All of us Vs Keratoconus

Members Login
Chatbox
Please log in to join the chat!
Post Info TOPIC: epi-on crosslinking 1 month ago
Nikki

Date: Wed Feb 27 11:38 PM, 2013
RE: epi-on crosslinking 1 month ago
Permalink   
 


Carly,

Thanks for the great post. I was diagnosed with post-lasik ecstasia recently and the doctor suggested I get CXL done atleast in my left eye. Since it has almost been 6 months now that you got ur procedure done, did you see any improvements in yoru vision or atleast did KC progression stop after CXL?

Also, you mentioned that you got CXL done because you wanted to start a family soon and that can sometimes worsen KC. Even we are planning to start a family sometime next year and I heard that if get CXL now and get pregnant next year, KC can come back again. Is that true? Any idea?

 

Nikki



__________________


Member

Status: Offline
Posts: 11
Date: Wed Mar 6 12:14 AM, 2013
Permalink   
 

Yep this can occur but the study numbers are small to know by how much and for whom exactely any change may occure, if at all.

Have a read of this: http://europepmc.org/abstract/MED/21705880

The other factor is that you must leave out hard RGPs lenses for around a month (some say longer) to get the right reading on topography as hard lenses squash the cornea by some way and the cornea needs to "unfold".

With soft lenses this does not happen as much at all....and its around a few days of not wearing soft lenses thats needed (depending on the type of soft/hard lens as well of course with this).

My best to you

Penny



__________________
Anonymous

Date: Wed Mar 20 3:51 AM, 2013
Permalink   
 

Thank you for sharing. 'twas your cornea thickness less than 400 um that you went with epi on rather epi off? Also do you have any hazing. thanks again. MA



__________________
Anonymous

Date: Wed Jun 5 4:40 AM, 2013
Permalink   
 

Carly, when did you vision stop fluctuating ? I had the epi on and I definitely got worse in the first one week. It has been two months and I feel my old contacts are not fitting me that well. thanks for sharing 



__________________
Rocky El Sayegh

Date: Wed Jun 26 12:29 AM, 2013
Permalink   
 

Hello,

i am new here, i cam to this site through googling about CXL 

i am a 28 year old Doctor in my 3rd internal medicine residency from germany.

Last April i was shocked to know that i have Keratoconus which led me to several visits to couple of ophthalmologists. my Topography resulted in a moderate to sever Keratoconus in my left eye with a corneal thickness of 408 which is almost the lower limit that man can do the CXL (its 395 to 400 ) which meant that  i don't have much time to wast considering that my  allergy season was just kicking in.

5 days ago i did my CXL in my left eye.  the first 6 hours after the local anesthetic effect started to wear off were a pure hell on earth that i had to face with Ibuprofin and novaminsalfon which didn't do a thing. after that the burning sensation was bearable and by the end of the day the pain was almost gone.
today (day 5 after cxl) after my contact lens fell off and after an rush visit to the clinic i found out that the corneal epithelium had completely healed.i still feel abit of haziness in my eye but the vision is almost the way it was before if not slightly better

keep ur fingers crossed for me too 



__________________
Anonymous

Date: Wed Oct 23 11:06 AM, 2013
Permalink   
 

Hi, my husband has just had cross linking done today. On the drive home the pain started to kick in. I have never seen him in this much pain ever. The doctor gave him panadeine and phenergan and they don't seem to be helping at all. It is so frustrating knowing that I can't do anything at all for him. I do have hope after reading all the posts that it won't be for too long :) thanks heaps for all the insight, it has stopped me crying :)

__________________


Veteran Member

Status: Offline
Posts: 53
Date: Wed Oct 23 10:53 PM, 2013
Permalink   
 

Things should get better 24 hours later with regards to pain, and decrease there after to at the most, a discomfort, which should pass as things settle down. It seems that there is no gain without pain! smile



__________________


Newbie

Status: Offline
Posts: 1
Date: Tue Jan 7 7:19 PM, 2014
Permalink   
 

Hi Carly,

Thanks for writing about your experience. I have looked so long online and find very few places where there is a truthful and detailed account of what recovery is like. Maybe this is because CXL is still not as common as other procedures, and relatively new in the United States.

