My Keratoconus Experience from Diagnosis to Intacs and Cross Linking - www.KCFreedom.org

Date: Mon Jul 30 10:16 AM, 2012

RE: My Keratoconus Experience from Diagnosis to Intacs and Cross Linking

EKB · Member

Hey guys, I was wondering your feedback after you had the intac surgery. I had the surgery 4 days ago and had intacs placed in my right eye. I am beginning to worry because my vision isn't getting any better. In fact it has been worse. Before the surgery I was seeing 20/30 and now I am seeing 20/50. My dr told me to give it a couple of weeks for the blurred vision to go away, but it seems that others have had vision improvement the day following surgery. Also, I am noticing halos and glares at night now. I drove at night for the first time after surgery last night and I found it difficult. Did anyone else experience any kind of symptoms after surgery and if so, does it get better? I know it has only been 4 days for me, but at this point I'm ready to have them removed. :( I'm starting to freak out!

Kelly · Veteran Member

Are you getting follow up appointments ? Was the 20/30 uncorrected ?

Usually you would have an appointmrent 24 hours afterwards with any surgery, if thats happened then your Dr will be able to tell want is happening, and then you should get more appointments until things have settled down. Pay close attention to your Drs advice and let us know what he has to says.

How good is your other eye ?

What was the reason for having Intacs ?

You should contact the center and Dr so you may put your mind at ease.

My best to you

Kelly

EKB · Member

Kelly, I went for a follow up appt. the morning after surgery, which my vision was very blurred that day. I also just had my 1 week follow up today. My vision hasn't improved any in the eye, but the dr said that everything is looking wonderful. He said my eye is healing very well. There is still a little bit of swelling, which is why I have blurred vision. He wants to see me again in 10 days to see if my vision has improved any. He told me that I really need to be patient and try to deal with the blurred vision for now. My left eye is seeing 20/20. Thankfully I can do my daily tasks using this eye. The Keratoconus hasn't advanced in that eye yet, thank God! My right eye is the only eye that is being affected by the disease. I've been really uneasy since my vision in the operated eye has worsened after surgery. However, I'm being patient like my Dr asked. He told me that he's almost positive my vision will increase with time. Thanks for your reply. Greatly appreciated!

-Ethan

Kelly · Veteran Member

Ethan, wait and see, as there isn't much else you can do because there is no alternative. Its frustratingly slow, and its understandable you are concerned, however there are no quick fix's. In any event, the chances are good for you since your Dr has been able to provide for you this option, to harness its benefits for your patient case. The surgery has gone well in that it went smoothly, however its a matter of seeing what the final result may be, either with glasses or contact lenses and at what degree without them, and usually the final result is directly propositional to the level of KC that was present to start of with. If by chance the Intac needed to be removed or changed, it can be, as well.

Its easy to fill your mind 100% with worry when what it should be is much much lower in reality with the risks and complications. You should read about the risks and complications (and they are on-going!) of Keratoconus contact lenses! There is plenty of studies on contact lenses online.

Your Dr should have done a "pin hole" test. This would allow it to be known what your vision could be while the healing is going on. We all heal differently and even each eye can be different (ie corneal thickness, biomechanical strength, corneal fiber alignment etc)

Kelly

sceaux · Member

Hello to everyone!

first of all i would like to appologise for mistakes in my text because english is not my native language since I am from Croatia. I register myself here becuse I think to have more informations and some positive stories of how you deal and cure from KC, as I am also one of having it for many years ago. So i can share my story also as a "KC member."

As EKB - Ethan have some problems and long period of vision healing, I can say that the same was in my case. My intacs surgery was on 2007 performed by german doctor and all was rather OK except of so long time to recover a vision well, it takes almost few months after which I finally received soft lenses instead of RPG-ones. I can say that all was worthy because I had so much problems with RPG lenses to wear, mantain and so on. now with soft ones, life is much more easier, of course, vision is not like it was before KC, but all seems by now to be right.

Now, 5 years later, my vision is, as claimed by my doctor, very well, now only thing about which I concern is that originally Intacs is helping by better and easier vision, but not primary to halt of to descend a KC progress. In my country and as I found on net, there is not so much about both procedures (Intacs / Cross Linking) said/written in objective way displaying both good and bad side of each procedure. Almost each time they say: This one is our proposal, while for other procedure we dont know/it is not OK/it is dangerous/it is worthless, etc.

So I am glad that I read a story from Aaron in which I see that combining of Intacs and Croos linking good results can be achieved. Here I am not concerned so much about perfect vision, I am sure that all of us want to halt a KC disease an some certain stage without need of a corneal replacement.
Many thanks for advices and stories after which many things become more clear, from other sides I will be glad to help someone sharing my experience with KC!

Deb · Senior Member

Thanks for letting us know of your story Sceaux. It is fantasic what you have acheived, and its all thanks to your patient research and your dedication, as you, the patient, are and should be at the heart of your eyecare needs. Certainly Crosslinking should be considered with all types of vision correction.

Your english is very good indeed, don't worry about it at all. You are very welcome, and you do not have to ask if you may add your input as we value yours and others experience and knowledge very much!

Best wishes

Debby

sceaux · Member

Many thanks for that Debby

I hope that I can show to other people that with KC you can live/work/enjoy normally.

I have heard many younger people on our croatian forums claiming that ther case is the worst and they are acting on the way that "all their ships are sunk"

It is not like before but however thanks to new achievements in medicine and our ability to investigate more and have acess to many data, because of that it is much more easier to go on

Everything the best also for you