All of us Vs Keratoconus

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Post Info TOPIC: Not this again
Allen

Date: Tue Mar 6 7:59 AM, 2012
Not this again
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I was diagnosed with keratoconus almost two years ago and started off with GP contacts. I was told they would be uncomfortable and I would have to get used to them but what I was experiencing was not right. My eyes would turn bloodshot red to the point you'd think I was stoned beyond belief. I could feel the ridges of the contacts all over my eyes like a squeezing feeling. I was not able to wear these consistently and my eye doctor kept telling me to keep wearing them and I would get used to them. I would wear them on and off with no results. Finally he did something to try to make them fit better, I believe he changed the steepness but it did next to nothing. After a few more months I went back and he gave me the option of trying piggybacks or hybrids. The hybrids appealed more to me but since I was 18 and lived with my dad he chose to get the piggybacks because they were cheaper. They were only a bit better than the GPs. I was able to wear them a bit more but they were still unbearable. Eventually I lost a hard contact down the drain and chose to wear the soft contacts for the time being, as they were almost satisfactory just on their own. I fell in love with contacts for the first time—wearing hard contacts were like hell—although I knew my eyes would get progressively worse and never fully be corrected with the soft contacts from my piggybacks. My dad put off getting the hybrids for a year... I eventually ran out of soft contacts and went back to wearing my eight year old glasses at home. Finally today I received my synergeyes hybrid contacts and the minute I put them in I thought, "not this again". They felt like the other hard contacts I wore before, squeezing my eyes and making it hard to look up for long periods of time. After the first day I noticed my eyes didnt turn red, and I'm hoping these contacts at least stay wearable despite being so uncomfortable. But the discomfort is still there, and I know the feeling all too well. In my past experiences nothing has relieved me of the squeezing feeling and I doubt it will go away now with some time wearing these. I still constantly have to rub my eyes and try to "adjust" my contacts which does absolutely nothing. Is there no hope? Were these contacts just a waste of money too? I'm so frustrated with nothing working and feel so alone as I've never met anyone with KC so it feels like I'm the only one in the world going through this... That's why I came here. To me anyone on this site who has this disease is my friend. I need some advice and encouragement. I'm also looking for a job and wondering how am I supposed to do an interview or make good impressions with my eyes irritating me all the time? I don't know what to do... I was looking for these contacts to be my saviour

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Date: Tue Mar 13 1:27 PM, 2012
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Hi Allen,

I know exactly how you feel. I have tried contacts (hard, piggy back, the ones with soft edges etc) for the last 10 years with the same poor results as you. I´m now at the point were I´m about to try anything and this spring I will get cross linking and PRK. Here in Sweden the surgery is for free so I´m lucky. I´m far away from being a doctor nor a KC expert, however, I do know that there has been alot of progress when it comes to KC and surgeries: http://www.kcfreedom.org/confirm.spark?aBID=48159&abKey=cd5248fe0df5fc13f96c29119bf52782

I feel for you man, I really do. I also know this "being alone" feeling and I´m sorry I can´t help you more. Just hang in there and I´m sure you´ll find a solution.

/Hoffa


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Date: Wed Mar 14 2:02 PM, 2012
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I had good results with the cross linking and TCAT(PRK) which I had done over a year ago. I went with Lasik MD because it was 1/2 the price and I'm self-employed with no medical plan. My vision within 10 feet is much better now. I can now work on my computer without my glasses on and I just use my glasses for driving and watching tv. In my good eye, I went from a -4 to a -1.5 with my prescription for my glasses and my bad eye is now correctable. I'm still only 20/30 with my glasses on but I don't require nealy as powerful of a lense.   I'm 42 and they said I was really lucky I had it done because my one eye was so far gone and this procedure will hault the KC from getting any worse. For me, it took about 3 months after the procedure to start seeing any results but things continue to get better with my vision. The only downside is I have gone through 3 pairs of glasses since the procedure. About a month after the procedure I was a -4.5 and at around 6 months a -2.5 and at 1 year -1.5.  I now buy my glasses online. Oh yeah, the night vision was bad for the first 6 months, however, my night vision was never that good to begin with.

Allen, if you have'nt already, I'd discuss the cross linking as an option with a surgeon -- there is hope. Hoffa good luck with your procedure.



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Date: Wed Mar 14 3:46 PM, 2012
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Hi dg22 and thank you!

