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Re: To all who have joined this forum recently

Posted: Fri 08 Sep 2017 7:17 pm
by Anne Klepacz
Thanks, Dave, and it's good to know you've found the forum helpful. And yes, please do tell us about your journey (on a new thread so that more people will notice it).
And all the best for your next CXL procedure.

Re: To all who have joined this forum recently

Posted: Wed 13 Sep 2017 9:48 am
by KyD
Hi,

New member here. I am 22 and I have had KC for 6 years. In the space of the first two years my vision deteriorated quite quickly (very stressful as I had 20/20 vision) and have worn RGP lenses too much success unless the KC progressed, causing my eye shape to change, and the contacts to become very painful; causing me to have a refit. I had cross linking on my left eye (the worse eye) 2 years ago, and then had my right eye done December 2016.This has seemed to have stopped the progression, although we are still monitoring my right eye.

I have also had intacs done in both eyes, my left was done 7 months ago and my right 3-4 months ago. Tbh i did not need the intacs to make my contacts fit properly as I did not have a problem with this unless I needed a refit as mentioned above. I was hoping it would improve my vision, which it has done somewhat but much less than i was hoping (though my vision is still improving slowly so anything is possible). From what i understand Intacs are really hit or miss, you either see an improvement in vision or you see a negligible one. But the benefits even if you have not seen much of an improvement is that your contacts should fit better (something I did not need help with as I mentioned before). The only downside I have seen from having the intacs done is that I now seem to have dry eyes which i never had before and from time to time I have a foreign body sensation where I can feel them. This normally disappears after some sleep though.

Is there anything else I can try to improve my vision without the aid of contacts?


Best,
Ky

Re: To all who have joined this forum recently

Posted: Wed 13 Sep 2017 10:35 am
by Anne Klepacz
Hello Ky and welcome,
Thanks for sharing your story. People do ask about Intacs on the forum from time to time, so it's good to hear about the pros and cons from someone who has had them fitted. I'm afraid I don't know of anything else that could improve your vision, though who knows what more research will bring in the future? For some people, a pair of back up glasses is useful to give the eyes a break from contact lenses. They obviously won't give as good vision as contacts, but for some they give better vision than nothing. Doesn't work if the KC is too advanced though.

Re: To all who have joined this forum recently

Posted: Wed 13 Sep 2017 11:02 am
by KyD
Thanks for the speedy reply. Glasses stopped working for me early on. Although I may give them another crack now I have the intacs and my vision is improving slowly.Hopefully something new will come out of the works to help improve unaided vision even more.

Thanks,
Ky

Re: To all who have joined this forum recently

Posted: Wed 13 Sep 2017 11:15 am
by KyD
Does anybody know if PRK would be an option?

Re: To all who have joined this forum recently

Posted: Sun 17 Sep 2017 7:54 pm
by anya
Hi my name is ANYA i have had KC for many years now its not been easy id love to hear from anyone out there x x

Re: To all who have joined this forum recently

Posted: Fri 06 Oct 2017 10:16 pm
by Lisa
Hi all, about 5 weeks ago I went to my local minor injury hospital with what I thought was conjunctivitis. They immediately sent me to the eye hospital, upon arriving I was seen immediately. Dr informed me that I had a 6mm corneal ulcer, this was so painful. I was given many numbing drops in my eye, I was very light sensitive, the doctor informed me that it was highly likely that I was it was going to rupture. Luckily this didn’t happen. After spending 6 days in hospital I was allowed home, however I was continuing hourly antibiotic drops in 24 hour period. I still continue to feel a little unbalanced, feeling sick and have pain in my eye can you tell me how long this will last please???

I’ve been to see the eye surgeon yesterday and he informed me that I would definitely need a corneal graft in a 5 months. Upon looking up corneal graft surgery, this has worried me somewhat. I rejection common in this procedure?
Thank you so much for your input.

Re: To all who have joined this forum recently

Posted: Sat 07 Oct 2017 3:21 pm
by Anne Klepacz
Hi Lisa and welcome, though I'm sorry such a nasty ulcer has brought you here. Can't help with your question on how long your pain and discomfort will last, I'm afraid, though hopefully you have another check up soon. The only corneal ulcer I've ever had was much less serious and cleared up in a week.
As for corneal transplants, most people don't get any rejection episodes. Daily steroid drops for 6 months or longer guard against rejection. And for the minority of people who do have a rejection episode, the rejection is almost always reversed by extra doses of the drops - I had several rejection episodes with both my grafts but they were successfully reversed each time and the grafts remained healthy. It is important though to act promptly at the first sign of rejection - if you do need a graft in a few months time, the hospital will give you information on what to look out for.
I hope that helps, and do let us know how you get on.

Re: To all who have joined this forum recently

Posted: Sat 07 Oct 2017 4:21 pm
by Lisa
Hi Anne,
Thank you for your response, I really appreciate your input. You have definitely put my mind at rest. I was in a panic when the doctor informed me that the only way forward was the corneal graft. It sounds like I’ll have to be extra vidulant after surgery.
Thank you again.
Lisa.

Re: To all who have joined this forum recently

Posted: Mon 18 Dec 2017 3:17 pm
by SPatel
Hi Everyone,

I'm Suleman, I'm supporting my wife who has recently been diagnosed with Keratoconus. I'm finding the forum useful and very helpful. I'ts only a been a few weeks since we have known and the support I've got from the NHS Opthamololgy has not been helpful at all... "it amounts to we don't have any KC specialists anymore so go online and check on the internet for an optician and take it from there" of yeah and things like why don't you wear glasses, and oh you probably wont be able to handle these types of contact lenses etc... I was fuming when we came out of the hospital.

I need a little help, If anyone can give me some pointers please:

Are there any good opticians in the Wolverhampton/Walsall area, potentially Birmingham?
Wolverhampton have an eye hospital, has anybody used it? do they have KC qualified support, can I ask my GP to refer my wife there?
I read there is financial support for this condition i.e around £56 per specialist lens? How do I go about requesting access rather than paying hundreds?

It's really hard trying to stay positive and not get depressed when we are new to this condition and to obtain support with the correct answers from the professionals, never mind how my wife who has the condition is feeling.

I appreciate these are basic questions for most, however a reminder or any support to help me get my wife to the next stage will be greatly appreciated. she has been told the she needs rigid lenses (but reading about Sclerals seem to be right fit for comfort) having never worn contacts but want to be sure we are following the correct process to help her and not get taken for a ride because we are in a stressful zone at the moment.

Appreciate time taken to read and reply to my please. TC everyone. S,