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General forum for the UK Keratoconus and self-help group members.

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DJ Smak
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Postby DJ Smak » Fri 14 Oct 2005 11:52 pm

Hi everyone, im new here, i used to be on another site a while back but its no longer running and I found this site.

I do not have KC, initionally i was diagnosed with it back in 2001 and was prescribed an RGP for my right eye, my left eye was good. In December 2004 I was noticing the vision in both eyes getting bad so i had another topography done and was told that i have pellucid marginal degeneration. Ive done lots of reading on this subject but in almost all the things i have read it mention KC which i do understand is closely related to PMD.

I cannot find any forums for people with PMD so i hope you dont mind me being here. I figured since treatment is similar ie: RGP lenses etc that i could post here.

I have RGP's i use for both eyes now and they are so uncomfortable that i am thinking of switching to RGP scleral lenses. The vision in my right eye with the current lens is bad, i mean i can still not read an eye chart with it in, but i know my prescription has changed so i am hoping that if i get it redone then vision will get better.

My doctor mentons transplant as a means to deal with this, ive only been diagnosed a short while so i cant understand why hed even mention it so soon. I want to try anything before that as it scares me to know that id have to have a transplant yet still go through all m going through now with my own cornea. I'm only 28 years old and the thought of getting older and wondering how my sight will be when im say 65?

Things just depress me, Im trying to get an apprentice in the automotive service industry and wonder if i could even do this field of work with my eyes? Its just getting to be too much for me, the depression and the things that happene everyday such as removing my lens today and then my eye starts burning really bad and tears ( i am unsure if thats what they were) running down my face. I thought my cornea had perferated or something and it was leaking.

Anyhow, i hope things calm down for me and i can see better. Im glad i found this place and i look foreward to hearing from all fo you.

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jayuk
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Postby jayuk » Sat 15 Oct 2005 12:27 am

Hi!

And welcome to the forum!!

PMD and its treatment is similar to KC as you pointed out and in all honesty we do go through the same things!...

However due to the irregularity and also the rather specific areas of thinning it is generaly only diagnosed when the condition has progressed....as would be the case int his instance!

You mentioned grafts.....I guess whilst I can understand your concerns, Id be inclided to weight out the existing quality of lige you have

a) can you function
b) once you have been refracted; can you see better

If the answers to the above were yes, I would personally not go the graft route.

You made a valid point on your age and having a graft. I am also 28 and thus also had the same concerns...however I really was at an end of the KC road and so had little to lose as I had not vision from the eye!

You mentioned that you cannot even get the eye chart with the lens in, that is not a good sign! and i hope that a lens change and prescription will aid you in a positive way!

I would def check out the various lens types available; however one thing thats more obvious with PMD is the level of Astigmatism that the cornea has, hence why although in some instaces it may not be steep, getting the correct lens can be half the challenge!

There is also a choice of having corneal rings put in for PMS however this I think you should raise with your Consultant/Eye Speclist......
KC is about facing the challenges it creates rather than accepting the problems it generates -
(C) Copyright 2005 KP

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Postby DJ Smak » Mon 17 Oct 2005 2:27 am

thanks for the reply!! Things are constantly running through my mind. The more i try to get things off my mind the more they stay. Its hard to deal with this, knowing that im still pretty young yet 80 year olds probably have better eye sight than I. I worry that my right eye wont be able to be corrected through a new lens, i worry how am i going to put them in at all when and if my left eye gets as bad as the right. I wont be able to see my eyes to put them in. Its like finding out you're dieing yet this isn't killing me. Its just slowly making me not be able to see which is a hard thing to deal with.

I've been through so much in my life, more than most folks would ever have to deal with. Now this and the prospects suck. Im sick of waiting to see the doctor, to have to get a set of lenses made and then they may not even work.

I just need people to talk to so again im glad to have found this place.

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Postby Sophie Bull » Mon 17 Oct 2005 7:35 am

Hey, I know the feeling well..'if this is what my eyes are like now, what will they be like when im over 60 or even in the next ten years. Im only 23 and have already had one eye grafted and am about to have a less invasisve operation in my second eye. The RGP can be horrible, especially if your not even getting good enough vision for the chart, it gets to the point when the discomfort just outweighs the sight gained. I hope the new fit is an improvement.
Keep talking..a problem shared and all that
soph

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GarethB
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Postby GarethB » Mon 17 Oct 2005 7:37 am

Putting lenses in without being able to see is something you get used to quite quickly.

I have a set area in my bathroom where everything has its place so I know to get the right solution and I get the correct lens. It is very regimented the way things are set out, but if I drop a lens, it lands on atowel over the sink so the search area isvery small and I soon find the lens by gently brushing my hands over the towel. You can feel where the lens is on your finger and you know where your eye is from the way you pull the lids slightly apart. If the lens does not go dead centre but is in your eye, you can feel it under the lid and gently massage it into place.

Give it time and it is not as bad as you first think.

Regards

Gareth
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Michael Clough
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Postby Michael Clough » Mon 17 Oct 2005 10:53 am

Hmm just found this web site and would not normally contribute but am struggling to find anybody who knows quite what Im going thru!