I am about to have CXL done on my left eye in two days. Even though my corneal thickness is pretty good (about 600mm or more), the doctor really scared me because in just three months my topography test results showed that the signs of progression had increased a lot (you know the boxes on the topogrophy report when they are filled in yellow or red? I went from none of them being filled in to having almost all show up red). I had no idea I had KC and I was expecting to go in for a routine check up with this specialist who would say lets check up again in 3 months. Instead he said I needed to do this procedure right away, a procedure I knew nothing about. I went home and cried then researched forever. What sucked was that I knew this was time sensitive but i was christmas time and I couldnt even get a second opinion as no one was giving appointments earlier than a month away. I scheduled an appointment for the procedure with this doctor even though he said he only did epi off as he believed it was more effective. My procedure was supposed to be today, but yesterday I managed to get a last minute walk in appointment with another cornea specialist who has a great reputation out her in new york. In fact he taught the CXL procedure to the original doctor who was going to do my procedure today. He said he would do epi on for me as it is still very effective and recovery and possible side effects are less. I was so hoping he would say that. I hope epi on really is as effective. He also made me fell better because he said Im still in the early stages of KC. I know it is progressing super fast, because even in the last three weeks since I first was told to sign up for CXL, the cornea has deteriorated a lot in the left eye. But the thickness is still pretty good. So now I will be doing epi on CXL in two days.

I am 26 years old and I see pretty well with glasses, but letters are still a bit blurry and my vision is just a but frustrating at times. So, reading too long makes my eyes feel tired. Lights at night can bother me. But I can drive even if the lights bother me a bit. I have always had trouble with soft contact lenses, as they bothered me. Now I know its because it was hard to find a fit for my cornea. But I was able to wear them and tolerate them until three months ago when my prescription went up again and I had to try a new brand of contacts. These I couldnt wear as they stuck to my eyes and were always blurry. I was going to try another brand that might have worked better but then I was diagnosed with KC and I just decided to wait on buying contact until after CXL. But I hope that my previous tolerance of contacts will mean a hopefully more bearable recovery.

Everywhere I read online described epi on as being pain free. But I knew it was too good to be true. And the doctor always downplay everything. I remember I had my deviated septum in the nose fixed a few years ago, and I asked my doctor if he would have to break the bone. He said, no we wont really be breaking it, just causing a slight frissure (thats the same thing!) I was also told the recovery was only week, but I was in terrible pain for two weeks. I probably have a pretty low tolerance for pain. And I must admit I'm freaking out about my CXL. I took a zanax once and instead of calming me I panicked more, I have no idea what that is about. But I can only hope that when they give me the Valium I will actually be cable to calm down before having my eye forced open for over an hour. Im also worried about being able to tolerate the pain medication because I have an extremely weak stomach and horrible acid reflux. In the past I've stopped taking pain medication after a surgery because I was throwing up too much.

I know there is no point in stressing over things I cant control. I guess getting the procedure over with is my only option anyway and I should be grateful it even is an option.

But I would still like to hear other people's accounts so I am thankful for this forum (the only one Ive found so far by the way). Im also interested in how thick everyone's cornea was before the procedure. Carly, do you know about yours? I am wondering if thinness increases pain and recovery period? And thanks for the tip about having cold towels on the ready! I also got a humidifier in hopes that keeping the air moist will help with dryness of the eyes. Its super cold here in new york and my room is always so dry causing sore throats.

Thanks everyone for sharing their experiences!

__________________
«First  <  1 2 3 4  >  Last»  | Page of 4  sorted by
 
Quick Reply

Please log in to post quick replies.

Post to Digg Post to Del.icio.us

www.kcfreedom.org

Knowledge Works