All of us Vs Keratoconus

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Post Info TOPIC: No contacts. No Intacts. No Transplant. No vision. :(
Anonymous

Date: Sat Jan 3 10:41 AM, 2015
No contacts. No Intacts. No Transplant. No vision. :(
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Hi,
Im Sophie, 23, Aus. 


I was hoping that by posting in this forum, I would perhaps be able to find people who share the same difficulties associated with keratoconus.


I was first diagnosed with Keratoconus 12 months ago at 22 years old. I had previously worn glasses for 5 years, for astigmatism. Over a period of 6 months I had a very significant deterioration in my vision - to the point where I thought I had a brain tumour as I was practically blind in one eye - only being able to see anything clearly if it was less than 20cm from my eye. I saw my local opthalmologist who is also my work colleague, ( I am a Instrument Nurse) and after an assesment and consultation with him I was referred to a refractive/ corneal specialist.


After two visits with corneal topography done of both times and several hundred dollars later, I was booked into have collagen cross linking 2 weeks later, costing me $2500. Although I knew it would not correct my vision, I was informed it would stabilise my condition. I had it performed in the vision clinic with 5mg of valium as sedation (which did not even hit the sides) and the procedure itself was horrendous, as was the following 24 hours of pain. 

Although over the following months the specialist told me my vision had improved and the keratoconus had stabilised,  my vision had become far worse, and I had become even more affected by the ghosting and halos to the point where I don;t feel comfortable driving. The ghosting and halos completely interferes with my view of other objects etc. At one of my recent consults with the refractive specialist, I asked about the possibilities of kerarings or intacts - which he refused because I am 'too difficult' as I was high anxious and panicked during the CXL procedure, and to have it done under general anaesthetic is not an option. He said that the only way of improving my vision is RGPs - but would not be a suitable candidate for contact lenses as I have a phobia of things touching my eye after an eye injury. I am also not a candidate for a cornea transplant as my vision is not considered to be bad enough to meet the criteria for the procedure - although I beg to differ...

I am desperate to have a second opinion from another specialist but having already invested several thousand dollars into seeing the specialist I am now, to start again at the beginning would be unaffordable. 

I now feel like I have no hope of being able to see clearly again. My keratoconus completely consumes my life. I am scared that it will affect my ability to work as I am a shift worker in a country town with no public transport. I feel unsafe driving. I get constant headaches and sore eyes, and constantly feel frustrated and depressed about the impact it is having on my day to day life.

I would love to be able to use contact lenses, but don't know how I could overcome my fear of it when I panic every time I have the air puff test done at the optometrist. 


Has anyone else been in the same situation?

 



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Executive

Status: Offline
Posts: 155
Date: Mon Jan 5 4:58 AM, 2015
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Hi,

Ask a contact lens fitter to give you training, and try and try again, until you have mastered it. Its either contact lenses or more surgery (and still you may need to wear contact lenses afterwards)

Wayne



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Member

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Posts: 6
Date: Mon Jan 5 6:42 AM, 2015
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Yeah I guess I am running out of options. I will just give it a go and hope for the best i suppose.
Couldnt be any worse than cross linking right? haha


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Sophie
Anonymous

Date: Wed Jan 28 12:49 PM, 2015
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any updates?

 

go see dr.kokkinakis in the city.

 

my right seems similar to your eye. ive got ghosting/halos in my right eye.I still have those symptoms in my left eye but not as bad.Im getting cxl in less then a month.



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Date: Fri Jan 30 11:22 AM, 2015
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I went to eye care company in george st, sydney today to be fitted. It was no where near as traumatic as I was expecting. Took a few goes to get the lenses in but was tolerable. The clarity in my vision with the mini scleral RGP lenses was amazing. However there was still some ghosting halos around the lit up screen that you read the letters off in both eyes - but compared to what I see with glasses was apparently a 300% increase in my bad eye. that was a good enough reason for me to buy them! Don't know how I will go inserting/ removing myself but surely it can't be worse than someone else doing it to you ;)

Good luck with CXL. It's pretty unpleasant for the 12 hours following - I found it difficult to sleep because my eye felt like it was burning. If I was to have it again I would get a sleeping tablet from my GP just to make it that bit more comfortable. The following days are not so bad. Hope it goes well for you

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Sophie
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