Intacts & Informing work you have KC , afraid of losing job

[drink]

Hi guys.
I have had KC for over 11years managed with rgp's.
Had a private consultation regarding cxl only to be told my condition is extreme and cannot be do e as my cornea is too thin now. However intacts/ring transplant can be done. Is intacts available under the NHS?, as the cost is clost or aroun £7k.

Kind of dissapointed with my hospital nhs opthalmist, as he kdpt giving me rgp's but never informed me of how severe the KC has become.

Regarding informing work, i have started a new job and considering kerarings/intacts so will need time off work, as iirc rgp's have to be not worn for around 3weeks. My work doesnt know i have KC, and im afraid of losing my job as i have a
morgage to pay for aswell. Am i doi g the wrong thing by not informing my work place? I really cannot afford to lose my job.
Without my rgp's im irtually blind hence why id need time off work, with rgp's i i have fantastic vision.

[Anne Klepacz]

Hi Drink,
Yes, Intacs are available on the NHS at some (but not all) hospitals. Though if you have fantastic vision with rgps, I'm not sure I'd be going for the procedure - unless of course, wear time and comfort is an issue for you. The reason I say that is that Intacs don't do anything to stop the progression of KC, plus they don't work for everybody and can cause additional problems. When they do work, then they provide a flatter cornea and can sometimes make contact lens fitting easier. But they're very rarely a way out of the need for lenses. Have you seen our 2009 conference DVD? There was a very good talk from one of the consultants who spoke about the pros and cons of Intacs. If you haven't seen it, just e-mail your postal address to anne@keratoconus-group.org.uk and I'll send you a copy. And hopefully some of the members here who have had Intacs fitted will give you their experience.
As for informing work, have you downloaded the leaflets about KC and work, and KC - how the law can help you at work from the home page of this site? www.keratoconus-group.org.uk/sitev3/publications.html
It's always a difficult one, but the argument for being upfront is that if an employer knows you have a problem, then they should make reasonable adjustments for you (which includes time off for treatment) under the Disability Discrimination Acts. If they don't know, they're aren't under any such obligation.
All the best
Anne

[drink]

Thank you for the fantastic Info Anne. I have forwarded you my postal address for the dvd regarding intacts.

Reason for going for intacts is I cannot have cxl done as my cornea is too thin. I cannot hault the progression now. Although vision is fantastic with contact lenses, without them I am blind, couldnt even read how many fingers im holding up.. Id like to improve my vision slightly with intacts for when i dont have my rgps in. Or if my rgp falls out of my eye then atleast il have some vision if i have intacts in. I guess its just to improve quality of life slightly as i do rely on my rgp contacts too much.

Fact is il always have KC, but no harm in trying to improve things and quality of life slightly.

It is alot of money, if i can have it done under nhs that would be great, but if i have to pay il just get a loan and have it done .

[Andrew MacLean]

drink

There are other types of contact lens that may be less prone to falling out of your eye. The best lens I ever had was my scleral (sometimes called a 'haptic' lens). It was comfortable, never fell out, did not allow any bits of grit to get into my eye.

I also know that some others have found soft lenses for keratoconus a great help.

Every good wish.

Andrew

[drink]

Cheers for the info andrew, il check them out, as RGP are a real pain when grit goes in the eyes, specially when its windy, can be nightmare.

Regarding Crosslinking, some surgeons are saying 400um for minimum corneal thickness, and some have changed theirs to 300um, and checking online i have seen the same info, some will have a minimum thickness requirement of 400um, and some have 300um.

Unsure whats going on there, if 300um guys have different equipment or just taking a higher risk.

[drink]

Update.

Hi guys, thought id put a quick update as to how my intacs went.

Its been around a year since i had the intacs installed. They improved my vision without contact lenses, enough to get me around the house without lenses, but overall still very poor vision, but better than what it was.
A year on and still struggling to find a good fitting comfortable lens. As intacs have complicated things/shape of cornea.

Currently managing to get around with my other untreated eye with rgp lens.

My untreated eye will soon need a graft, as my eye is almost always sore, and the cl specialist said the cells are starting to break in the eye, i.e corneas going very weak.

Hoping to find a suitable lens, currently trying the scleral lens if thats what its called. These are comfortable but need to find one which gives good vision. Oh and the size of lens is pretty scary, as im so use to rgp's for many years now.

I was hoping for better results with intacs, but if we find a good fitting lens with matching vision, id be very jappy. But a year on so far pretty dissapointed, but made good progress last few test fittings.

[Anne Klepacz]

Many thanks for the update, Drink. And all the best with the scleral lens. Scerals are the ones that are used for awkward shaped corneas, as they don't actually touch the cornea, and there's quite a few forum members who find them very comfortable once they've got used to the size and the different technique for putting them in. And all the best with the graft for the other eye when that happens.
Anne

[drink]

Thank you Anne .

I am really struggling ro get the scleral lens in and out. Just the shear size of the lens is scary. Even if i get it, taking it out takes me looooong time. Only wear it ocassionally.

[Whiteshepherd]

My left eye requires either a rgp lens at 11.8 mm or a mini scleral at 14.4 mm. The 14.4 is easy to place in the eye by using a plunger or even the top of the lens removal tool to hold it. You just use the tube as the flat surface to hold the lens and then look in one direction and place it in the eye with the lens filled with saline. Taking the lens out if dry is difficult so wet the eye for a few minutes and then use the removal plunger to get it out by placing the tool on the lower edge and pushing gently to break the grip and pulls right out. Of course if the eye is really dry or you try to pop it out by the center and it will not come out and if it does it will hurt like all heck. Sclerals are normally pretty comfortable lenses. Are you using mini sclerals or larger than 15.00mm?

Brad

[drink]

hi, apologise for late reply, The scleral lens i was given were huge, once in the eye, the lens was over lapping the coloured part of the eye, you could still see around 2 or 3mm of the lens all the way around the coloured part of the eye.


Late update,

Now around almost 2 years on since we had the intacs fitted in one eye, still struggled a lot to find a comfortable fitting lens. Since the intacs have been fitted, i have more or less not had a contact lens, due to comfort/corrected vision issues. It was decided the best course of action is to have the intacs removed. As i cannot afford to have them removed privately, I have been on the waiting list to have them removed for a loooooong time. Been almost 5 months and still not heard anything from them yet regarding a date of removal. I just about managed to pay to have the intacs fitted, so removing them privately wasnt an option, have to wait for the NHS to make arrangements.

Overall, pretty disapointed with the intacs, however, it had to be tried. I didnt want to look back and think 'wish i tried intacs', I have tried them, and found they arent for me. So thats one thing tried and done. Also, once removed, i can more or less go back to how the eye was, there has been no major permanant changes to the eye, which is a great pro of intacs.

I believe intacs would be ideal for people on early stages of KC, where the deformation of the cornea is minimal.