44 year old Diagnosed with disease in right eye in Feb this year (2005) and have rapidly deteriorated vision since that time. Have been through the pain barrier with the rigid lens but am now suffering at end of day when removing lens finding very painfull dull throbbing in eye over night causing lack of sleep.

Doctor now advises very little left other than surgery and is making me an appointment with surgeon.

Left eye is perfect (bottom line of eye chart) therefore doc suggests get surgery done before onset of probs with non-affected eye?

Any thoughts anybody?

PS Any thoughts on driving with Keratoconus...?
Michael Clough

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jayuk
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Postby jayuk » Mon 17 Oct 2005 11:03 am

Michael

You have come to the right place!

On this site you will see and read many examples of what we go through on a day to day basis.......

With regards to your case, there are a number of things you can ask yourself

a) have you tried all the varied lens out there for KC?
b) have you been told at what stage the KC is?
c) You say you was dia Feb of this year...now that would be EXTREMELY agressive KC..if you need to get a graft at this stage.....that puts you at 7 months from normal vision, to diagnoses to graft...now thats VERY fast and in majority of cases uncommon.

From what you say; I would get the lens fitting checked out as soon as...as if it is aching overnight that would indicate to me that the lens is bearing on the cornea to much and thus causing issues on a daily bases which is not recovering...so thus each day its getting worse....but thats just an unqualified opinion there.

Hope that helps!!
KC is about facing the challenges it creates rather than accepting the problems it generates -

(C) Copyright 2005 KP

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GarethB
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Postby GarethB » Mon 17 Oct 2005 11:29 am

Michael,

Only time I experience pain after lens removal is because I have worn them for too long!

Comfort eye drops can help, the one I use is Systane which is hard to come by, but it makes lens wear more comfortable. I use the drops before putting lenses in and again when I remove the lenses.

If wear time is still an issue, wear one lens at a time which I do. Start the day with the left eye, come lunch remove the lens. After lunch put the right lens in and I can see all day without over wearing the lenses. Over wearing lenses can cause damage as the eye drys and the lens does not move freely to circulate tears behind it.

Are your eyes red when you come to take your lenses out?

Driving with KC is fine, but it is advisable to notify the DVLA. I have done so since 1989 and until recently I used to race cars but for motor sport you need to achive a minumum uncorrected sight standard which I no longer make.

As far as surgery, always keep as a last resort. It is rare to get perfect uncorrected vision and it is a long process, Stitches are completely removed 12 - 24 months after surgery. Then before you can wear glasses the sight needs to settle to a reasonable point.

A patients definition of success is often vastly different to to a medical definition.

Having had grafts now for over 16 years, I would strognly urge you to try other lens types and lens cleaning solutions before considering surgery.

you have got through the first hurdle of RGP lenses, the same perserverance is needed regarding lens comfort.

Regards

Gareth
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Michael Clough
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Postby Michael Clough » Mon 17 Oct 2005 11:31 am

Jayuk

Thanks for quick response.

Eye has deteriorated over last 18 months but was not diagnosed until Feb by which time it was already in an acute condition. I have had four different lenses fitted during the last months which after each fitting have been great....then gradually deteriorated.

Recent problems have mainly been losing lens during day then as mentioned pain over night.

I seem to read varying comments about surgery? Is it best to persevere with lens as long as possible or to go for surgery? My doctor says I am in danger of getting corneal hydrops due to very thin cornea (this sounds bad...?)

Where can I find out more about surgery and actual experiences of patient following surgery. I am advised 12 - 18 months recovery...what does this mean? ....12 -18 months of eye patch/no driving or just 12-18 months discomfort......

Run my own business therefore little concerned!

Mike
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jayuk
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Postby jayuk » Mon 17 Oct 2005 11:45 am

Hi Michael

What design of lens have you been trying now? Have they told you?

Basically there are a whole list of lenses KC patients can try from Softperms, Scleral, Kerasoft, RoseK, Intra-Lymbals, etc......there really is a massive choice.

From what you say, it seem that your KC MAY be going through a progression phase...now this may continue or may just stop......but noone can actually predict that.

Hydrops is something that in my personal experience wasnt a nice one! However some people have hydrops and recover within 4 weeks, and in my case took about 9 months. But basically its where the cornea gets too thin and the membrane splits whereby water/liquid seeps in.

I would be inclined to ask questions to the person hat has recommended grafts....on what basis are they recommending it? ..

Recovery for grafts is a very long process, depending on what type of Graft you have. Basicaly there are two common ones

Full Penetrating - recovery - 9-18 months)
And
Partial Graft (DALK) - recovery 6-12 months

I have referenced my write up below for you to read which is what I am going through now there are also a few others on the board that are extremely valuable to read as thats what I did prior to having mine

http://forum.keratoconus-group.org.uk/v ... .php?t=417

Making the decision of a graft should never be taken lightly..and should be made with all the information in front of you....

I can relate to your own business scenario...I contracted for some 9 years and prior to my graft went into Perm employment as I knew the next 12-15 months would be hard for me to enjoy the contractors lifestyle!....however I also knew that if I didnt work I didnt get paid!...and thats something you probably have concerns about!

Gareth made some good points and questions relating to your eyes right now..
KC is about facing the challenges it creates rather than accepting the problems it generates -

(C) Copyright 2005 KP


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