do not always receive such nice treatment here in the US. Dr . Cummings is a very informative, knowledgeable, hands on kind of guy. I really can't say enough good about him. We are still in contact via email. I was diagnosed with KC at the age of 26. I am now 49 so have lived with this debilitating condition for 23 years. I wore RGPs for the same amt of time. They were very irritating after about 6 hours of wear. I have not been able to drive much distance nor for very long at night in many years. As my RE cornea was thinnest I was advised that I was progressing toward needing a transplant. This terrifyed me so I resumed my research on CXL and within a short period of time decided on this procedure and surgeon. It was in some respects a huge leap of faith. I am very glad & relieved that I went through with the surgery. It does appear that the CXL is working. To stabilize the KC was my main objective overall. The recovery has been very bumpy and slow for me. One of my biggest obstacles is that NO ONE here knows enough about this to manage my post op recovery well. Nor fit me in any good type of correction. My old (Rx) glasses now help me get around & watch TV. I wear Acuvue Oaysys daily. But I am not corrected enough to legally drive. The opt that I see is somewhat a negative Nelson as well. Regarding my progression, I followed the path that was described to me, in that my vision was worse for about 3 months. This fourth month I do see better with ghosting becoming less & less. Flourescent lights (at work) is bothersome and I squint all day. I actually see better at night because the contrast is so great between darkness & headlights on flourescent paint (lines of road/traffic signs) it is amazing. Gray cloudy days & computer screens are very difficult and my overall bisoon is very fuzzy. I lived with fuzzy for a long time but not without correction that was proper for me. Can anyone tell me what they use after this procedure. I think I'm understanding that a lot of you don't need correction. But I know I'll always need something. Just hoping for an easier fit regarding CL & glasses. However, I can't find anyone to manage this. It's as if they are all afraid to just correct the vision then check & re correct in 6 months. I am very eager to be able to drive, see the monitor better & see loved ones faces clearly. Does anyone have any words of wisdom to share??

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Veteran Member

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Posts: 59
Date: Fri May 9 1:38 PM, 2014
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Anonymous wrote:

My vision was worse for about 3 months. This fourth month I do see better with ghosting becoming less & less.


Glad to hear of another experience like mine. I'm halfway through the 4th month right now, and the ghosting is just starting to improve just a little bit. My doctor thinks I won't need glasses when the whole thing is done, but it's feeling hard to believe as I still have a lot of ghosting.



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Date: Fri May 9 4:04 PM, 2014
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Anonymous wrote:

Flourescent lights (at work) is bothersome and I squint all day.


Ask your optometrist about getting a steroid drop prescription. This is what has helped me with light sensitivity. My light sensitivity is getting better, but it's happening *very* slowly. Without the steroid drops, I have bad headaches all day every day.



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Anonymous

Date: Sat May 17 2:12 PM, 2014
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I am officially 6 months out and my last scans showed continued improvement of cornea shape and orientation of cone. The astigmatism is almost gone!!! I am very pleased. I feel that I do not tire as much as before the procedure because my brain is not struggling to view things from the "best spot" in my cornea. I've been researching the novakones & kerasoft IC. But have not found any true reviews. I'm thinking bc they are so new. I'm currently wearing my old RGPs that help a good bit but obviously are not the correct Rx. The schleral lens are VERY cost prohibitive here in the US and reviews have some very negative aspects. Like who has time to empty the "gunk" and refill the saline every 2-4 hours. With my allergies, NO THANK YOU! Has anyone had experience with these new soft lenses? My other option is to just go with proper Rx of RGPs (these are more tolerable now that my cornea shape has significantly improved) but really , really would like to try soft. Especially since my left eye sees very well in the regular Acuvue oasis & I feel with proper fitting it's Rx is "almost there". Thank you all for any input on the soft lenses.

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Deb


Senior Member

Status: Offline
Posts: 119
Date: Sun May 18 5:32 AM, 2014
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Surprisingly, there are lots of soft lens available for KC, however just as with any option for KC, not one works for everyone and it depends on the experience of the fitter too.

Take a look at this topic http://www.kcfreedom.org/t55891965/contact-lens-options-for-managing-keratoconus-and-keratectas/

Since having Topo PRK, your cornea/s should be in the range more than before, or be in better shape (no pun intended!) for KC Soft lenses. Is really good that you can already wear, an easy to get, normal, soft lens now for your better eye.

Debby



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Anonymous

Date: Sun May 18 10:59 PM, 2014
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Thank you Deb. But unfortunately the link will not open for me. It says I can't view private info on this forum. I originally tried to join but it always says my membership is pending. I was very surprised when I got a reply to my original comment/post bc I thought it was never delivered. Anywho I appreciate your time & effort.

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Deb


Senior Member

Status: Offline
Posts: 119
Date: Mon May 19 12:55 PM, 2014
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Click on the confirmation link that you should have in your inbox (your email may not have recognized the sender and could have put it in the spam folder)

Anyway, here is the list from the link

Custom Keratoconus Soft Lens Designs*

HydroKone (Visionary Optics)

NovaKone (Alden Optical)

Kerasoft IC (distributed by B+L)

Soft K (Accu Lens, Advanced Vision Technologies, & Strategic Lens Innovations Corp. [SLIC])

Continental Kone (Continental Soft Lens)

Keratoconus lens (Gelflex)

Soflex (Orion Vision Group)

Ocu-Flex K (Ocu-Ease, Optech)

UCL-55 (United Contact Lens)

Flexlens Keratoconus (X-Cel)

* This represents only a partial list of available soft contact lens designs for Keratoconus.

Good Luck

Debby



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Anonymous

Date: Tue May 20 10:46 PM, 2014
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Deb Thanks. I actually never got an email. But due to our conversation I thought I'd try my login. IT WORKED,, I had given up and hadn't tried in awhile. So I am official now and was able to read the post you referred to. It's great there are so many choices out there. I am going to start researching availability in my area. If anyone has any experience with these please tellme about it!

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