I´m glad the cross linking and TCAT work well for you :)

/Hoffa



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Anonymous

Date: Sat Nov 24 1:15 PM, 2012
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Hi Alan

I know exactly how you feel. I tried the soft permeable some years ago and found the burning sensation to be unbearable. I discovered that if I had left the lens to sit in the solution for longer than overnight I could wear these without the burning.

My own conclusion is that the neutralising tablet which dissolves later takes too long to penetrate the tiny pores that are already filled/saturated with the peroxide. Therefore if I wore the lens the morning after sterilising I had chronic burning but if I waited a day or two I had no burning. I think my conclusion is very logical but my specialist wouldn't hear of it and insisted I put the lens in and drive the 1 and half hours to see him in order to be assessed and then of course take the return journey. He obviously had no idea I never wore the lens again but my eyesight worsens and I now have floaters in my field of vision of my better eye.

The lens made the vision in my eye PERFECT the condition of keratoconus is very obscure and distressing and impossibe to explain to a non sufferer. However the pain and burning wasn't worth it. I was also concerned with the damage I might be doing to my eyes. I have read that - Recently published research has shown significant incompatibilities between contact lens materials and some contact lens care products.  http://www.roseklens.com/page/15-frequently-asked-questions#q14

This might explain the problem however I think my theory is true especially given that the lens doesn't burn if left for longer and therefore the problem of burning at least could be solved with having two or three sets of lens for rotation. The cost of lens and fluids ia prohibitive especially if son uncomfortable that you wouoold ony consider wearing occasionally. Furthermore one lens I wore more because of my discovery split within 10 weeks and pinched my eye on removal. I belive this piinch worsened my eyesight and I gave up! these lenses are too expensive if you're only going to get 10 weeks out of them.

I have come to the internet only to find that the sites blogs etc. are dominated by healthy shiny experts and graduates that have loads of theory and surgical solutions but have no idea what it is like to live with kc. often it seems like there is a huge demand for people to try stuff out on. If they need us they should start by listening. Don't put stuff in your eyes that cause pain or burning the experts need to find solutions. They would wail if they got soap or some dust in their eyes.

Try letting your lens sit for a day or two.

 

AF





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Anonymous

Date: Sat Nov 24 1:56 PM, 2012
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Hi again Allen

About the job hunt thing I hope you have had some success. I'm currently upskilling with digital media html illustrator webdesign and stuff. I'm quite good but would need a work environment with no pressure (I could handle time deadlines but not personal stuff) and the ability to work at my own pace (take longer spend more of my own time if neccessary). I recommend you consider upskilling and becoming a freelancer where your work will speak for you. This is what I'm hoping for.

I was approached by one of my tutors yesterday about applying for a job that was advertised to them directly because of the subjects we are studying. He couldn't believe I didn't have the confidence in myself 'cause I'm good at what I do. This has sent me into a whirl of surfing the net regarding kc and like you I feel Oh! not that again. I feel I am on the edge of a money spinner for someone else.

Also the odds of graft are not very encouraging - I would rather distorted vision than none at all! - Over 90% of the corneal grafts are successful – it would follow that up to 10% fail and that most of those 1 in 10 would lose the vision in the eye. Another study states that - up to 81 percent of transplants remain healthy at five-year follow up. (Therefore by 5 years the success rate is about 72.9%) No thank you. 

 

How do you explain to someone especially when you appear to be able to see pretty normally. Then there are the people with normal eye problems correctible with spectacles who will opt to wear contacts (for appearance) even though this means they cannot see their computer screens because unlike spectacles they cannot take the lens out to view their screens so they think they are as badly off (but by choice).

I have also become aware of peoples perception of me due to the kc. Because I learned at an early age that if I would squint and raise an eyebrow I would see more clearly (I developed early frowns on my forehead) but because of this people think I'm annoyed or judging and giving them nasty looks etc. You cannot begin an interview explaining this and who's going to wan to employ me if I do explain. I dread the idea of a workplace I would rather freelance, perhaps that way clients can get to know me through my work.

Another thing I have become aware of is that if someone I know is approaching me, those with normal eyesight have a cut off point at which they will decide they're being ignored and will look away JUST before I can conclusively tell who they are unless it is someone I recognise for other reasons than seeing them in focus. then we're fine!

Ayway try the business of letting the lens sit for more than overnight even if it means wearing it only every couple of days for a while. I'd love to hear how you get on.  wwould try this again byt I haven't been able to justify the cost of a lens in years but at this rate I will have no choice soon.

 

All the best AF



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