CHARLOTTE'S WORRIED MUM

[Charlottes mum]

Hi. Charlotte had a check up 3 wks ago and the optom told us that she has slight pressure marks on both corneas which she suspects is from her CLs pressing. She's been wearing them for just over 6 months now with no probs. Just uses the systane drops during the day as and when. She ordered a new CL for Char's right eye which she said would fit better and explained to me that often the CLs cause these marks but they are only apparent after wear of lenses for sometime. I asked the optom if she thought it was the KC advancing but she said she couldn't say one hundred per cent that it wasn't, however if in 6 months time if there are marks there then she would say it was probably an advancement. The left CL stays as is for now. Char had a scan prior to us being told re the marks as the optom used those yellow drops to check the fit of the CLs. They could only manage to scan her right eye tho as she was too wriggly for the left. They will try again next time. She went back last week as arranged, after wearing the new right CL for 2 days, and they were pleased with the fit of it. BUT I have noticed a marking under the lens on her left eye, just very tiny but definatley there. With no lens in her eye I can still see it (I have to look at different angles and get her to turn her head as it is so very tiny. Just like a little "nick", its definately on the eye but it goes away after about half an hour or so. I didn't expect to be able to see these pressure marks???????!!!!! If thats what that is????????????? When I take the lens out for her and reinsert it (wetted) its not so apparant but reappears again within a couple of hours. I phoned the eye clinic this morning and the optom said she wants to have a look at it. Charlotte has been managing well with her CLs, no complaints or discomfort aside from needing the aforementioned systane in for comfort. Its me who's panicking again just when I'd more or less "calmed down" too. Charlotte would say if she was uncomfortable and she doesn't complain about any pain or anything (she would if there was any) Anyone got any info re this latest ahead of our appt tomorrow would be greatly appreciated. Thanks, Angie

[GarethB]

Yes you can get pressure marks, I used to get them with the RGP lens in my rigt eye. You can get 'scuff' marks on the cornea from an RGP lens moving on the cornea, these marks look very similar in their regularity to those if you use a scourer on a stainless steel kitchen sink drainer. Irregular marks on the cornea are one of the signs of KC.

In the UK I know many people who have had this from RGP lenses and now us the soft silicone hydrogel lenses for Irregular Cornea conditions which include KC. The ones who I know that have had the scuff marks, they have complety disappeared and those where it resulted in corneal scaring, the scarring never went away but was much reduced that they were no longer considered for a corneal transplant.

For me it would be something I would be monitoring carefully and how long Charlotte is wearing her lenses. There is also piggybacking to cushion the cornea from the RGP lens.

Unfortunatly fitting a KC eye is often a compromise between comfort, fit and vision to name a few but there are so many lens choices it may be a case of seeing if there is a more appropriate lens for Charlotte.

[Charlottes mum]

Thank you for that reply. I really do appreciate it. I've been checking the forum a lot today to see if anyone has replied to my question. It's just about what Agnes (Char's optom) told us two weeks ago. I'm quite panicky really because I guess I never expected to be able to notice marks myself. Sometimes Char comes home from college and the len/ses have slipped/moved and maybe if her eye's have been dry then said lens has "imprinted"??????????????????? Sounds like what you're saying also. Appt tomorrow. Thanks again. Angie for Charlotte

[Charlottes mum]

Hi. update re yesterdays appt. Agnes had a good look in Charlotte's eyes, she invited me to look too. For the first time I could see the marks on her left cornea (through the scope) very weird feeling actually seeing them. I put the left CL in for Charlotte and we had a chat while we waited to see if this "thing" appeared. Sure enough 10 mins later it was there. Agnes took one look face to face no scope and said "air bubble" she then confirmed it through the scope. I had a look too. So did my son, Tom. Agnes said another term for this is "dimple vail". She explained that as Char's left eye cone has a flat at the top this is where the air bubble is presently occuring and we that we should look to see if it (the air bubble) stays in the same place or moves around. If it stays in the same place then they will prob need to try a different lens in order to obtain better vision. She explained that she treats a lot of people who present with multiple air bubbles with no problems. It really is just a case of seeing if they distort the vision enough to warrant changing the lens. They are so "on the ball" at Hull Royal Infirmary that I feel confident that nothing will be missed with Charlotte's KC. Agnes even drew me diagrams and at my request spoke to Chris (my hub) on my mobile to explain all this to him (he was at work). Nothing was too much trouble and all this went a long long way to stop me panicking Charlotte's left eye (the most KC one) cone is pretty steep but no more so than last Nov/Dec, she has marks/scarring from a previous hydrops which we knew. Agnes said they are no worse since Nov/Dec. Charlotte very rarely complains re her lenses. She's managing so well and even puts the systane eye drops in for herself whilst at college. We spent over an hour in the clinic and Charlotte behaved beautifully, I think she quite likes the attention to be honest. Diva!

[space_cadet]

Hi Angie,

so sorry to hear this

Glad that they are looking after you and Charlotte over the Umber Bridge :p

*gentle hugs*
Lea
xox

[Charlottes mum]

Hi. long time no post. All's been ok except for Charlotte's lash touching (bad habit!! extremely annoying. am blue in the face with telling her to stop etc.) I make her wear cotton gloves when we're sat watching TV of an evening which stops it a little bit. It is lash touching and not rubbing of her eyes, I'm absolutely definite on that score. Occasionally lots of lash touching results in her lenses coming out, usually the left one as I think she has less tolerance to that one. Once in a while when she's had them in all day she's been known to bring it to me! Not so good! . When Char is not wearing lenses she doesn't seem to mind and her vision (although obv not brilliant) is pretty good all things considering. We have all sorts of sneaky little tests we give her, reading things etc. and even tho obv we're not op-toms she does surprise us with her ability/vision a year down the KC road. With lenses in of course her vision is much improved and she has dry eye a lot and the systane is pretty much a fixture in her college bag/my handbag. it does give relief but now the season's changed again, she needs it more and more. Today she lost the left CL on way home in school minibus due to lash fiddling/dry eye so tomorrow I shall be on the phone to the clinic which I worry about, this happened in August for the first time so I guess 2 losses in a year is not so bad for a young lady with learning difficulties/behaviour probs etc. as she does. I asked her this afternoon if she would prefer to try specs again if we could get a really comfy pair (even tho I don't suppose there would be such a thing given the compromise of the Peripheral vision) or if she would choose lenses every time. She said she still chooses lenses which was what I wanted her to say! So even tho she flinches a bit when I first put them in for her and she has to have the drops in several times a day she's still happy with them. She's not due to see the op-tom until in the new year (last appt was the one in above post) I'm now going to go and have a good catch up read on this forum but any advice, thoughts etc on any of the above would be really appreciated. Thanks. Angie

[Anne Klepacz]

I remember a consultant at one of our conferences suggesting that if we felt the urge to rub our eyes, we should try just gently touching the eyelid instead and that this would often be enough to soothe the itch. So it sounds as if Charlotte has developed a variation on that - just a shame that it sometimes results in the lens coming out! Though she's still doing brilliantly - I'm sure lots of us have notched up more than 2 lost lenses in a year. And if she's doing it in the evening, I wonder if that's a sign her eyes have had enough of the lenses by then. Might be worth talking to the optom about how long the lenses should stay in each day particularly if her dry eye is worse in the winter months (I'm sure I'm not alone in finding central heating drying my eyes out). And if more hours without the lenses would limit what she could do, maybe just taking out one of the lenses in the evening might work for her. It's something that many of us have resorted to in order to extend wearing time. Finding the balance between maximising good vision time and potentially overwearing the lenses is something that lots of people with KC struggle with. I'm sure others will have other strategies to suggest. But it's great that she's still so positive about wearing them.
All the best
Anne

[Charlottes mum]

hi and thanks for that. certainly something to think about and consider although Charlotte "lash-touches" pretty whenever she can and we spend SO MUCH time and energy trying to distract her which is quite draining really (hence my idea for the cotton gloves in the house. I think she just has the habit now and it's (going to be) hard to stop. Obv hygiene is a worry espec when I'm not there. lenses go in before breakfast and out again after college mon to fri at about 5.00 to half past. weekends the time is pretty much the same. she usually watches tv of an evening "lensless" and quite happy but our tv is nice and big 42" with a really fast bitrate or whatever it's called. (that was an issue we addressed straight away after Char's diagnosis of KC ) she doesn't sit mega close to it, we're on bean bags about 15 ft away. Drops are in whenever and very frequently. her eyes don't look sore, just a bit red rimmed and tired but only by teatime which is why we pop the CLs out for her then. Angie for Charlotte x

[Ladyburd]

Hiya

Mum's do worry don't they!

I hope you have calmed down - easier said than done huh?

I'm a habitual rubber & lash toucher, but have found that a daily antihistamine & some gentle eye exercises have helped reduce this NEED to rub

If you look on YouTube there are several videos that demonstrate eye health exercises. (lenses out)

But for lenses in, I have found that looking down at the floor foe a few seconds helps

If i really can't resist, I try to do something else - I have opted for getting a glass of water!

Hope this easy to implement advise helps her

All the best

Cx

[Loopy-Lou]

how do eye exercises help with KC and lenses?